Disability & Caring

Please Discuss is the wait for a Baclofen Pump op cruel ?

2011-11-02T13:56:00.000Z

Introduction

This paper has been written to initiate a frank discussion amongst interested parties. It is written from the user’s point of view of the current medical pathway involved in securing the right to have an Intrathecal Baclofen Pump fitted.

Problem Statement

The current system is not patient centred and lacks an individual risk assessment approach. The insertion of an Intrathecal Baclofen Pump (IBP) is considered to be an elective surgery and therefore the waiting list system seems to have no method by which it can weight according to urgency. The current system, I advocate, having sat and watched someone endure the wait is cruel, verging on barbaric, as it shows a patient how good their life could be then sends them home to cope with their condition for multiple months.

Current Medical Pathway

IBP surgery is considered to be an option for those patients that suffer from life limiting spasticity / spasms, which have exhausted all other options to medically control their symptoms. The other options will include various medication trials and some physiotherapy options. Patients will have various long term illnesses, including Spinal Cord Injury and M.S. Therefore will already be coping with a non optimal life quality.

Stage 1: Trials of various medications. This can take years to get the right mixture of doses of various available chemicals. The requirement also varies as the condition progresses. Oral medications can fail due to various reasons, toxicity, bad systemic reaction to drug, condition not improving with use of drug(s) and other contra indications. The oral medications used to combat these symptoms are often being used outside of their primary licensed use; many are very familiar to those in Psychiatric medicine.

Stage 2: Clinicians if having failed during stage 1 to control a patient’s condition will at some undetermined point make a decision that a test dose of Baclofen is efficacious and can be injected into the spinal column’s intrathecal space. After detailed discussion with the patient as to the pros and cons of such a medication delivery system. If the test dose of Baclofen produces a good outcome the patient will then be sent home to wait, firstly for the outcome of a NHS funding application, then a suitable surgery slot by a Neurosurgeon. This wait can be 4-7 months or more.

Mr.TDB: A Case Study

Patient TDB is a 66 year old male, who in June 2007 contracted a Staphylococcus Aureus infection which led to spinal cord damage in region C3-5. This left him a partial, incomplete, non-traumatic spinal injury. As with many cases, the first year after injury was spent in various hospitals followed by adjusting to life in a wheelchair.

Spasms and Spasticity start to become a problem in mid-2008. Over the next 3 years, various drug trials were carried out, including, 3 separate Baclofen trials, Dantrium, Gabapentin, Pregabalin, Anatriptalene, Diazepam, Sativex and Tizanidine. All of the drugs either had little effect on the problem, caused breathing difficulties, or in the case of Baclofen caused agitation and unwelcome personality changes.

TDB first had the idea of the Baclofen pump floated with him in late 2009, but at that time was not feeling strong enough to under go another round of surgery with all its inherant risks and prefered to persevere with more oral medication trials. By the end of 2010 his spasticity was beyond unbearable and he finally agreed to take a test dose of Baclofen. The test dose was given to him at Stanmore in January 2011. It was found to be medically sucessful, but TDB was not totally happy with the results and took some time out to decide to go ahead.

By the end of March his situation has become so deplorable that he agreed to have a referal for surgery. 3 months in agony at home passes until he finally actually gets to see the Neurosurgeon on 27^th June for an intial consultation. Then another 3 month wait until a pre operation assessment date 12^th September. TDB is by this time too ill to make the journey , the operation on the 21^st September is cancelled due to the hospital needing to take extra measures and organise the transportation. His operation was finally carried out on October 19^th. 7 months wait in total from referal letter to operation.

This 7 month wait was inherrently dangerous, cruel and a gamble with this patients life. Despite many communications from the patient’s sole 24hr carer, giving many warnings as to the deterioation in the patients health condition and mental well being, as well as the daily physical dangers endured by his sole carer, all were ignored. No account in prioritising this wait was taken as to these facts:-

· This wait was on top of a 3 year campaign to find an answer for this patients symptoms.

· Patient did not have medication in place that was in any way controlling his symptoms or pain.

· Patient was relying on 24hr care given by his wife with no outside support.

· Patient was endangering his carer by not being able to be hoisted due to pain, expecting hourly intervention during the night because of unremitting spasms and pain.

· Patient needed regular physiotherapy intervention to straighten spasming legs, this very physical activity being carried out by his wife.

· Patient was becoming very depressed to the point wanting to take his own life, again his wife as sole carer had to talk him down from said episodes.

· Patient was getting into progressive sustantial medical difficulties, with breathing, low & high blood pressure , increase in pain, further loss of function, crushing effects from spasticity, and loss of appetite to name a few.

· This patient already had a standing letter inferring that funding was available from the PCT , because of previous funded medication that he was taking. It took only a few phone calls by his carer, to get the new updated letter from the PCT. This patient was already under the NHS Continuing Care regime. In this particular case, funding decisions should not have delayed matters as it did.

What needs to change

If funding from the PCT is a possible issue this should be cleared prior to any patient having a test dose of Baclofen, as it is cruel beyond believe to show a patient how good life could be and then send them home to wait. The funding letter from the PCT should take a week maximum having being cleared before hand.

The waiting list needs to prioritise the medical waiting time taking into account, home circumstances, current medication sucess, and how ill the patient is. A risk assessed , patient centred approach must be taken to ensure better outcomes in future.

Summary

Making an already very sick patient wait 7 months in this case, for an operation that as far as he was concerned was anything but ‘elective’, is barbaric, inhumane, cruel and has no place in a modern health system. This medical pathway must be reviewed and changed before someone ends up dying while they are waiting either through suicide or ill health.

Appendices & Further reading

http://medtronic.com information on what a Baclofen pump is.

http://spinal.co.uk general info from SCI charity regarding.

http://aspire.org.uk general information SCI

http://mstrust.org.uk general info on spasticity / spasms.

http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm US site with useful info.

My story in brief

2011-10-08T10:38:00.000+01:00

I have been a carer for most of my life. I was born into a household in crisis. On the day I was born, Father was recovering in hospital from TB, my eldest brother of 2 fighting for his life with TB Meningitis. Father recovered, but we had to move home as our lovely cottage in the Quantock village of Holford, Somerset had to be fumigated.

Mother struggled for the next 5 years with the help of her little helper, me, to keep the now severely mentally handicapped brother at home. One of my first memories at age 3, is of bathing my brother with turds floating in the water where he had messed himself. After our youngest sister was born in 1972 Mother made the painful decision that that she could not cope with looking after three children under the age of six, plus l that was so ill. Eldest brother was taken into specialist care. The birth of her forth child was very complicated, she died on the delivery table at one point and soon after returning home it was obvious that she was having some sort of mental breakdown, the stress of seeing her eldest son depart from the house and the birth took its toll. Mother then spent most of my childhood in and out of mental hospitals, had inhumane amounts of ECT treatment , had her not inconsiderable intellect dulled by various psychedelic colourfully named drugs.This left me and my father to cope at home with the other two kids. I learnt how to cook from a very early age, wash, clean and all the other household stuff for the family to get by, while Dad concentrated on bringing home the family income such as it was.By the way just because eldest brother was not at home he was not forgotten and had regular visits from all of us, still a big part of our dysfunctional family.

As I entered my late teens I found the duties and expectations at home suffocating so left home at 17 to save my own sanity. I spent the next 20 years of my life building up a portfolio of educational certificates and work experience. When I worked it was in safety, project & engineering management. The highlight of which, 2004-06 reconstruction work in war torn Iraq, caring on another scale all together.

June 2007, over the space of a few terrible days mine and my husband’s lives were torn to shreds, he became ill with a Staph infection that left him partially tetraplegic. Concurrently finding cancer on his right kidney. The remainder of that year was spent in various hospitals, me living like a hobo and him fighting for his life.

2008 we decide to try and resume our plans heading off to Australia, but by May 2009, a pressure sore caused by a spider bite and Terence’s deteriorating health mean that we have to make the hard decision to return to the UK.

Back in the UK, homeless, penny-less and somewhat surprised that looking after a Tetraplegic in a hotel is not considered an urgent situation. The real battles begin with a UK health system that is not geared up to help when you don’t neatly fit into one of their boxes. Terence couldn’t be just a run of the mill tetraplegic he had to have complications with taking oral medications, none helping with his progressive, aggressive, spasticity and spasms.

Even though Terence qualified for fully funded continuous care agency provision in October 2009, I am now looking after Terence 24/7 day in day out. He does not sleep at night and therefore neither do I. His inability to tolerate hoist use, constant physio demands, forcibly straightening his limbs to relieve the pain of muscles that seem to be trying to rip his body apart mean looking after him is a very physical job.

I became so desperate at no one listening or taking action regarding our plight that in July 2010 I take the drastic action of going on a hunger strike, which got national media coverage and the local PCT did start to help a little. Since then we have had sporadic carer coverage, but most of the time I am still my husband’s 24/7 carer, still here, battling a system that does not want to listen or act to ease both our suffering.

During this time being housebound I have kept sane by developing my social media skills, trying to get help for myself but also trying to support others in similar situations.

As I write this synopsis we await admission to hospital on the 17th October for Hubby to have a vital life changing operation. I desperately wait a decision from the local PCT regarding our new named care agency so that I can go visit my father who I have learned is dying of terminal cancer, this will be his last Christmas with us.

If it were not for the love , sense of team work, my husband and I have developed during this time, I would not still be here battling on against a system that does not really care about its carers.

Department of Health feedback re Care reforms

2011-09-29T15:44:00.000+01:00

The Department of Health is asking for feedback on care provision in the UK. I felt compelled as a service user to add my comments. Although my husband is supposed to be covered by the continuing nursing care regulations and therefore does not have to pay for social care, many of the issues regarding the quality and integration issues of the service provided are the same.

My background is in professional management having a MBA and having worked in engineering management in some of the most dangerous places in the world. I have been my husbands ‘unpaid’ carer for the past 4 years. During which time I have developed care plans, risk assessments, and nursing standards knowledge. It has also been my misfortune to come up against the bureaucracy that is the NHS medical system in this country.

I therefore submit my feedback as follows:-

1. Improving quality and developing the workforce

a. Should there be a standard definition of quality in adult social care as quality can often be interpreted differently? What do we mean by it and how should it be defined? How could we use this definition to drive improvements in quality?

· Yes there should be minimum standards that are tiered according the severity of needs of the user. Someone needs to develop a group of industry standards and guidelines like the rail industry has done that are available to all on line. People need training in all aspects of care even how to safely push a wheelchair. I have seen carers nearly tip people out having pushed someone down a steep slope. Any company setting up should have to sign up to the standards and agree to be audited against those standards. This would lead to nationally accredited training courses and standards. Care Companies could then concentrate on being staff provision agencies, rather than trying to be training organisations as well.

b. How could the approach to quality need to change as individuals increasingly fund or take responsibility for commissioning their own care? How could users themselves play a stronger role in determining the results that they experience and designing quality services that are integrated around their personal preferences?

· This is a very difficult area. I feel that many individuals are not equipped with the necessary life skills to deal with all this entails, payroll, maintenance of own safety, staff recruitment etc. My idea above would make this a little easier as they could recruit individuals with certain recognised qualifications and use the bank of online standards and guidance to ensure that they were keeping within the law etc. Society needs to provide people specialising in setting up home care to help people trying to set up and fund their own care.

c. How could we make quality the guiding principle for adult social care? Who is responsible and accountable for driving continuous quality improvement within a more integrated health and care system?

· Even though I know social services are under-funded and under-valued in places in our society. This responsibility has to sit here. They need to start being more as an advocate of the vulnerable, ensuring that needs are met. They also need enforcement powers to push their local medical authorities where needs be. Social services need to develop two arms, the caring role and the enforcement of national standards of care.

d. What is the right balance between a national and local approach to improving quality and developing the workforce? Which areas are best delivered at a national level?

· Standards, guidelines and qualifications need to be made by a national level body, to drive up quality and make the care of the vulnerable the same standard whether you are in Penzance, Birmingham, London or anywhere else covered by this scheme. This will help with mobility of the workforce, recognition of caring as a well worth profession. Delivery of need assessments and service execution need to be kept totally local but follow national standards. For example the assessment for qualification of NHS funded continuous care. Every local care agency should be aware of the mix of its potential client base, by the usual business marketing strategies and recruit accordingly the right mix of qualified people.

e. How could we equip the workforce, volunteers and carers to respond to the challenges of improving quality and responding to growth in demand? How could we develop social care leadership capable of steering and delivering this?

· Firstly develop the strategy. Then set up the national bodies with strong remits in the setting of standards. Train strategy leaders to go out and talk to Social workers, PCTS, Care Agencies, SHA’s, GPs, Care homes etc. Set a tight time frame to get all infrastructure in place, change the law where necessary re qualifications that all involved have to have to practice. Develop an on line documentation database. Develop audit tools. Employ a professional project / program manager to drive through the changes.

f. How could we improve the mechanisms for users, carers and staff to raise concerns about the quality of care? How could we ensure that these concerns are addressed appropriately?

· Give us someone independent to report to that we trust and who has the teeth and the time to investigate properly. Lower the social worker to client ratio. Need for a HSE type inspectorate that is feared but respected.

2. Increased personalisation and choice

a. How could we change cultures, attitudes and behaviour among the social care workforce to ensure the benefits of personal budgets, including direct payments, are made available to everyone in receipt of community based social care? Are there particular client groups missing out on opportunities at the moment?

· Those who qualify for NHS continuous care are left to whims of the local healthcare authority. We have had terrible problems with this, my husband’s care has not been of a nursing standard, nor continuous and getting someone to take on their duty of care is a nightmare as there is no one to go to enforce the law in a timely manner. We have had care agencies walk out on us with very little notice, provide people of so little quality that they were putting my husband in danger. So denying me my right to earn a living, and my husband his right to be cared for. The NHS has cost me £120k+ in lost earnings so far, the lost opportunity to spend some time with my dying grandmother and then I could not attend her funeral. Now I fight again to have the right to see my dying father.

· Re changing cultures etc this is covered in my comments regarding national standards and training.

b. What support or information do people need to become informed users and consumers of care, including brokerage services? How could people be helped to choose the service they want, which meets their needs and is safe too? How could better information be made available for people supported by public funds as well as those funding their own care?

· Social services and GPs must play a pivotal role in this.

c. How could the principles of greater personalisation be applied to people in residential care? Should this include, as the Law Commission recommends, direct payments being extended to people (supported by the state) living in residential accommodation? What are the opportunities, challenges and risks around this?

· National standards for care should include all receiving care. National qualifications should include all staff, nurses aids in hospitals, care homes, and nursing homes. Licenses should detail which standards are applicable and correspond to staffing levels and competencies etc.

· Direct payments scheme should be available to all, where ever possible. Many in nursing homes have legally appointed financial managers, extention of these duties.

d. How could better progress be made in achieving a truly personalised approach which places outcomes that matter to people, their families and carers at its heart? What are the barriers? Who has responsibility and what needs to change, including on the legislative front?

· Social workers need to visit their clients regularly and have the legal duty to do so, whether the client wants it or not for their own good. We have not seen ours for months she relies on emails and telephone conversations, even though she knows we are in a physically deteriorating position.

· Need people in charge of the delivery of care services that have legal teeth to ensure carees get the medical help they need and are not left in the community without the support they need. Our case being one in point.

· The medical system, when placing weighting on waiting lists for operations needs to take into account the home circumstances of the individual concerned. I have been doing dangerous, back breaking work for years now and no one cares.

· The local people involved do not have a legal responsibility to provide a case management type service. This leads to each service passing the buck in complex multi agency cases. The GP defers to the consultants who defer to A&E and social services. No one has the responsibility to take charge for vulnerable people and find workable solutions.

3. Ensuring services are better integrated around people’s needs

What does ‘good’ look like? Where are there good practice-based examples of integrated services that support and enable better outcomes?

Not seen anything good all bad experiences here in Peterborough.

Where should services be better integrated around patients, service users and carers – both within the NHS, and between the NHS and local government services, in particular social care (for example, better management of long term conditions, better care of older people, more effective handover of a person’s care from one part of the system to another, etc)?

In our area this is a disaster. We have been left without adequate help in terms of medical supervision or care provision since I started to ask for help in May 2009. Everyone passes the buck. My husband comes under specialist care of a spinal injuries unit and the local services can’t cope with his specialist needs. Rehabilitation medicine in this country is of a third world standard unless you have the money to pay, as many a discharged soldier is finding out to their cost. People who do not have compensation pots and have on going long term conditions such as MS, Spinal injuries, MD have a very hard time in this country living up to their true potential, because the medical system patches them up and then leaves them to rot in the community with no physiotherapy, adequate OT or care.
Provision of adequate quality accessible housing is also a national disgrace.

How can integrated services achieve better health, better care and better value for money?

For one I would not be spending every day at the moment wondering if this will be the day when he gives up and takes that overdose he keeps talking of, or be the day his body finally gives up the fight against the constant pain. After all his medical people leaving him in the community without the help he needs, for so long.

What, if any, barriers to integration should be removed, and how can we incentivise better integration of services at all levels?

In every case there needs to be one person who is personally responsible for delivery of the service. Responsible for and powerful enough to tie together all the different agencies involved. Every user should be able to give feedback to a central body who then if serious enough a failing be able to investigate in a timely manner. The failures we have experienced have been bordering on criminal neglect and have certainly infringed on mine and my husband’s human rights. We have not got the money to sue or the time to untangle the system to find out who is ultimately responsible, the system should do this for us.

Who needs to do what next to enable integration to be progressed in a pragmatic and achievable way?

Use a case like ours to find the weaknesses in the current system. Learn from it.

How can innovation in integrated care be identified and nurtured?

Can not comment as I have never seen this in action.

4. Supporting greater prevention and early intervention

What do good outcomes look like? Where is there practice-based evidence of interventions that support/enable these outcomes?

Ask for regular feedback from users. Have a change champion in each region whose job it is to spread the word of good systems.

How could organisations across the NHS and local government, communities, social enterprises and other providers be encouraged and incentivised to work together and invest in prevention and early intervention including promoting health and wellbeing?

Need to have a personal legal requirement to provide services. The same person who lets out a care contract must not have his/her performance measured against savings in an organisation. Personal performance measures needed to be weighted towards quality of delivery of service and not financial savings.

How could we change cultures and behaviour so that investment in prevention and early intervention is mainstream practice rather than relying on intervention at the point of crisis? How could we create mechanisms that pay by results/outcomes?

Everyone involved needs to have personal performance measures that count towards career enhancement etc that are weighted towards prevention rather than crisis management.

How could individuals, families and communities be encouraged to take more responsibility for their health and wellbeing and to take action earlier in their lives to prevent or delay illness and loss of independence? How could we promote better health and wellbeing in society?

Over the past years, media coverage and government campaigns have done a good job in this area. So just do more of the same.

How could innovation in prevention be encouraged, identified and nurtured?

As it is now, through recognition of those suggesting it, campaigns etc.

5. Creating a more diverse and responsive care market

a. How would you define the social care market? What are the different dimensions we need to consider when assessing the market (eg type of provision, client group, size of provider, market share)?

· I would define it as an under regulated mess, run by amateurs for a totally profit motive.

b. How could we make the market work more effectively including promoting growth, better information for commissioners (local authorities and individuals), improved quality and choice and innovation?

· By making it more professional, and regulated. See my previous comments.

c. Does there need to be further oversight of the care market, including measures to address provider failure? If so, what elements should this approach include, and who should do it?

· See my comments in section 1. There needs to be recognised national standards , licensing system of staff and providers. There also needs to be an enforcement element built into social workers remits and an audit arm akin to the HSE Inspectorate.

d. Looking to the future, what could be the impacts of wider reforms on the market? What possible effects would the following have on the market: the recommendations of the Dilnot Commission’s report, the roll out of personal budgets and direct payments, and the drive to improve quality and the workforce?

· Unless the government acts to address most of the issues facing older and disabled people, they will end up on filth ridden work house type nursing homes of Dickensian proportions and / or our streets will be full of the sick and homeless, begging in the streets.

6. The role of the financial services sector in supporting users, carers and their families

a. In the current system, what are the main barriers to the development of financial products that help people to plan for and meet the costs of social care?
b. To what extent would the reforms recommended by the Commission on Funding of Care and Support overcome these barriers? What kinds of products could we see under such a system that would be attractive to individuals and the industry?
c. What else could the Government do to make it easier for people to plan financially for social care costs?
d. Would a more consistent system with nationally consistent eligibility criteria, portability of assessments and a more objective assessment process support the development of financial products? If so, how?
e. Would the reforms recommended by the Commission on Funding of Care and Support lead to an overall expansion of the financial services market in this area? How would this affect the wider economy?
f. What wider roles could the financial services industry play? For example, in:

I am not going to comment on this section as my knowledge in this area is too limited, may be highlighting the main problem!

We are still here ! You uncaring *******

2011-09-21T11:12:00.000+01:00

Dear NHS Addenbrookes,

I write to you to express my extreme anger at the way my Tetraplegic husband case has been treated, or actually not treated as that is the case in point. This has culminated in his vital life changing operation due tomorrow being cancelled. Your staff have, so far, failed to seize an opportunity to end the 2 year suffering and fight with the UK NHS system that my husband and I have had to endure.

Terence had a test dose of Intrathecal Baclofen at the specialist spinal unit in Stanmore in January of this year, after exhausting all the possible oral medications that you could think of. He had developed what he thought was a good patient / doctor relationship with Dr XXXX1 locally he having helped him secure a regular supply of Sativex, which helped his severe spasticity / spasms to a certain point. Having found a doctor that he felt he could trust and knowing how difficult the long journey to Stanmore was going to be for him, he asked the good doctor for a referral ( March 28^th) to have a Baclofen pump fitted at Addenbrookes. Thinking that since this Doctor seemed to understand the seriousness of the predicament he was in would write a referral that would expedite his treatment. Terence’s own muscles are basically crushing his insides.

So we wait. I then have a conversation with the booking people and find out that Terence has not been given any sort of priority and has been deemed a non priority case.

Terence finally gets an appointment with Mr XXXX 27 June. Sees Dr XXXX1 on July 1^st following, where it should have been more than evident to the good doctor that Terence was getting into medical difficulties as sitting talking to him he was having difficulties talking to him and breathing at the same time. At this time I am begging anyone who will accept my emails that Terence is getting into even more difficulties. On top of everything he has a Klebsiella UTI , which having contacted Mr XXXX we were led to believe would be treated immediately prior to surgery, the micro biologist not wanting to give Terence another IV antibiotic course before then.

So Terence and I hang on, and hang on, every day making the decision as to whether we should really be going to the local A&E , as his pain levels rise every day, as when he sits upright for any length of time his diaphragm locks up. Letter sent to Mr XXXX regarding. Every time we have asked for help we have been directed to our local A&E department which is this case is wholly inappropriate. Terence can not use an emergency ambulance because he can not without special measures be placed on a trolley, then when you go through the self admission reception process at an A&E no cognition is taken of pre existing conditions, we know having endured several 6 hour processes where I have had to remind everyone that Autonomic Dysreflexia is no joke. We know what he needs it is this operation and urgently, all of which our local hospital can not sort.

09 September – not able to see Dr XXXX1 at Peterborough to pick up re supply of Sativex as caring solo for Husband and he not well enough to make trip in our car.

12 September – not able to make pre operation assessment email and telephone call to explain.

16 September – phone call from Ward Nurse Practitioner saying that special arrangements for Ambulance transfer for this week would be forthcoming on Monday.

19 September – phone call from Steven Peebles 01223 349323 to state operation had been cancelled.

Failure #1- To have a priority waiting system in place that recognises the effects of not only the illness of the patient but the effect to those family carers.

Failure #2- for all medical staff involved to act upon the letters from GP,+ the emails from me as solo carer to get this operation scheduled earlier or at least examine + reassess patient.

Failure #3- Lack of meaningful Communication between all concerned.

Failure #4- Lack of action to save the situation when it first became apparent that Terence was having travel difficulties. Ie 12^th September.

Failure #5- Lack of appreciation of particular difficulties experienced by the severely mobility impaired disabled, bordering on discrimination.

Failure #6- Lack of recognition that this operation is one piece of a jigsaw for Terence’s on going care, ie has already had a total knee replacement operation cancelled, waiting to have scans on his one remaining kidney, waiting to put in place a care team.

All of this means that I as solo 24hr carer, as caring for Terence is a 24 hr job have been left to yet again pick up the pieces of a system that does seem to really care about its patients. Leaving me utterly disgusted with all of you.

The Morning from Hell, Operation Cancelled.

2011-09-19T11:44:00.000+01:00

Phone call received this morning from a registrar at Addenbrookes, cancelling Hubby operation. So we have been waiting, struggled in fact for six months on a waiting list for this operation to have it cancelled. We have been given a few excuses.

Excuse # 1 : because we asked for extra measures to help us get Hubby to the hospital, via the ambulance. He probably needs a diazipam injection and extra monitoring for the journey. Due to his spasticity / pain etc.

Excuse #2: he missed his pre assessment examination, because I couldn't let him be up in his chair for 7 hours straight, he was particularly ill last week. Woke up with shivers, pain etc.I have been alternating between bed and chair on a 2-3 hourly basis since last week, through a 24 hour period. Why didn't they discuss this last week, find a safe way to transport him to the hospital, then keep him in until his op.

WHAT THE HELL DO YOU HAVE TO DO IN THIS COUNTRY TO GET THE MEDICAL HELP YOU NEED ?

Already down, Life just loves to kick you again.

2011-09-09T07:04:00.000+01:00

As if things were not bad enough trying to cope with the day to day struggles of being a 24hr carer of a very sick husband, I get word this week that my father has terminal lung cancer. Also that my brother who lives with him has been made redundant.

My father being ex RAF is coping quite well with the news and says as long as they control the pain he will be fine. I am left wondering if his service in the RAF is somewhat to blame as he and his colleagues were on the Christmas Islands during the atomic tests of the early 60's, told to have their shirts on and turn their backs to the blasts as the bombs imploded under water.He has a number of photographs of mushroom clouds in his collection. So that along with his heavy smoking which he gave up 6 years ago, means that he will die gasping for breath as his father who died of emphysema did before him.

With treatment they say he has 10 months left at the most. So I hope I will get stuff sorted here sufficiently so that I can spend some time with him before he passes.

News on the home front is about the same, Hubby should really be in hospital right now as he is so ill but every one in the medical profession shrugs their responsibility, saying if it gets too bad go to A&E. We seriously considered it last Friday as he was in so much pain and his breathing when sat upright is very poor. Then we thought it through, we would have to sit in A&E for up to 6 hrs while they decide to admit him or not. I would have to constantly tip him back in his wheelchair to maintain his breathing and blood pressure as putting him on one of their trolleys would be dangerous as there would be no way to control his spasming legs on such a narrow bed.Then who at our local hospital would be qualified to help him, we have seen the pain specialists before they were useless and there seems to be no oral medicine he can tolerate to ease his spasticity short term. So we decided to make a 'hobsons' choice and stick it out at home as long as we can.

Monday I will have to get him across to Addenbrookes an hour away to see the consultant surgeon and ward manager. I am kind of hoping they open their eyes to how sick he is and admit him pending his operation on the 20th. But no doubt I will be left to struggle on as usual, because they don't give a shit about the holistic well being of their patients or those who care for them.

May be some light at end of very dark tunnel

2011-08-17T10:01:00.000+01:00

Well what a week, last week was.

We got an interesting phone call from the city housing people to say there may be a fully accessible bungalow available soon in one of the prettiest villages near here. It has not been fully finished off yet so if we are successful, there will be many cat1 waiting list clients who will want, we may get the chance to have a say on what accessibility things we need to make it work for us.

Then on Saturday we received a letter to book an admission for the vital operation that hubby needs to get our lives back on track. I rang first thing on Monday and was somewhat disappointed as the earliest they could offer was 21st September, not long you say. Well it is when you are existing in a living hell, full of pain, no sleep, cant eat properly and feel like your own muscles are crushing your insides.

Then on top of that he has a urine infection that they will not aggressively treat until he is in hospital prior to his operation. This makes him even stiffer and his spasms even more severe. It also means that 3am in the morning I am often found giving him another urine catheter.

Grit our teeth and get on with it as usual as no one in the medical profession, listens or hears our cries for help, no one gives a shit, and don't we know it.

Ground Hog Day...

2011-08-04T11:09:00.000+01:00

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.

I'm here but where are the professionals ?

2011-08-02T10:07:00.001+01:00

August 1^st 2011:

00:20 Go to bed. Manually lift into bed. Work on TDB’s legs to get him settled.

00:45 Finally get to lie down myself.

02:30 Reposition TDB’s legs.

03:30 Reposition TDB’s legs.

04:20 Reposition TDB’s legs.

05:30 Needs Catheter doing early. Sit up on edge of bed. 500ml collected.

07:00 Reposition TDB’s legs.

08:10 Get myself up.

08:30 Get TDB up. Make coffee + give him 250ml of Cranberry juice.

09:00 6 sprays of Sativex taken.

10:00 TDB does not want anything to eat. Wash and give shave. Sitting up difficult, breathing a struggle, hip spasms bad. Put him back to bed to work on his legs for awhile. Get him back up 11:00.

11:45 Catheter done, darker yellow 250ml. Stretch legs out again in wheelchair. Pain levels quite high again today, hip / leg spasms bad. Took 2mg Detrusitol.

12:15 Cook bacon + egg sandwich which he manages to eat.

12:40 Stretch TDB’s legs. TDB watching TV trying to keep as still as possible to avoid pain.

15:00 TDB put back to bed. Reports bladder snatching like he needs to go to toilet. Exercise given on bed. Takes 2 Neurofens.

15:30 Start to prepare dinner, corned beef stew.

16:30 Got TDB out of bed. Exercising him before hand. He then took 5 sprays of Sativex. Says he is coping with painful snatching of leg / hip muscles today but feels strong enough to deal with.

17:30 Catheter done early due to snatching feeling in bladder.

17:45 Dinner served.

18:30 Pudding .

18:45 Leant forward as feeling out of breathe and tight across chest. Put back again will watch for further signs of distress.

20:00 Detrusitol 2mg. Feeling flushed. Antibiotics taken.

21:00 Extra Catheter, mid yellow 250ml. Both go to lie down for a couple of hours.

23:20 Get up. Brush teeth get tablets ready.

00:00 Catheter done, mid yellow 150ml.

August 2nd 2011

00:25 Tablets taken. Back to bed.

00:40 Work on TDB’s legs, get to bed myself.

01:45 Reposition his legs.

03:30 Reposition legs.

06:00 Catheter 350ml mid yellow.

07:00 Reposition legs.

08:10 Reposition legs get up.

08:30 Get TDB up after working on legs. Says back & groin pain very bad today. TDB needs to wear shorts today due to cleaner coming at 10am.

09:00 Coffee & Fiber orange drink for TDB, bowel day.

09:30 Wash TDB.

Same thing day in day out 24 hour back breaking care with no breaks....

The Uncaring Caring Profession

2011-07-26T15:32:00.000+01:00

I sit here today in constant eye contact with my ailing hubby, wondering what is going to happen next. He is sat as still as possible as every movement causes pain. Over the last two weeks I have contacted the medical people involved in his care and met with a wall of silence. I told the GP that every 2-3 hours he was screaming out in pain and clutching his chest, the reaction, silence. Hubby has told them that a Klebsiella UTI was causing him grief with extra rigidity and spasms, the reaction a stupid letter implying that we had been telling everyone that our local hospital are refusing to treat Hubby, which is not the case. We are not stupid we do understand about resistance to antibiotics.

Take him to A&E I hear you cry.

I could do that but that would be rather cruel in Hubby's case as it on average takes 6 hours to get through the process, meanwhile he would be sat upright in his chair in pain, with breathing difficulties, he can not safely lie on the trolleys they have, his body being too spastic & contorted. They would then order an x-ray to check out the knife like stabbing pain in his back and spine, we would trot over to the department to be then told sorry we cant take an x-ray of your hubby as he can not sit still long enough or straight enough for us to do it.

I tried this morning to get him admitted straight onto a ward, where I could set up his special mattress and provide an environment for a doctor to at least check him out and maybe put our minds at rest. Sorry I don't feel comfortable dealing with your hubby's case, get in contact with your spinal injuries unit. Our spinal injuries unit is 80miles away in London. We rang this doctor yesterday left word with secretary that it was urgent, could he not have told us that yesterday. Thanks for nothing !

So here we sit looking at each other waiting for the inevitable, Autonomic Dysreflexia attack , heart attack, stroke etc etc...wondering whether the spinal injuries unit will phone us to come on in or whether they will slam a door in our faces as well.

This is how it all went wrong !

2011-07-17T11:32:00.000+01:00

Many patients having dealings with the authorities will have a list like this. A list of missed opportunities to help, a list of promises of help that don't materialise, a list that hides the hidden days of relentless pain and suffering for carer and caree, a list that will eventually if someone does not act lead to a pointless, unnecessary early death of someone who I dearly care about. Where are the human rights lawyers when you really need them?

Sunday yet another day to just get through, helping as much as I can to ease pain and suffering.

5 days on quite obvious no one gives a shit

2011-07-16T17:17:00.000+01:00

The real story of caring today and the real pain of being on a NHS waiting list.

It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.

I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.

I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.

Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....

Can things get any worse ?

2011-07-12T13:19:00.000+01:00

Monday we had a long telephone conversation with our GP as Hubby is steadily deteriorating with what we think is the symptoms of the Klebsiella UTI, but the Microbiologist does not want to treat because there are limited antibiotics that can be used on this strain, last time it only seemed to reduce the levels and not totally kill off the infection. So the plan is wait until the operation for the Baclofen pump is set , give antibiotics in the lead up to, hoping that it does not become a full blown Kidney infection in the meanwhile. Hubby only has one Kidney.

What do I mean by deterioration.

Over the weekend, he reports that he is losing what poor function he has, in his arms and fingers. Has starting dropping his drink bottle. All his joints feel even stiffer than usual, which has lead to a very painful groin strain and unbearable pain in his lower back. He can no longer go through 6 hours in between catheters, on average 4 hourly at the moment. His Diaphragm feels very tight restricting speech and depth of breathing. Feels very weak, and bilious. Sense of touch is going getting numb fingers. Neuropathic pain (pins & needles, burning sensation) in feet even worse than usual. Very Painful Spasms in legs, left hip + arms increasing, increasing pain in arthritic left knee. Periodically his Autonomic System is also starting to show signs of internal distress as he is flushing up as if body is getting ready to have an attack, at those times getting sharp pain behind left eye, + feeling very hot. Twice during the weekend, when breathing + pain becoming an issue, I have felt totally out of my depth and have got extremely close to ringing 999.

I am caring for Hubby on my own due to our care agency walking out on us two weeks ago, trying to physically push through all the stiffness, spasms etc to carry on physiotherapy throughout the 24hour period just to get him through the day and night. I am also recovering from a summer cold that has left me with a hacking cough.

Hubby needs treatment for UTI now before it is too late quickly followed up with the fitting of the Baclofen pump.

I'm Not Superwoman.

Just a note to make a wares,
just in case someone cares.

Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.

Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.

Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.

Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.

Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.

Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.

Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just
me.

Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.

Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.

Every time we ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS IT JUST ME?

Can things get any worse ?

Peterborough Disability Forum in the Community

2011-07-06T16:06:00.000+01:00

Sharing this email from my friend Bryan so that it reaches a larger audience.

Peterborough Disability Forum is going out on the road. Talking to organisations and groups of people that can’t always access the main meetings at the Town Hall or Cresset Centre.
The Disability Forum was established in 2009 to give disabled people a voice in the way the city is run. And this is your chance to have your say on issues that concern you, your family or carers. Access, transport and health and wellbeing are just some of the themes discussed at these meetings and there is every chance an officer from the council or health authority might be available to answer many of the questions you want answering

Working in partnership with the city council and NHS/Primary Care Trust, the Forum has been involved in the reopening of St Georges Hydrotherapy Pool and the creation of the Changing Places toilet facility. If you notice the new accessible parking bays and improved pavements in and around the city centre, that’s probably down to the ongoing work between the forum and City Council

Would you like to find out more about Adult Social Care or sports and fitness programmes for people with disabilities?
Do you want to find out how you can contribute to one or all of the Forums sub groups and make a difference to the way the city works?

If you run an organisation that would like to hear more about the work of the Disability Forum and how you or your group could get involved
Please contact Bryan Tyler email : dialsport@gmail.com

Best wishes
Bryan

Bryan Tyler
Disability Forum Manager
DIAL Peterborough
01733 265551

ME the human hoist.

2011-06-30T11:35:00.000+01:00

Yesterday our under performing care agency finally gave up, took their ball and went home. Making our one remaining carer redundant. Leaving me yet again a virtual prisoner at home looking after hubby 24/7 on my own.

What is the problem? the crux of the matter is, that until the local medical profession wake up and realise that without the surgical intervention needed in this case hubby will continue to be care agencies worst nightmare, someone with massive, H&S non conforming manual handling issues. He can not use a hoist because of the pain / spasms. He can not sleep because the spasms constantly jolt him awake. He needs constant physiotherapy to get through the day, in the form of extreme, forcible straightening of his legs.

All of which everyone expects me as sole family carer to carry out 24/7, surviving on glimpses of sleep in between his spasms. Very hard physical work with no rest, constant day in day out.

23:00hrs 29 June - both having tried to rest in bed for a couple of hours, we get up again. I help brush his teeth, give him his pills. I feel like crap and just want to go to sleep.
Midnight - carry out his urine catheter.Wait for twenty minutes and then back to bed again.Which involves me manually lifting him from his chair to his bed.
01:00 my head finally hits the pillow after working on him, stretching his legs, for 20 minutes trying to get his body to settle.
02:20 he wakes me as his legs have started to spasm again. Drag my tired bod out of bed to help him settle again by forcible straightening his legs, stretching him out etc. He can not settle because he feels like his back is twisting, so I sit him up over the edge of the bed starting the whole regime again. Finally getting back to bed at 02:40.
03:45 he wakes me again, needing an extra urine catheter doing and his legs are spasming again. I finally get back to bed at 04:05.
06:00 up again to do another catheter, more physio etc. 06:15 lay down again.
07:30 his back is in such pain that I have to start to get him up. Try and wake myself up with copious amounts of coffee, finally getting him up at 08:15, which you have guessed it involved more manual handling , lifting by his human hoist, ME.

That's the night shift done, so on with the day which will involve several trips back to bed to carry out physio, and all the stuff that a day shift entails, washing, feeding, entertaining, campaigning etc etc...

This is our life day in day out, we ask for help, but it never comes, day in day out, no rest, no change, no freedom.

Another visit to the local hospital

2011-06-16T10:48:00.001+01:00

Unfortunately Mr. T. caught another nasty urine bug and ended up on antibiotics in the local general hospital. The staff were great when we explained what was involved in looking after his spinal injury and decided that I was right that they could not carry out the Health and Safety rule breaking duties that are the only way we get through the torture that is our days. So a mattress was found for me to sleep on the floor so that I could as is my life attend to the forcible straightening of legs that needs to be performed during the night. I think they were also relieved that he would be one patient that they did not have to worry about feeding and toileting as I took care of it all, during his stay.

I was hoping that someone would write a report to social services or some authority helping us with our case for urgency in getting Mr T's Baclofen pump fitted. As they all told me I should not have to be doing what I have to do, ie acting as a human hoist, on duty 24/7 etc etc.

He had it noted that his pain levels were not under control but no one was interested, only wanted to treat what he was in for, getting him back to the community care as soon as possible and out of their hair. Sadly no one gives a sh*t about the holistic well being of the patient any more.

One thing I found alarming on my visit was the provided commode.

it had a hard plastic seat that someone with older thin skin should not be using for fear of pressure sores, also the foot tray had been removed meaning that the disabled are having their feet dragged across the floor, increasing the chances of falling out of the commode. The one we had was particularly dangerous as it had the tray metal ring still attached, a trapping point for patients feet. VERY VERY DANGEROUS...

Poor Mr T had to dragged back home for a shower where he could be safely handled, with bed baths in between.

I do wish people who buy these things would put some more thought it to it before they buy.

Profoundly Upset by Panorama Programme last night.

2011-06-01T10:27:00.000+01:00

My brother contracted TB Meningitis at age 2 some 42 years ago, leaving him with severely limited mental capacity and no speech. So from the age of 5 he has been in various types of residential care.

Unfortunately throughout his life we have come across abuse like this and have been powerless to stop it often finding out at a very late stage that he was being abused. So late in fact that his sunny go lucky personality had been altered, he started banging his head in frustration, pulling hair etc. He has been tied to a chair to stop him from running around, given medical coshes.

At the moment he seems to be happy and well adjusted, but the lack of suitable facilities because of recurrent government cut backs means that he lives nearly 100 miles away from his family, who would love to interact with him more and include him as much as possible. The whole system is cruel not just the caring aspect.

I of course like many watching last night was profoundly upset watching the programme and do hope that justice will be seen to be done. I suspect they will get not much more than a slap on the wrists though. I do hope I never catch anyone abusing my kin.

The regulator of these services needs to take a long hard look at its self but they wont they are so arrogant, as shown by the spokes person that would not admit that their inspection systems are totally flawed. It is the same with NHS hospital inspections, everyone cleans up their act during the inspections. There needs to be more sneaky inspections to catch the sneaky behaviour.

One suggestion I have for the CEO of Castlebeck that one of my family who runs a day care centre in the USA employed as a deterrent / reassurance measure is the installation of web cameras that relatives subscribe to online so that they can check on their children at any time during the day. Not a total solution as there will always be blind spots and areas where cameras can not be put ie bathrooms, but it is a good start to reassure his clients that they will not be abused and that they take the matter seriously enough to do something about it.

Lastly I think one of the root causes of this is the type of people who are coming in paid caring, as a minimum wage job, not vocation.

Why do people constantly take the pi** and think we don't know they are ?

2011-05-24T14:13:00.000+01:00

Some recent examples of this,

Example 1 - letter back from Peterborough Hospital following complaint made regarding xray machine landing on hubby's leg. "the safety feature on this machine is working within safety parameters", if it was safe why did it hit my husband with such force it threw him forward in his wheelchair hurting his leg in the process ?

Example 2 appointment letter for an appointment in 10 weeks time even though we have stressed the urgency of the situation to several people who seem at the time to agree with us. After phoning up, get it changed to 5 weeks time which is more reasonable.

Example 3 still interviewing carers that have absolutely no work or life experience, despite constantly saying what we need.

Example 4 I say I need financial help to take an educational course and get offered an eighth of the cost, it might as well be a single penny for the use.

Example 5 local new hospital think it okay to put cobble stones from the disabled car park to the front entrance. Arrive shaken not stirred !!

Our Holiday in Tenerife or "that will be an extra 20 Euros"

2011-05-09T14:19:00.001+01:00

The Journey to the airport.

02:45 on the 26th April we set off for Luton Airport all packed and ready for our holiday in the sun. We arrive at the airport surrounds at about 04:00 and phone the people that are going to “meet and greet” us and take our car away for storage during our hols. I mistakenly think we will be able to unload TDB right in front of the terminal and meet the assistance team right there. No we have to proceed to a drop off zone which is at least a 5-10 minute walk away from the terminal. Guess what the disabled drop off zone is closed for our use and is not of much help anyways as there are no significant dropped curb areas to decamp from the car. So I park up unload the luggage and then have make a herculean effort to get TDB out of the car as the seat is now at a very uncomfortable height for me to lift him into his chair curb-side. It is cold outside and even though the help point has a small shelter TDB is getting very distressed at being cold. As many reading this will know having a spinal injury means that more often than not you can not maintain your own body temperature. I am left in the uncomfortable position of not being able to leave the luggage to get TDB in the warmth of the terminal straight away because it is too far away and to leave the luggage a security risk. No shelter in the car as there is a 10 minute waiting limit. After what seemed a very long wait because of our special circumstances, but only ten minutes, the assistance guy appears and helps us to the terminal.

Lesson learnt , if you are very disabled on your own or just the two of you with luggage you must telephone Luton Special Assistance (07979627278) to meet you as you arrive so that you do not have to wait in the cold. A letter is on its way to Luton Airport regarding the unsuitability of their disabled drop off zone and the fact that it was closed on our arrival. We are all used to ground level decamping from our cars as in the parking spaces that we all use so we all need those dropped curbs. We need somewhere warm to wait if the assistance is not going to meet us not the open bus shelter arrangement as currently provided. Also are the help buttons at a height that can be accessed from a wheelchair ?

Luton Airport Terminal.

The special assistance people are generally very kind and seemed to understand if some of their clients are a little grumpy at being man handled. After checking in with no problems, much relief felt when they did not even question our extra bag of medical equipment except for the fact that I was not allocated a seat directly next to my Hubby. After security and passport control we were taken to a special waiting area to await being boarded. We left carrying out Hubby’s urine catheter as late as possible as it would be touch and go that we would land in sufficient time within the six hour window. Unfortunately we were delayed by an hour so all our planning was to be for nought and we ended up doing it discretely on the plane before we landed. We were loaded up onto a scissor lift pod pre boarded via a very uncomfortable aisle wheelchair. This model was a lot lower than the one provided at the bigger airports so makes transfers a lot harder. On board due the flight being very empty the Thomson air crew were very kind and realised that I needed to sit next to Hubby to help him during the flight. I had to hold onto his legs during take off and landing and during taxi as the bumps made his legs spasms. The extra leg room afforded was not sufficient to stretch out his legs but did mean I could deal with them when they started to move. Whow! the seats on these budget airlines are thin and there is no where to put your arms.

Tenerife South Airport.

The Aisle wheelchair here was even worse as it had no arm rests making Hubby’s lack of trunk control very dangerous as he needs support to sit upright. The special assistance people got the hump when I would not let them push his wheelchair and wanted them to help instead with the luggage. The reason is that Hubby’s small wheelchair wheel at the front keeps hitting the back of his left heel and I know what to do to stop from happening, I know they would not, I was trying to prevent them getting shouted at. You can’t help some people. We were met by the Accessible Travel rep at the gate and shown to our accessible transfer bus. Hubby did not enjoy the journey he hates being strapped in the back of such vehicles in his wheelchair as it makes him feel sea sick. 25 minutes and we arrived at the hotel.

Mar y Sol Hotel Los Cristianos

The hotel looks pretty from the outside, white washed walls, greet the traveller, waterfall in front and little seating area with an interesting wooden walkway guiding you to the open spacious reception. On display at the moment is a golf cart that makes playing Golf a possibility for the less non able amongst us, i.e. Paraplegics with upper body strength. The check in procedure was much like other hotels with a porter to take our luggage to our room. We were assigned Room 3316 which to get there you take the lift from the 5th floor reception down to the 3rd, walk along a corridor at the back of the restaurant , past the table tennis, oversized chess, and dart board. Then past on the right, is the first pool , a paddling pool that is used for walking therapy, steps in one end ramp the other and why we were conned that there was a zero entry pool on site. Next, a large pool for serious swimmers with hoist. We then took a metal ramp up to our floor, from which we could see the super heated pool and hoist.

Our room was an immediate disappointment and reminded us of some of the seedy motels we had stayed in on our many road trips in the USA. It had not been redecorated since we guessed the 1980’s judging by the style of the fabrics. We felt the room could have been a show case for the hotel as being on the end of the building it had extra windows letting in all of that precious light. The “room” was made up of a bedroom, bathroom and sitting cum kitchen area, plus spacious balcony directly over looking the warm show pool and restaurant.

The Kitchen Area : supplied with a gratis litre of water on arrival but no kettle, cloths or washing up liquid. Cupboards have 3 saucepans, chopping board, plates, glasses, utensils. 2 ring cooker, Oven and small fridge. With everything being so old it all looks grubby / dirty. So if you get one of the older rooms be prepared to do some cleaning if you are a carer for any immuno-suppressed traveller. There was also a dining table and three chairs.

The Living Room Area: Tiled floor through out. Old style TV and white painted stand, Sofa that can be made up into an extra bed, coffee table that we put out of the way as it impeded Hubby’s movement in the room, another small table with the phone on, white painted book cabinet, and a wicker chair. We looked around for the TV remote there was not one so we dialled reception. “That will be an extra 20 Euros” we were told much to our annoyance having already paid an extortionate rate for the hotel just because it was supposed to have facilities for the disabled. Once we had obtained said remote it was debatable whether we should have bothered, we could of course improve our German and Spanish as the channels mainly catered for these clients, English speakers were supplied with Sky 1, Sky News, Eurosport, Cartoon Network, Sky Sports1. One of our funniest moments was watching a Tommy Lee Jones film in German that when the Mexicans were speaking had German subtitles, I know small things please small minds. And then as a reminder of a holiday we took many years ago in Mexico, where channel 6 was the sex channel, we had what we christened channel dirty thirty.

The Bedroom: plenty of storage for clothes as supplied with built in 2 side tables, wardrobe and chest of drawers. Also door access to balcony. Door width could have done with being a bit wider for us as we had difficulties getting the electric wheelchair in and out of the room. Hubby had a hospital type bed which we paid a pretty penny for ( supplied by LoRo equipment hire) and already in the room for us on arrival. Disabled peeps BEWARE ! the mattress is not of a sufficient thickness to guard against pressure sores and because the bed had metal latts underneath, extremely uncomfortable. It has left Hubby with a sore achy back. Also if you want side safety bars, much to our annoyance “That will be an extra 20 Euros”. We had already paid handsomely and now it was beginning to seem like everything we asked for was Extra ,Extra, Extra. My bed was not much better , one up from a camp bed with a water proof mattress cover that did not fit. This hotel also uses the old fashioned, sheets, blanket and bed spread, which some will like others not, personally I prefer Duvets. The pillows were very worn , some thinner than others. But having said that all the linen seemed to be old but clean.

The Bathroom: Ours had a small bath plus a wet room area. The sink has room for wheelchair bods to sit underneath. Taps are not easy use taps, but they have tilted the mirror to make use by those seated easier. Standard height toilet that a commode can be placed over. Again our problem was safety as there were tiles missing and the water did not run away down the drain making the tiled floor extremely slippery for me as an abled body person. There also does not seem to be hot temperature safety cut out. On the plus side the shower did have a hose long enough to reach under commode, but using the controls by those with limited hand function would not be possible without help. There seemed to be no mechanism to extract steam from the bathroom. Two small pieces of soap were provided and plenty of towels.

General: most light and power outlets were at a height that made them accessible for those in wheelchairs. Please note there is no heating in these units therefore if like Hubby you are unable to control your body heat you will need a heater and of course “That will be an extra 20 Euros” . We have a lot building work going on around our road at home so one of our desires was to get away from the noise and dust created by construction machinery. No such luck we had drills and power saws three rooms away, painters right outside scraping away at the white washed walls, and inconsiderate fellow guests allowing their doors to slam behind them. So by day 2 we were not happy bunnies and asked to speak with the tour rep. Platitudes were exchanged , but we were left with the like it or lump it feeling so tried to make the best of a bad situation. Also to note you will not find the usual information folder in your room, so will have to hunt for information regarding nightly entertainment, evening buffet theme, a la carte menu. You do though get given a leaflet which shows times and some of the general information that you will require.

The Restaurant: you have no choice at the hotel in that you at a minimum have to take half board and the dreaded hotel buffet. Having travelled the world very few hotels do this well, with the exception of the top hotels in the UAE who have it down to a fine art. Unfortunately as we pretty much expected, food was not kept hot and good ingredients were ruined through over cooking and standing. Fairly good choice of cold salad type foods. Most cooked hot meat were cheap cuts, dry, boring and rubbery, even that which the cook freshly prepared in the pan. Distinct lack of hot vegetable choices. Canary style potatoes were nice if you could pick out the ones that did not have black rotten bits in. French fries style chips available. Several different types of bread including some of the more interesting German style rye breads, some times fresher than others. All of the pastries, we tried, small pieces of cake, including breakfast Danishes, croissants were stale and extremely unappetising. In other words you would not starve but the hotel good do a lot better with the money you pay. The A La Carte Menu for during the day was to say the least unimaginative and not good value for money paid. Alcohol was more expensive than that found in the bars on the sea front and a large bottle of water cost Euro 1.70 which same could be bought in local Spar shop for 45 cents if able to get away to go there.

The Showcase Pool: everyone seemed to congregate around this pool being the warmest of the three, having fountains and water features. The hoist was in constant use and most of the time a life guard was on duty to help with this. SAFETY : please note it is up to the guests concerned to make the determination as to whether your particular disability precludes you from safely using this hoist, the life guard will not bar anyone its use. This led Hubby and myself watching in horror and holding our breath a few times when we saw people using said equipment that really should not have taken the risk. Personally it is my opinion that you take a huge risk of falling off if you have limited trunk strength, arm function or have bad spasms. Therefore Hubby falling into all three categories could not use this piece of equipment and was not able to use this fine pool for the duration of his stay.

The Staff: most we met were helpful and flitted happily between Spanish, German and English with ease. Having studied all of these languages on and off for many years and still not being fluent in either made me rather envious.

After filling in a feedback form I had a meeting with the German owner and founder of the hotel. He seemed to be genuinely disappointed with our reaction to our experience and explained that many of our problems were due to there not being the Hotel Guest Relations Manager available at the time of stay due to sickness. Apparently a Kettle could have been made available plus cloth and washing up liquid. All the extras we had to pay were due to the setup of the contract with Accessible Travel who should have explained and asked a lot more questions regarding our requirements prior to us paying. Most Travel Agents have a fully inclusive price for their clients so that they don’t get hit with all the extras. He also thought that due to Hubby’s level of disability we should have been put in a refurbished room type with extra wide doors, better safer bathrooms etc. I had a look at some afterwards, the rooms are like night and day! We would have managed a lot a better in one of the newer rooms.

For my part I will be sending the Hotel my detailed feedback and some links to manufacturers of pool ramps so that all guests can get into his pools safely no matter what level of disability they have.

http://www.thewheelchairsite.com/wheelchair-pool-ramps.aspx
http://www.recreonics.com/pool_access_ramps.htm
http://www.a1-wheelchair-ramps.com/types/wheelchair-pool-ramps

The Journey Back.

The Orobus picked us up and this time Hubby was more to the front and had a lot better ride. The Driver helped us with our luggage to the assistance point, where we checked in. Then for some reason even though our flight was going from gate 21 we with a few other disabled peeps were left at gate 5. Where we waited and waited. Eventually they re appeared and took us yes you have guessed it to gate 21. To our utter horror people were already boarding, so instead of being able to get Hubby settled before the masses started filing past we had to fight for space against the able bodied travellers. I hate it as I then feel rushed and pressured . I am doing all the safety lifting so I could have done without this. On top of this some guy and his wife were pissed off because they had just paid for extra leg room and we needed to take their seats. The Thomson Flight Manager thank goodness stuck up for us when I explained what I had to do during the flight to secure his legs. We thought we were off only to have to return to the parking spot again as someone had not done their job with one of the water valves. So of course I had to gain permission again on a full flight this time to discretely carry out Hubby urine catheter on board. Trying to explain to someone not medically trained that if I did not do it Hubby would get seriously ill, not sure whether she believed me but at least she tried to be understanding. On our landing back we found out that the people handling Hubby’s wheelchair in Tenerife had partially dismantled it. So he is already loaded up in the Aisle wheelchair at this point in severe pain and they want me to put him in his wheelchair with no back to it. On top of that they bash his right knee on the side door to the scissor pod. Poor Hubby… treated like a piece of meat… yet again… but at least it did not cost us another 20 Euros for the privilege.

Another Scary Week

2011-04-21T11:17:00.000+01:00

Hubby has got another UTI and isn't feeling very well. He various difficulties with many antibiotics and needed to have hospital grade stuff via an IV. Did not want it at home because of the possibility of an Autonomic (AD) attack if something went wrong, so off on Tuesday we trotted down to the local hospital, where we were kept waiting 6 hours in total for a 25min procedure. Told to come back on Wednesday for 2nd dose. So I rang on Wednesday to get the best time to turn up to be told we don't want him here he has to have it done in the community.Apparently only a Consultant can say so out patient treatment in a hospital our GPs had unwittingly overstepped their area of authority. So we waited for a senior nurse to give his IV in the evening and hoped everything would be okay. Especially in the light that he wouldn't get to hospital in time if an Ad attack did manifest itself as he can not travel in an emergency ambulance due to his spasticity. Everything went okay.

Thursday having been up most of the night with him as he was in so much pain, I rang the GP to ask for help, but as usual no one knows what to do. So we agree to just top up his Butran patches for now as does not seem to able to take anything else in high enough doses to make a difference. Stuff that he could take makes him feel worse than that we are hoping to overcome.

Meanwhile I can trying to straighten legs that don't wont to go straight, watching him trying to be sick, and writhing in pain that I can not treat.

So its another scary week here without the medical backup that we need for my piece of mind.

Day to Day Frustrations

2011-03-31T14:17:00.000+01:00

I thought today I would write of some of minor irritations of being disabled in a wheelchair. Minor because they are not life threatening but irritating nether-the-less as they make a difficult life even more so.

Going Shopping:

Well first you have to think about if there is some where safe to park or else you will have a wasted journey. For example when we go for a haircut in Werrington P'Boro there are no assigned parking spaces so we take a gamble every time when we park that some arse-hole does not park tight up against us so making it dangerous for me to get him back into the car. We have a label on our car saying we need extra room on the passenger side of the car. Same when we go to Physio at Cygnet park. Now there is a development that really annoys me, effectively brand new but not disabled friendly at all,difficult entry doors, exit release buttons out of reach, no designated parking. Any independent wheelie user would have to stand outside waiting to be let in and if the business is on the top floor hard cheese in many cases as lifts are far and few between. All probably within the relevant building code but unhelpful nether-the-less.

Shopping in malls is a hit and miss affair, some stores better than others regarding access. In the Serpentine Green centre near us WHSmith deserves a demerit as if a wheelie wants to use the sweets dispenser or get to the fridges on the immediate right hand side of the store there is not enough room to get your machine round.

My biggest bug bare is Sports Direct in all stores I have visited there are parts of the store that are inaccessible to wheelie shoppers. A special mention to the one in Leicester city centre in which I felt extremely uncomfortable as should there have been a fire or emergency evacuation I am pretty sure we would not have made it out safely. Everything is so on top of each other there are no clear lines of sight to the lifts, or able body exits. The tills are at the back of the store and badly laid out for access by chair. Everything is piled high making their stores both difficult to shop in and claustrophobic.

Sale time in most clothes + book stores is a nightmare as many retailers forget about safe wide enough access and egress in their hunger to promote their sale goods. Other stores do not adequately control staff carrying out stock replenishment and leave new stock blocking up the aisles, getting out far more than they can deal with at any one time.

Oh and then there is electrical stores, including Tesco's, Curry's, Comets. They showcase 3d TV's with the glasses in display units that make it impossible for the average wheelie to use as the bases prevent them getting near enough, oh they will if you ask get you some glasses out of the back, but again you are being treated differently highlighting your disability. Then there are those displays of laptops that you cannot use as they are stuck to the counter at a height that makes it impossible for you to try them out like everyone else. And lets not forget Tesco Direct and Argos where their catalogues are on desks way too high for the average wheelie user.

Eating Out

When able bodied people consider the prospect of eating out they think of what kind of food do I fancy? Well so does the wheelie user but quickly followed by, will the tables be high enough for me to sit at the table, will it have legs that mean my foot plates wont fit over, will they have ornate cutlery that wont fit in my hand strap, will I be able to use their drinking cups, will I have enough room so that I do not feel panicked by not being able to make a speedy exit. Most make special provisions for children but seem unable to have a few tables stashed away that conform to height and feet type to make things easier.

Driving about

Pot holes are a nuisance to everyone but to the wheelie user they can be extremely painful, last thing a wheelie in a WAV needs is to be tossed about like a salad in the back. Same can be said for sleeping policemen, ramps etc and to those drivers behind me that get annoyed because I slow right down to navigate these, BOLLOCKS !!!

Booking a Holiday

I used to love planning our holidays I would research on the internet, get some brochures from the travel agent and then go and book it at what usually having done my research a pretty good price.

Now I have to find out can the airline cope with our need to be facing a bulkhead, am I allowed to take his prescription medication into this country, does the hotel have a wet room, zero entry pool, raised beds, how about the transfers, what medical cover can I get, what emergency medical facilities are available, is there any accessible trips we can take. Then because of all the special requirements can we really afford it.

Still here....living the same crap day in day out.

2011-03-28T12:57:00.001+01:00

Have not written anything for a few weeks, as trying to just get on with it. Last week we had to stand down one of carers after a 04:00am argument over what he could and could not do. We like many in our position are having terrible problems finding the right team to look after Hubby. When the agency pays £7.58 per hour why am I surprised, when we get dead-end people in a dead-end job.

The system sucks, to get this provision of care you have to pass an assessment proving ongoing medical nursing need and not just social care need, but you don't get provided with professional people of that level, no you get people who have never done a days caring in their lives, people with lots of personal baggage, no personal discipline or confidence to do a good job. I know this is not everyone's experience, but it is ours.

Hubby is still struggling over the big decision as to whether to submit to the Baclofen pump operation, and I am desperately trying to hang in there giving him the support he needs to make what I think is the only decision without pushing that down his throat.

Meanwhile he is having a horrible time with the pain and spasm, talking regularly about ending it all, the story line in Emmerdale is not helping either. Ever since the x-ray machine at Peterborough City Hospital crushed his left leg his rectus femoris muscle looks like it is ready to pop out of his leg, which of course is extremely painful on top of his already trashed knee.

I since we now have carer cover am actively looking to get back to work as a Project Manager in the engineering fields. But I know as soon as someone sees that you care for someone they run a mile. It is their loss I know , but still hard to take as I do have a pretty sound CV with oodles of experience.

So to give you a picture of what it is like for us at home, lets take yesterday as an example,

Having spent Saturday night up at least once an hour to adjust his legs and try and make him comfortable, 06:00 arrives so his urine catheter has to be done, so I drag my tired bod out of bed yet again, get the stuff, sit him up over the edge of the bed, drain off the urine lift him back into position on the bed, physically , forcibly straighten his legs, bring up his legs again, put the cushion pad in between his knees, stuff pillows on his right side to secure his legs from flopping over, flip his pillow, flick his toes as they constantly cramp. Then I can flop into bed again for a few more minutes before he asks for help again. This is how it is constantly through the night and we can not get the carers to do this so I can get some real uninterrupted sleep, instead like last night they stand watching me doing it all and when we try and get them to do it they mess it up hurting him terribly. Last time I looked I am not superwoman! why am I so...oo special to be able to do what these carers can not? Utter bollocks..

just after 08am we get TDB up but he is in so much pain that he very shortly needs to go back to bed for further stretching etc. No wonder my arms are like a Russian shot putters. We were supposed to get a visit from relatives y'day but had to put them off as I knew I would not be able to cope with his bad mood being in such pain and their need to be entertained. This is how carers/disabled become so isolated. So the day went on bed up, bed up over and over again.

So we are still here living the same crap day in, day out....

Unthinking, Uncaring, IDIOT...

2011-03-02T11:59:00.000Z

I thought I would treat my hubby to a McDonalds breakfast yesterday. Imagine my horror as I turned into the site to find an articulated lorry parked across all of the disabled parking bays. Then of course you get the tough shit park some where else attitude from the driver. The car park was very full so we parked up poor TDB had to stay put and eat his in the car.

I have of course written to the companies involved reminding them why disabled parking spaces are sooooo important to those of us living with people with severe disability and have asked that they do a training session watching the YouTube video entitled Just 2 minutes, http://youtube/watch?v=e9EYh_Tr_Sc

Urrrgh....No One gives a shit....

Local Hospital gets it wrong again

2011-02-11T11:08:00.000Z

Wednesday my husband attended the “Fluorescing” X-Ray dept at our local Peterborough Hospital for a Barium swallow exam of his throat. He is confined to his wheelchair being a C3 spinal cord injury patient. The x-ray machine had to be manoeuvred in an unfamiliar way to the staff on duty. We were assured that the machine had a safety cut out to prevent it coming into contact with Terence.

Whilst the operation was taking place one of the members of staff operated the machinery in such a way as to move the machine onto Terence’s legs, with such force that it momentarily tipped him forward in his chair lifting the back wheels. The staff then rather than using the machine to free Terence straight away tried to extricate him manually, then realising it had to be done via the controls as his legs were wedged under the machine.

The staff checked Terence out for obvious signs of injury there being none we left the hospital. Since the staff said they were going to fill in an incident report we were going to leave this there and chalk it up to yet another bad experience as a disabled person. Unfortunately though I have to report that Terence has had significant pain in his left thigh and knee following on from this incident, although no bruising is evident so we will be making a formal complaint after all. Because of Terence’s spasticity it will be extremely difficult to x-ray this part of Terence leg to check for damage so this has put Terence in an impossible situation.

What do we want from Peterborough City Hospital:

1. A thorough investigation as to why this piece of kit was able to come into contact with Terence.
2. A thorough review of training in the equipment.
3. A review of the operating controls, are they confusing for the staff when the machine is operated in this different way.
4. An apology from the Hospital and an assurance that this will not happen to some other disabled person.

So watch this space and see whether they respond in a positive way.

The Burch Story: Back to the UK

2011-01-31T08:20:00.000Z

It is now May 2009. Gradually his involuntary spasms and pain became worse until we had to make the decision to return home. I knew I needed time to organise life back in the UK and booked Terence into a private rehab hospital. Therefore, I packed up our life in Sydney and the flat over looking the river that I loved, booked the plane tickets and made all the arrangements we needed to move countries. Bad luck seems to follow Terence and I, a week before we were due to get on the plane it became evident that the private rehab had decided not to take us on. I therefore started an email campaign with Stoke Mandeville for help in our case. We arrived back in the UK in May 2009 and had to find suitable hotel accommodation.

The UK is supposed to be a first world country, right? With access to services laws that protect the disabled. We had decided to settle back in Peterborough as it would be convenient for work for me in most probably London and has good access to Yorkshire and Birmingham. Also, some of our relatives would also only be an hour away in Lincolnshire. You try to find a hotel in Peterborough that has a wet room and is really wheelchair friendly. We eventually found one, well done Premier Inn, Lincoln Road. One hotel had a disabled room with a shower over a bath, with steps in the bathroom; one offered us use of the public changing rooms in their leisure centre as the only accessible bathroom in the whole hotel. We are not talking of small private hotels either, these are well known UK counterparts of US chain hotels. Disability Access regulations are routinely ignored in the UK and I could not seem to find anyone who seemed to care enough to do anything about it.

As some reading this book will know looking after someone who is severely disabled in ones own home is a challenge, try doing it totally unsupported in a hotel room for three months. We contacted the local services in Peterborough as technically we were homeless for support and help. We soon found that no one gave a jot that I was looking after a vulnerable adult with no home or support. For example, I dragged Terence down to the housing unit at the city council; wheeling him over pavement surfaces that a third, world country would be ashamed. We arrived with Terence in agony at being shaken so violently by the uneven ground, then to be told that the wait would be at least three hours plus the interview to see a local housing officer. I explained that Terence is not allowed to sit that long due to his medical condition. We got no quarter given, just a direct phone number and email address given, from which we got no response. So again, we had to take matters into our own hands, we found a privately rented bungalow that was not suitable but would give us an address from which to access services. Now we went about getting ourselves a local doctor, district nurse and social worker.

Our first local doctor although being very sympathetic was not the most proactive or forceful at getting us the specialist services that we needed. He seemed to be at a loss when it came to talking to the specialists at Stoke Mandeville from whom we desperately needed help.

Since a spider had bitten, Terence in May 2008 his condition had slowly deteriorated. Pain and spasticity being the biggest problem. He had slowly lost the use of his left arm and hand, his left leg hanging now like it was broken, his right so stiff that I had problems bending it for relief and exercise. No one had explained to us in any of the hospitals that Terence attended that after the initial six months to a year his body would come out of spinal shock and would start to develop debilitating spasms, which now we know is the vein of people recovering from incomplete tetraplegia.

September 2009 the district nurses visited us in our temporary residence and carried out a continuing care assessment. We had to prove that Terence needed on going nursing based care and not what they call social care. We passed this. This meant that a care agency would provide up to 24 hour care without a cost to ourselves, allowing me theoretically to return to work. Eventually in October the appointed company started. It soon became apparent that they were not suitable for Terence’s needs. They had very little experience in spinal injuries and the associated medical complications. They were also unable to deal with the manual handling involved in taking care of Terence. There are quite a lot of movements for example re positioning in his chair that can not be continually carried out using a hoist. Terence’s spasms would slowly move him out of position and eventually would have thrown him on the floor. His feet need constant realigning on his footplates for the same reason. So after a meeting with the PCT manager in charge it was decided to stand them down.

In October 2009 we were re-housed at St Edmunds Court, so at last I had some where suitable to shower Terence.

The Burch Story: New Land New Hope

2011-01-30T09:24:00.000Z

It is now January 2008, seven months after Terence’s injury, I have only managed to work part time for my new Australian employers and they finally pull the plug. We decide to go to Australia for a holiday, retrieve our belongings and give me chance to sort out my bank account plus monies owing.

Do not let anyone tell you that the airlines look after you and provide assistance when flying. We learnt the hard way they do not have a clue. We made the mistake of thinking shelling out money for a first class seat would guarantee treatment like royalty.

First mistake, many first class seats are pods with foot stools. So how is anyone supposed to use a sliding board to transfer from wheelchair to seat? Second, you need to stand up to change the seat to a bed. It was a disaster and Terence got hurt during the man handling. Then to add insult to injury, on arrival, the chauffeur service sent a bus that Terence could not access.

Once we got over the journey we had a fairly good time, I got my business concluded which gave us money to live on. At first we set ourselves up in a hotel in Chatswood NSW that I had previously stayed in. The room had a small kitchenette, roll in shower room, living room and one bedroom. It also had a little balcony that we used to sit on and watch the spectacular rain storms from. Later I managed to sort a new work visa and secured some more work by opening my own Management Consultancy Agency.

The good times were not to last, whilst up in the central New South Wales coast at Port Stephens, Terence was bitten by a spider. The bite quickly became infected and turned into every spinally injured patient’s nightmare a pressure sore. Things deteriorated from there.

Gradually his involuntary spasms and pain became worse until we had to make the decision to return home. I knew I needed time to organise life back in the UK and booked Terence into a private rehab hospital. Therefore, I packed up our life in Sydney and the flat over looking the river that I loved, booked the plane tickets and made all the arrangements we needed to move countries. Bad luck seems to follow Terence and I, a week before we were due to get on the plane it became evident that the private rehab had decided not to take us on. I therefore started an email campaign with Stoke Mandeville for help in our case. We arrived back in the UK in May 2009 and had to find suitable hotel accommodation.

The Burch Story ; Airlift back to UK

2011-01-29T09:30:00.000Z

So your husband is in hospital fighting for his life, what next? Well I found myself dealing with things one at a time in kind of an automatic mechanical way. I made lists of things I had to do which gave me focus and meant that even in my emotionally wrecked moments I could cope. There was a lot to deal with, telling Terence’s family, friends, sorting out the medical insurance, sorting out packing up of our possessions, paying up utility companies and of course, there was work, where I was still expected to turn up every day.

If you are lucky, you will have a personnel department that makes some sort of pretence that they care. I did not, no moral support, not even kind words; luckily, the client I was seconded to, was more understanding and let me leave my desk at regular intervals as appropriate to deal with everything.

At this time, I was living at the Hilton Corniche and would like to record my thanks to the management and staff for their support and kindness to both Terence and I at this horrendous time. They even sent a huge bunch of flowers to Terence. After a month in the Al Noor Hospital, the local doctors decided that they could do nothing else to help Terence, he was then air lifted back to the UK.

The airlift procedure was an interesting experience, our gratitude to Emirates airlines that do this very well. We travelled from Abu Dhabi to Dubai in an ambulance, accompanied by two International SOS Nurses. Terence plus the two nurses checked in kerbside, the ambulance then travelling through the back of the airport direct to the waiting plane, our luggage and me going through the normal check in procedure. I boarded the plane early so that I could ensure Terence was comfortable and settled. The back end of the economy section was altered so that a stretcher bay was erected on top of six folded over seats. It was a very clever arrangement that made the journey bearable for him. They even had a privacy curtain for him, which was handy as he was the centre of attention for some fellow travellers. This nosiness, stare at you, in-your-face trait some of those from the Indo-Asia and the Middle Eastern regions was one that we had found to be a less endearing quality that we had previously commented on during our time living in the UAE. We arrived in Manchester seven hours later, where an ambulance transported us to a local hospital in Lincolnshire for further evaluation.

July 26th 2007, Terence returned to the UK still extremely sick. The local hospital openly admitted that they could not cope with Terence. Eventually he ended up in a specialist NHS Spinal Unit, which I will save their blushes and not directly name, as they were overall, absolutely, appalling.

One of the main problems I have found with UK hospitals is that they forget that the patient has a significant other or relative that still has to maintain a meaningful relationship with that person. I was bombarded, with a bewildering array of rules and regulations, where compassion and empathy would have been more appropriate. Terence was terrified and wanted me to be with him when he wanted me, but the rules and regulations, no she can not stay with you, no she can not visit you in the morning, no she can not help you with your personal needs. No, you can not close your curtain for privacy. They were masters of telling you what you were not allowed to do, but hopeless at informing how you were supposed to transform into a carer of a Tetraplegic.

Terence told me later of the fear that not being able to move invoked and having his call buzzer taken off him because he pressed it once too often on nights. Of not being dressed in time for his one and only chance of getting physio that day. Nurses writing down that medication been administered, when in fact it had not. So when I did visit I was met with this angry person who is not only coming to terms with the fact his body does not work as it should any more, but is up in arms with me for leaving him with this uncaring lot of folks who are supposed to make him feel better. You know it is your entire fault, or so it leaves you feeling.

Terence spent a few days on the spinal unit being reassessed, meeting various members of the team, surgeons, nutritionists, pharmacists, doctors, physiotherapists and nurses. The Neurosurgeons decided that Terence needed a Cervical Corpectomy and reconstruction of his neck bones.

This procedure involved two operations, one going in from the back of the neck, placing titanium rods and bolts across the vertebrae that had become unstable. This left Terence with two lumps (the bolts) that can be felt at the back of his head, even today. The second operation involved making an incision along his jaw line, cleaning out the puss from an abscess, then creating a cage structure into which bone grafted from Terence’s hip was placed to fixate his bones at the front of his neck. After these operations Terence was at deaths door. The team were unable to release him from his breathing tubes following intubation during the operation because his already weakened lung muscles had stopped functioning independently.

Every day I visited and sat with Terence, talked to him whilst he was semi conscious, tubes, drips and machines helping him with his every breath, monitoring every pulse, beat and brain activity. Days went by, then weeks, every day the same routine I would drive from a near by hotel and spend all day with him. I spent so much time in that room that by the time of his discharge from the Intensive Care Unit, I was fully conversant with, drips, cannulae, ventilators and indwelling catheters.

I have some very peculiar occurrences to report from our four month NHS hospital stay, some so incredible I will have to leave you to believe me or not as they did happen. The first happened in Intensive care following Terence’s operation to reconstruct his crumbling vertebrae. A nurse of Caribbean origin, looking after him on nights, entered his room, “Terence, Terence, I want to do the black mans magic on you” , a terrified paralysed Terence, could do nothing as this nurse quietly chanted his voodoo and waved around the articles of his belief. The next day Terence told me what had happened; no one believed him and blamed the medication he was on for delusion. Something terrified him that night; arrangements were made to make sure this particular nurse was kept well away from him for the rest of his stay. Another instance was not so bizarre but serious nether-the-less. Terence had a medication pump fitted following an operation to remove his right cancerous kidney. Yes, poor Terence was also diagnosed with Kidney cancer while all this was going on. During the early morning, the pipe became dislodged from the pump unit, denying him the pain medication he needed and leaked liquid all over his sheets. We asked the nurses to fix the problem, but they stated, only the anaesthetist was able to see to this particular piece of kit. Three hours we waited for the continually paged individual to turn up. When he eventually appeared on the ward, he swaned around making his usual routine visits before presenting himself at Terence’s bed. By this time, I was about ready to swing for the guy as you can imagine. It is one of our regrets that we did sue this hospital for damages as later this would return to haunt us. I did though write a letter giving some feedback which was as usual swept under the carpet, as only the NHS knows how.

Terence spent nearly four months in this hospital, I moved from hotel to hotel like some homeless hobo, everyday being at his side except for one short business trip to Sydney, Australia to spend 2 weeks with my new company. This was rather a painful experience as it gave me a glimpse of what our life should have been like. Anyway I was soon back at Terence’s side. I would arrive at the hospital at about 09:00am every morning, walk to the other part of the main hospital building to obtain a newspaper, then back to sit in the café in the spinal unit waiting for the coffee to be available from the 10am opening time. I saw the same faces most days, many other relatives having to do what I was doing hanging around until the 11am witching hour when we would be allowed up to see our nearest and dearest. We sat swapping horror stories of how bad the staff were treating our seriously ill kin folk. Everyone had similar complaints. Patients becoming very thin not just through the injury but also because they could not get enough good food to eat. Patients in this longer stay unit were fed the same slop as patients in the rest of general hospital who would on average have a 2 week stay. Food was regularly missing, small portions, over cooked, cold, and generally unappetising. No wonder by the time we got Terence stable enough to leave he looked like an advert for the Belsen Jews. Patients on one of the wards were treated very harshly and constantly told to do for themselves as they were on a rehab ward not an acute ward. This meant that there were many stories in the café of loved ones wetting themselves or falling out of their chairs with no help to sort themselves out. One father got accused of being a paedophile just because he was there every day for his daughter and helped her carry out her urine catheter regime. It was also a well known fact that a married staff nurse on this rehab ward made frequent trips on nights to the ward that Terence was in to liaise with his pregnant nurse girlfriend. Unprofessionalism pervaded all aspects of this unit.

Our main complaint about this specialist unit was the lack of physiotherapy provided when we understood that was the main treatment that Terence should be getting to rehabilitate back into society again. We honestly believe that this unit denied Terence the chance of being able to stand and maybe shuffle a bit, we are realistic to know he probably would not have been able to walk fully again. Terence was lucky if he got 30 minutes of physio a week. The unit was badly managed and I personally put this down to it being run by a clinician rather than a professional administrator. He was a good surgeon / doctor but a lousy manager. I say this as I noted whilst there that the therapists at this fairly well equipped unit were not maximising the use of the equipment available. Therapy sessions were only run from 10:30 – 12:00 (1 ½ hours) then 13:30-16:00 (2 ½ hours) total of 4 hours a day per therapist, leaving equipment idol the rest of the time. They needed to stagger their lunch hours and starting times to maximise the use of the equipment and see more patients a day. It was very sad walking around this unit seeing people sitting idol in their wheelchairs with nothing to do all day when they could be formally and informally be contributing to their rehabilitation. There were many underutilised rooms where patients could have been playing games or such like to help with hand function, instead one such room had become an informal staff room for the cleaners. There was also a distinct lack of training facilities and information for long term carers. No where private to meet with lawyers etc. although there was the space. The most serious problem was the lack of team work between the nursing and therapy staff. There were also problems with hygiene on the ward as there were not enough sinks and outbreaks of C-diff and other bugs were a constant worry. Nursing staff tended to be hard faced and brutal. Terence told me of his terror at being turned every four hours in bed regardless of his need to sleep and the very unkind way they had of performing this procedure. There was also a culture of bribery not money or anything of a large value, no their currency was chocolate and sweets. Overall I am surprised that people as seriously ill as those on this ward did not die, instead it is likely that they failed to reach their full rehabilitation potential placing even more of a burden on the long run on the community medical services that later we would find out were next to useless.

It is now October 2007, and even through all of NHS’ faults somehow Terence survived all of his operations, and the poking and prodding. We were then lucky, as we had maintained our private medical cover, so with this and 35K of our own money I was able to get him transferred to a rehabilitation unit in London. Where an intensive physio program got him strong enough to push his own chair and gave him back some dignity and self-respect.

The road to becoming a carer - The Burch Story

2011-01-28T11:44:00.000Z

In 2004, I had the fantastic opportunity of being part of something bigger than myself. I joined the mainly American based teams rebuilding Iraq using engineering projects. I spent two wonderful years in the country of Iraq, and hope I left the place a little better than when I arrived. In addition, I finally after a courtship of 16 years married my husband, Terence.

2006, I briefly returned home to the UK and my very patient waiting husband. We then left the UK together so that I could pursue project management work in the UAE. We had about a year living together full time enjoying our marriage when the unthinkable happened. He got sick.

By June 2007 we were actively pursuing a move to Australia, a move to my next assignment and hopefully a new life. Terence woke up on that fateful morning with a fever and stiff neck saying he felt unwell. Being the caring wife, I thought he had ‘man flu’ threw the bottle of Paracetamol at him, as I left for work. A few days went by and he did not seem to be getting better, so I rang our local doctor with the symptoms. Get him into hospital she said he may have bacterial meningitis. He managed to walk unsteadily the few hundred yards to the Al Noor Hospital. Over the weekend he had become dehydrated, unsteady on his feet and his face around his left eye looked numb in that it did not seem to move normally with the expressions on his face. They admitted him for further tests.

Al Noor Hospital is a modern city centre hospital in Abu Dhabi. Most patients have a clean single on-suite room with all the equipment usually found in a modern general hospital. I had no compulsion about admitting Terence there as a few months previously they had admitted me and dealt with my acute appendicitis. Carrying out such a good job that I went back to work, sore but otherwise okay, only two days following the key hole surgery. Unfortunately for Terence, he over the next few days after admission, deteriorated. During the night on about his third night in hospital Terence tells me that he got up to go to the bathroom, dragging his drip pole with him, on the way back he slid down the pole to the floor virtually unable to move. He laid there for what seemed like hours finally managing to drag his non- functioning broken body back towards his bed and the buzzer to call for help. From that point on he had became paralysed from the neck down. Apparently some how he had contracted a Staph infection in his neck, crumbling his vertebrae and depressing his spinal cord.

Terence spent his first days in hospital having scans, x-rays and blood tests. These tests came back positive for Staphylococcus Aureus and right kidney cancer. The hospital neurologist also thought Terence had some age degeneration ( Spinal Stenosis ) of the spine so advocated a spinal operation called a Laminectomy to relieve the pressure on his spinal cord. This was the first of many operations Terence was to undergo. I had the daunting task of signing a waver, as they did not have a ventilator available should the operation have complications and Terence suffer breathing difficulties. The first of many decisions that had to be made, that Terence was not able to fully comprehend the full consequences of, and would later in his down moments blame me for going along with. After Terence’s operation he was still severely paralysed, could not move his arms as well as his legs. He also over the ensuing weeks developed mild pneumonia and had problems breathing as his diaphragm muscles had become affected, but not so bad that he had to be ventilated at that stage.

The staff, at Al Noor hospital were very kind and although they did not have the equipment they really needed such as hoists and bathing shower trays etc, did their very best for Terence. We remember one nurse with particular fondness, Sir Percy we called him, a gay Pilipino, who had streaks of gold running through him. He even worked a double shift with Terence on his last night at the hospital, making sure everything was just so for his new friend. Sometimes though during our stay equipment shortages did cause some anxious moments, on one occasion when transferring him from bed to wheelchair towards the end of his stay, the staff manhandled him so badly that they nearly dropped him on the floor badly wrenching his already weak left shoulder. Physiotherapy was also a strange experience with two very slightly built Indian ladies floating in to his room once a day to very gently stretch his legs and arms. Terence still looks back on the little he can remember of his initial illness and now sincerely wishes that he had died at that stage.

This phase of any illness is extremely stressful for the person going through the illness and for the surrounding family, friends and carers. The medical profession take care of the patient, but what about you, the carer?

Stanmore Hospital Stay the Final Part for now

2011-01-23T08:49:00.000Z

Wednesday 12th we got up early to make sure TDB had something in his stomach before what the consultant had told us was her main day with us. We proceeded to the spinal unit and put TDB onto the allocated bed. The consultant and intern arrived shortly afterwards to explain the procedure for the Baclofen test dose, which was to be carried by means of a lumber punch type injection. TDB was then turned onto his bad left side, so was no comfortable from the oft. Well firstly the intern had a go at finding the sweet spot between the vertebrae, poking the very long needle into his lower back, then the consultant had a go, TDB endured this for nearly an hour with short pauses for him to get the feeling back in his arm. TDB was sceptical about this procedure in the first place so I am there hoping against hope that they sort it soon or I know he will abort the whole thing. Eventually they decide the only way is to do the insertion with the help of x-rays. So off we all go down the cold corridors to the x-ray room. Pat slide TDB across onto the bed, try and hold him on his side but curled up as much as possible to open up the spaces between his vertebrae. Every time the machine moved it knocks his knees painfully, but this did enable the consultant to finally give TDB his test dose of Baclofen.

So poor old TDB was then returned to the ward rather bruised and battered to await for the medicine to take effect. It took about an hour to start working he said everything felt numb and he could no longer move his toes. The injection took so long to perform we missed yet another physio and OT session although both did come to see us. TDB stayed in bed at first so that blood pressure etc could be monitored. Which fell very low indeed, 68/38 at one point the nurses felt a bit concerned over and wonder whether he would be able to go for his scheduled x-rays. TDB said he was going no where anyways until he had eaten and so he did. The injection began to work as for the first time in two years he was able to lie in bed with his legs straight and cover them under some regulation hospital blankets. Mid afternoon he was able to be wheeled to his x-ray and for a change I did not need to be present to make sure his legs stayed where they wanted them. He had some x-rays taken of his neck, ankles and left knee. Both the rehab consultant and orthopaedic surgeon were interested in seeing the results. He was supposed to have a bone density scan but this got pushed out because of the time.

Afterwards TDB wanted to get up in his wheelchair, I was able to easily straighten his legs and noticed that the right one especially flopped over to one side making it rather awkward for me to put his socks and shoes back on. Very strange for me having this totally flaccid body now in front of me not fighting my every effort to get him dressed. TDB did look a lot straighter in his chair and even propelled it himself without falling over to his left this time. So to the onlooker the injection looked to be a success, we had found something that works. TDB was less convinced after the days events, not impressed with how long the lumber punch took, missing his bone density scan and the feeling of the two pieces of rubber he was sitting on that used to be his legs. Wednesday we were both exhausted and had one of best nights sleep for a very long time. It is a shame it was that night that I carried out the smaller sleep study, which was supposed to investigate whether I was experiencing problems because of my broken sleep.

Thursday 13th, we had a discharge planning meeting with all of the team present, when over what the goals of the week were, achievements and future work to be done. I thanked the team for the extra help they have given us due to previous bad NHS experiences. Soon afterwards TDB’s orthopaedic surgeon came to visit and made it clear that yes TDB did in normal circumstances need a total knee replacement but he wants to wait and see whether he agrees to have the pump fitted and then starts to carry out standing regimes on his legs. At which time he feels it would be more appropriate to reconsider operating. The physio then came to talk to us for a while. After which we went to get some food, have a final session with the OT, hand over the keys of the GHU, catch our taxi back to KGX. Train to Peterborough and another taxi to home at St Edmunds Court.

Now back home TDB is being given some space to think about where he goes from here, to Baclofen pump or not that is the question my dear readers….

Stanmore Hospital Stay Part 3- serious medical stuff

2011-01-21T08:31:00.000Z

Friday 7th January the physio met us at the Graham Hill Unit to update and assess exactly what is TDB’s level of injury. This is done with a series of touch and motor function tests. Everyone we have met so far has concluded that without TDB’s limiting spasticity / spasms he could be quite a bit more independent and have a quality of life that thus far has eluded him. After physio we went up onto the spinal unit ward so that TDB could be provided with lunch. Food at the hospital is still hospital food but is oodles better than we experienced at Sheffield three years earlier. They have availed themselves of a food service akin to Wiltshire Foods delivery where frozen ready meals are re-enlivened up in the microwave. This gives the patient some considerable choice on a par with a pub menu. In the afternoon we met up with the OT and trialled TDB’s new body brace. Whoops not a good session the brace was sticking into him in all the wrong places he shouting out in pain by the time he had been rolled into it, strapped tightly etc. The brace was sent way for some alterations to stop TDB’s manhood being squashed. This brace by the way looks like a piece of custom prop body armour from a roman epic except it is doll coloured salmon pink skin and plastic looking. It comes in two parts a breast plate and back plate joined together with white tapes that secure the person inside as tight as they can bear. When off TDB it really shows how twisted his back really is and looks like it belongs to a very strangely shaped individual indeed. I keep telling TDB it is a blank canvass that is crying out for a custom paint job but for some reason he is not impressed.

We have the weekend free of seeing medical people so split our time between meals in the ward, using the Aspire Café and resting up in the unit. We were going to try and get out to a local shopping centre but TDB did not feel up to it and Saturday was “Bowel Day”.

Monday 10th we awoke thinking we were to attend TDB’s MRI scan later that morning but this was cancelled. TDB was having some bladder problems so we asked to speak with his consultant which meant that we missed yet another physio session and our chance to get TDB on a tilt table. Later that afternoon we met up with the OT again had a more successful session with the body brace and had a left hand splint made up for TDB.

Tuesday 11th in the morning another session with the OT and straight after a physio session where TDB tried out a different type of sling for hoist lifting. He found he could just about tolerate this different design although he did say it squeezed some parts that men don’t like to be, but hey more progress made there. Early afternoon we retired to the G.H. Unit to carry out yet another “bowel day and shower” before preparing for TDB’s rescheduled MRI scan. We thought they we were going to give TDB general anaesthetic to make him flaccid for this as his twisted body does not fit well under this machine that requires the patient to lie as still as possible. So we were a bit surprised when they suggested they were going give TDB a series of Diazepam (Vallium) injections. A bit alarmed actually as TDB has had some rather nasty after affects to previously orally administered Benodiazepams. Anyways they convinced us this would act differently as it was straight into the blood stream. In some ways they were right, but it did mean that in the end he had to be administered 20mg in 5mg increments for it to work a little. TDB tells me the manual handling of his body under the scan was not appreciated and his head became jammed at one point because of his spine curvature and at one point the machine seemed to kick back by having an operational failure. Eventually they got it done enough for the consultant to see what she wanted. It is horrible seeing a loved one under the influence of these type drugs and having been there before with my mother I did not really enjoy reliving the experience. What do I mean? seeing someone slurring their speech, their eyes glazed with vacant look , they are there, but not wholly so. Like being out for a drink with people getting drunk, when you are not drinking alcohol is the nearest everyday occurrence I can relate it too. TDB was totally exhausted after this but insisted on retiring much to chagrin of the ward nurses back to his home from home on the GHU, for me to monitor him during the night for any of the bad side effects. That night TDB also carried out a sleep study looking for signs of sleep apnoea. This is carried out by having two belts across the chest and a carbon dioxide meter attached to ones nose, all of which feeds information back to a small computer unit. The input then downloaded and analysed. TDB actually for a change probably only got me up twice during the night to help with his legs where usually it is an hourly ritual.

Stanmore Hospital Visit Part3 - GHU

2011-01-15T10:43:00.001Z

The Graham Hill Unit is looking a bit sadly worse for wear, it could do with a lick of paint on the outside no doubt being neglected because of the planned demolition for the new hospital. Bit surprised that there was not an associated disabled parking bay outside, but suppose most visitors come from the acute/rehab part of the hospital and do not have their adapted cars at this point in their stay. This adapted home does not purport to display the latest technology available in door opening for the disabled either as it opens with an inaccessible standard Yale door lock. The door opens on to a hallway with laminated floor, off which to the left is first a large open kitchen, 2nd the square shaped living room, first on the right the fully accessible bathroom suite, then a spare bedroom, and straight down the end of the hallway the main bedroom. Through out there are light switches at the right height for the wheelchair user, but still convenient for two legged carer. I did notice though that because of the electrical fittings laws, I think, all of the sockets were at the usual heights just above skirting board level and therefore inaccessible to a proportion of wheelchair users without trunk strength. If you are that disabled I guess the assumption is that you would have help. The Kitchen had counter tops where a wheelchair could fit under, the built in oven at an appropriate height etc. Kitchen design it seems to me has to be an individual design dependant on how much the disabled person cooks as opposed to the associated carer / family. The bathroom had a walk in shower, bath with automated seat, raised toilet etc. The wash basin I did not think worked well as the levers to make turning on the taps easier got in the way once the basin was filled. The levers should have been reversed so that off was horizontal with the back of the basin leaving room to wash in the sink as required, instead they could poke someone’s eye out when using the sink. The living room displayed the problems of buying furniture as two items had blocks fitted to make accessible, one of which the dining room table. Accessible tables the vein of my life, you want to eat out at a restaurant, and end up choosing on the basis of the table design rather than the quality or type of food. I refer to table feet design to allow a wheelchair user to stay in chair whilst eating allowing foot rests to glide over the top of rather than bang into. We were also disappointed that the TV only had the 5 terrestrial channels, If I had the spare money I would have bought them a £20 set top box. The bedroom had a gantry hoist over a hospital bed and an attendant put-me-up bed for me to sleep in. So much like our set up at home. Reassuring that we have not done something very peculiar at home. This was to be our accommodation for the next five nights.

Stanmore Hospital Stay Part 2

2011-01-10T19:39:00.000Z

This small room with the luxury of a small flat screen TV and a recliner chair for me to snooze in. For most of our first night we both froze and I tossed and turned in the very uncomfortable recliner in between looking after TDB’s legs. Eventually it got too much for him and we finally broke down and asked for additional heating. The staff surprised us yet again and duly produced a portable heater for us and not the it’s not allowed Health & Safety rigmarole that such a request usually elicits.

07:00am the next morning a nurse popped her head around the door and told us we were expected in the “plaster” unit between 07:30 and 08:00. So with no breakfast and not even a hot drink we traipse down one of the drafty sloped external corridors to the unit to be moulded for a brace that will hopefully help to correct TDB’s horrendous posture. A discussion ensued as to how they were going to get TDB as straight as possible to get the best result. So in the end because of his terrible leg spasms we opted for balancing over the edge of the plinth with me securing his legs whilst three others wrapped him in some sort of cloth soaked resin. This sets a bit like plaster of Paris which then he was cut free from. From this the Orthotics department make a body brace. By the time we returned to our room we were late for our scheduled Physio so opted for a cup of tea and some late breakfast. Well officially for TDB only as they do not feed any associated carers even if working 24/7. The Physio then turned up we at least met her and had an initial chat about what the plans were.

Wednesday afternoon we had another session with the OT where we talked about posture and TDB’s hand function. She also told us that we would be moving into an adapted flat on site for the rest of our stay so that I could continue to look after TDB. In the evening after dinner we got on with the 3-day interval chore of manually evacuating TDB’s bowels. Something must have gone wrong during the process, well we think so as we had to call out the on call doc as TDB had some bladder problems which were very painful.

In the morning while TDB ate his breakfast we first noticed the birds outside, an amazing collection of Blue Tits, Long Tailed Tits, a Robin, and other once common English birds all outside our window enjoying the bird feeders that someone had provided. I have never seen so many wild birds in one place.

Thursday we attended a physio and another OT session and had the afternoon to ourselves to move into the Graham Hill Unit our home from home for the next few days. To get to the unit you head from the spinal unit ward down a very long corridor, past the rehab gym, along the gallery of the Aspire sports hall, down the lift out of the Aspire building entrance, then walk past the outside of the very impressive zero entry Aspire provided heated pool. Then you are faced with a very unfriendly narrow sloping unlit zigzag pathway down to the unit. Not a very accessible pathway to the disability adapted show flat that is the Graham Hill Unit. Hope it doesn’t snow!

So far so good - Stanmore SCIU seems to be a good place to be.

2011-01-09T10:56:00.000Z

Why do we bother planning stuff when every company out there seems to conspire to let you down? Tuesday 4th January we arose early to get TDB ready for our trip to Stanmore Hospital, I had done most of the packing the night before, but still had to deflate and pack our Roho mattress. The Taxi was booked for 07:55 and of course no sign of it at the appointed hour even though it was pre-booked. I will not name the company as it would give them publicity that they do not deserve. They eventually arrive at the time of our trains departure time, so stress levels were at max when we eventually arrived at the train station.

The East Coast train staff were wonderful sorted us out another train and changed our care workers ticket with a minimum of fuss. Whilst I telephoned Addison Lee our Taxi company at the Kings Cross leg of the journey to rearrange that journey for an hour later. Our grateful thanks to them for accommodating this late change without an extra fee. We boarded the 125 diesel train and for a moment thought his wheelchair would not fit through the vestibule doors, it was a very tight squeeze but we managed in the end.

The journey for Terence in the Taxi on top of getting cold was of course very painful, London roads being full of pot holes especially after the recent spell of cold weather. Poor Taxi driver got the sharp end of TDB’s tongue as when loading up he caught his very painful feet. All was well by the time we arrived at the Spinal Unit.
After announcing our arrival, first job as it was noon was to make sure TDB had his urine catheter sorted, last thing we needed was an emergency Autonomic Dysreflexia attack so soon after arrival. It being lunch time on the unit we were made to wait a short while before being fetched by one of the senior nurses. One thing we noticed straight away was how friendly everyone is. We were lead to our cubicle spot by one of the rust coloured polo shirted ward carers. A grade of staff that carry out many of the functions care workers do in the community, changing sheets, toileting, feeding, clothing and generally helping the disabled in daily life type activities. Fantastic idea who ever thought that one up, leaving the nurses to concentrate on nursing duties. He helped me unpack our Roho mattress and get it on TDB’s allocated bed. TDB looked around this four bed bay and asked where I was going to sleep since I needed to be there for him to straighten his legs during the night. A meeting had been arranged with the senior nurse and OT so I knew we would be able to explain the situation there.

The Royal National Orthopaedic Hospital at Stanmore is currently having a new building built and I am sure that the staff would say not before time. Currently the hospital is a collection of refabs, port-a-cabins and traditional buildings linked together with drafty external corridors with slopes that are extremely unfriendly to the wheelchair user. I have seen better accommodation in the third world countries that I have worked in. The bay we were in had one sink which was out of use due to being repaired by workmen using hardboard and smelly Evostick. How staff manage to maintain cleanliness in such circumstances I do not know. Every where looked like it needed a deep clean due to wear and tear more than lack of care and attention by the staff. With things like the plumbing, utilities not working at optimum levels the staff seem to have developed a Dunkirk type spirit which I hope with the move to the new building is not lost as it was very a refreshing atmosphere to walk into as a visitor and very unusual for a NHS institution.

During our meeting we explained the situation we had got ourselves into whilst trying manage TDB’s condition without the support we needed. The fact that TDB needs help forcibly straightening his legs on an hourly basis during the night due to spasms and that we had not found a way to secure his legs so that he could lie on his side. The OT worked with us on the provided bed so that we could demonstrate the problem and eventually agreed that nursing staff would not be able to carry this out this procedure in a safe manner and that I would at first be needed to help. I let them know that we both know this can not carry on like this and was the main reason for our pleas for help. They got their heads together and came up with a room on another associated unit for the first two nights, where I could attend to TDB without disturbing others during the night.

This small room with the luxury of a small flat screen TV and a recliner chair for me to snooze in.

New Year Same old Let downs

2011-01-03T08:49:00.002Z

As I previously posted we spent much of the festive season commuting too and fro the local hospital, 3 times a day 25-29th , then once a day 30&31st. So on the first both of us spent most of the day dosing to catch up on lost sleep and through sheer exhaustion. We had planned to cook our xmas bird on the wed after but #1 son got ill so he didn't come to visit so we ate a bit on our own and I have made the rest into a years supply of curry and frozen it.

Spent most of the weekend mentally preparing for our epic trip down to Stanmore Hospital where TDB will be an inpatient 4-13th. Arranged assistance at the rail station taxis both ends etc. We can not use the ambulances as there is a ban on TDB's wheelchair type and he can not lie on a stretcher because of his spasticity.

So you can imagine the anger in our household yesterday to have a phone call at 9.40pm to say that despite several weeks warning our care company has decided that they can not fund the train ticket for an accompanying carer.It is a holiday here today so how am I going to contact anyone to solve this.

Better news they have relented and have paid for the carers train ticket. Whew as how was I going to manage a large holdall with Roho mattress enclosed plus the few bits of clothing and medication needed on my own and push a wheelchair to boot.

Oh Jees I forgot everyone thinks I AM SUPERWOMAN !!!

Christmas - Same old Shit different day.

2010-12-26T12:26:00.000Z

We didn't get Christmas this year, yes there was the 25th December but no Christmas dinner for us, no lazy day stretched out in front of a cozy fire, drink in one hand remote in the other.

Lets back up two days to Thursday. The GP called to say that TDB had yet another UTI a nasty little bug this time called Klebsiella and the only treatment hospital strength anti-biotic. She very kindly scratched her head to find us a solution where he could get treatment at home rather than in hospital. The district nurses would come and give him an injection in his rear in association with Lidocaine for the next five days. Okay we said we are up for that. So on Thursday they came and gave said injection. We had a terrible time during the night if our nights are not bad enough already TDB's legs were so stiff I was having extreme difficulties dealing with his spasms which I normally sort by straightening his legs to relieve. So in the morning we rang the doc and because he was screaming out in pain she sent an ambulance. Bit of a waste of time as we can not travel in an emergency ambulance. After much arm twisting we head to A&E in our own car.

The joys of our new hospital in Peterborough, unusually I got a parking space in the extremely dangerous for wheelchair users disabled car park, everyone must have decided xmas eve was not the day to be sat in a hospital. Well we sat in various parts of A&E for over 6 hours until they decided that our GP was right and TDB needed to be admitted so that he could get IV antibiotics.

The found us a single occupancy room, barrier nursing had to be enforced, in the Cardiac unit. What a nightmare for me trying to get him settled in unfamiliar surroundings and on top of that it was bowel day so I had to persuade the staff that as it was now 7pm it was urgent that I get him seen to, before anything else that they might deem to be important. I am a bit of a pain in the neck for staff I know but I have to be forceful or else TDB suffers from their ignorance of his SCI condition. Got TDB settled in bed after doing the business then we realised that he could not maintain his body temperature having got really cold earlier in A&E, the room was way too cold for him to safely recover, especially in the nude as he sleeps with minimum covers because of his spasms. So up we get him again in his wheelchair wrap him up in his blankets, get the nurse to give him his antibiotics and start negotiations as to our best course of action.

No additional heating was available, so we told them for TDB's general well being he would need to go home where it is warm. So a plan was hatched, we were to return 3 times a day over the next few days to get his IV and then return home where I can better manage all his other medical problems. So on xmas day we returned to the hospital just after 8am, then again at 2pm and 8pm.

CHRISTMAS WAS CANCELLED FOR US.

Boxing Day same routine again....

Some better news for a change

2010-12-13T17:37:00.000Z

Stanmore have agreed to take a look at TDB 4-13th Jan plus the feb admit as well. Maybe we might get to the bottom of what is really going on with TDB. Will be great for me to be able to share the burden for a few days with staff that should know what they are talking about. I am hoping that I can learn some more from them about TDB's condition so as to understand what is going on with him.

So now we have a date to fix on we just have to keep going for the next two weeks. Hopefully my shoulder + back will keep going with pain killers until then. Must admit I am secretly hoping they will find a way to get him some sleep while he is there, so that I can also.

We have been training one of our new team of carers this week. We think he will do okay at the routine stuff, so far so good. Crisis stuff I am not sure yet. The care agency manager is coming on Thursday to carry out risk assessments on the manual handling, they need to find a way or all bets are off.

We are a bit more hopeful re the future toady which has got to be a good thing.

http://onmybiketoo.com

Oh Dear having to write nasty emails again

2010-12-10T08:42:00.000Z

Dear Social Worker et al :

There is an old management training mantra, ASS U ME, makes an ASS out of U and ME. Re ferticare, NO, not the reason we were talking about it. Some studies have shown that this same treatment at a “lower frequency” reduces spasms in some patients.
Terence has decided to decline this treatment at this time, one of the reasons being, people jumping to wrong conclusions ! Feels his dignity has taken a big enough battering already at this time, without people sniggering behind his back.

Angela Gall [Stanmore] can not think of anything to give TDB to keep us going until February, in the way of an epidural etc. I am trawling the internet for expert Anaesthetists, Pain Experts others , there must be something out there that will numb his below waist sensations for a week or so at a time. The NHS is being very cruel leaving him to suffer like this and I believe his human rights are being trampled on.

Re the night shift: you make it sound like we have made a choice to decline the night shift. What choice ? there is no choice, we are between the proverbial rock and hard place. We need a qualified physiotherapist on nights to do what I do but in a safer manner and to train the carers properly. The physio will have a feel from his vocational experience of how far a damaged human knee can be manipulated. You lot are really pushing me to walk out on my husband, I will have to for my own medical safety. Then I wonder how quickly you lot would realise what we have been trying to tell you is fully justified and true. Please see sense guys, do I really have to manufacture a medical emergency?

Next Thursday Belinda from Commicare is coming to witness what I have to do to straighten his legs every hour during the night. She will feel for herself, hopefully without hurting herself, how difficult it is to straighten TDB’s legs, also how ‘sloppy’ TDB’s damaged left knee feels. You yourself could not part TDB’s knees when you were here so know how clamped up everything gets. I guarantee she will not be able to do the procedure.

So to summarise why are we not starting the night shift at this time:

1. Would be asking inadequately trained Carers to carry out a dangerous procedure [hourly forcible leg straightening] that could cripple them [possible back injury, shoulder injury, sprained wrists, spleen damage] and take away their livelihood.
2. Would be asking inadequately trained Carers to carry out a dangerous procedure that could further deteriorate their clients (TDB) well being, resulting in further damage to his left leg.

Then why am I doing said procedure, straightening TDB’s legs is the only way to stop his painful leg spasms at the moment. Again all to note I am now carrying out this very physical hourly procedure at night with a back, shoulder, knee injury, and no significant sleep in which to recover my health. Not more than 2 hours straight sleep since September 16th. THIS IS AN URGENT CRISIS I WILL WALK AWAY INORDER TO PROTECT MY OWN HEALTH & FUTURE PROSPECTS OF RETURNING TO WORK.

With all due deference to those copied in on this email DO SOMETHING TO CHANGE THIS SITUATION IMMEDIATELY OR BE PREPARED TO FACE THE CONSEQUENCES OF YOUR INACTION.

Angela & Terence

Oh its Wednesday today....every day seems the same...

2010-12-08T08:22:00.000Z

Just finished the on-line food shopping our only way of having food in the house. Wouldn't you have thought that if someone in your house was getting higher rate DLA they would knock off the delivery charge, no such luck.

Going to try and venture out in the car today as TDB has a physio appointment and then to the new Hospital to see his Kidney Doc. Bit worried about it as this morning his spasms are so bad that when I went to straighten his legs he was screaming out in pain as his stomach muscles were firing off painfully. Very scary to hear a grown man scream out in pain, I thought I had finally broken his leg for a second. No one knows what it is like to have to torture your nearest and dearest just so their legs relax for a few more minutes. There is no way these untrained carers can do this. I am having to abort the operation of straightening coming back up for another go on frequent occasions as I can feel that if I continued to press down something would snap. They just wont have this feel...and it is not something you can teach.

HE IS DEFINITELY DETERIORATING BUT NO ONE OUT THERE IS LISTENING TO US.

The GPs have their heads firmly up their arses and at the same time deep in the sand. They just do not want to know how we are doing. I seemed to have been pegged as a drama queen which my friends who I served in Iraq will find hilarious, as they know I am the person you want along side in a crisis.

We need help to find a substance that TDB can take directly into his spine to numb his pain and spasms temporarily to get us through until February when the staff at Stanmore will find out what it is exactly to look after my hubby, then there will be DRAMA...

We need your help, do you know someone ?

www.causes.com/causes/501898-support-campaign-to-get-the-nhs-to-do-its-job
www.onmybiketoo.com for the story of how we got in this mess in the first place.
Thank you Angela

The Doctors why don't they help us ?

2010-12-07T08:36:00.000Z

TDB's consultant rang us last night, I explained about the dire straits we are in. She says she understands but can not do anything for him until February. So I asked her if there was an epidural or something that he could be given weekly until then to get him through, no there is nothing known to medical science that my husband can have to relieve his suffering. I do not believe it there must be something that could temporarily numb his sensations to get us through these next 8 weeks.She did mention some sort of vibration therapy that she said might help lessen the spasms a bit but not the pain from his knee. They have definitely decided that his knee does not need operating on even though it don't sound or feel right. All coming from his spinal injury apparently.

Everyone thinks that just because we have carers in training now that things will be okay. They wont ? Still does not take away his pain, spasms etc just means that I am able to walk away for a hour or too.

Come on those of you in the medical community, thinking caps on, give us back some hope and Christmas which at the moment is cancelled in our household.

Happy Birthday Husband of mine.

2010-12-06T09:21:00.000Z

It is my hubby's birthday today not that it will brighten his day or anything. No you don't get the choice to switch off the pain for the day, Birthday or not. We were going to try and go out for a drive today just to get out of this bloody flat, but he does not feel well enough to deal with the extra pain that would cause. I do not think my back and shoulder are up to the physical lifting involved either so we will stay put today, on our own wallowing in our own misery.

Not much exciting happening this week we have a routine visit to the local hospital on Wednesday to see the kidney specialist which we are both dreading, not the appointment but the parking at the hospital. Thursday we have a planning meeting with our new care agency on how we are to train and ramp up the provision of carers. A bit of light at end of tunnel, except they still will not be able to deal with TDB's leg spasms on nights so muggings here still will not get any sleep to speak of.

Wrote an email to his specialists yesterday begging for help to get us through to his hospital appointment in February I will not hold my breath. Different Day Same Shit....

Sunday ....Bloody Sunday...

2010-12-05T08:20:00.000Z

Well its quiet here on a Sunday, except for the stomps we can hear from out neighbour upstairs. The Snow has nearly all gone.

TDB is definitely getting worse after 3am in the morning he just can not seem to settle, he is regularly shouting out in pain as his legs move from under him and there is nothing I can give him or do for him to help, except move his legs for him and try and make him as comfortable as possible. So not much sleep in our house again last night.

WHY WONT ANYONE DO SOMETHING ABOUT THIS APPALLING SITUATION ?

Surely there is an injection out there to numb his pain until we get to our hospital appointment in February.

Its the weekend again

2010-12-04T09:25:00.000Z

For most in society this is a break from the norm a chance to relax or do something different. Well not in our household and I presume many carer households length and breadth of the country. The morning emerged from the waking night duties much as it does on any other day. I finally got myself upright at about 07:00 made the first of many cups of coffee tried to loosen up my aching joints and limbs so that I could tackle the gymnastics / power lifting it takes to get TDB up and out of bed.

Today is bowel day so poor old TDB has to take various concoctions this morning to loosen up his stools. We will put him back to bed at about 15:00hrs this afternoon, stick a suppository up his arse, wait an hour and then the latex gloves come out ....no I am not going to go into graphical detail but will leave to the reader's imagination, needless to say it does not come out unaided!!

Hence the line in my poem :

I’m not Superwoman, just a Caring Wife.
Just a note to make a wares,
just in case someone cares.

Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.

Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.

Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.

Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.

Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.

Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.

Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just
me.

Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.

Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.

Every time we ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS IT JUST ME?

Visit to the new local hospital at Peterborough

2010-12-03T12:40:00.000Z

I loaded TDB up in our car having positioned the car carefully to make use of a dry patch in our car park, so that I did not land on my arse lifting him out of his chair.We arrived at the new hospital in plenty of time at 15:10 only to find it was chaos, everything is so tight for car access in front of the entrance and the temporary disabled car parking is quite frankly a very bad joke. It sits in a hole so anyone pushing a wheelchair independently must be a Para-Olympian just to get from there to the front door. The car park is extremely tight for space as well so if you have one of those big mobility vehicles you ain't getting in. We don't but still could not find anywhere to park and unload. So I parked up in the drop off zone and went in to reception primarily to cancel our appointment as I could find anywhere close enough and safe enough to do the gymnastics he takes to get TDB out of our car and into his wheelchair.Any ways I got lucky as Toni the manager for disability issues was on the front desk. Very nice lady who showed us somewhere safe but "unauthorised" that we could park, she also took us up to the Neck and Head department and got us seen as a priority. So there are some nice people out there. I must apologise to her here for my hubby's grumpy demeanour, he isn't generally like that honest but by this time he had enough of being cold and unsettled. The appointment went well but looks like we need to go back for further investigations into TDB's swallowing problems.

On the way home we got some fish + Chips for tea, took them home and enjoyed them.

Rest of our evening was spent trying to get TDB's body temperature back up to where it should be , he gets so cold so easily.He was in a lot of pain last night with his feet and left knee.

Put him back to bed at 8pm for a couple of hours and joined him myself as exhausted. We didn't get that much rest as his legs were spasming pretty badly no sooner got him settled lie down and he was asking me to attend to him again. Back up at 10pm to clean his teeth and do his catheter at midnight.

00:30 back to try and lie down again after working on TDB's legs for quarter of an hour to try and settle them. Then up again at 02:00, 03:15, 04:00, 04:20, 05:13, 05:30, then at 05:45 do his catheter a bit early since up any ways. Try and get some more snatches of sleep before getting up at just after 07:00.

10:30 this morning we had a visit by the housing officer and Community OT as we are trying to get rehoused. This place just ain't working for us, but we realise, having been there ourselves that we will not be a high priority. They were not that impressed with TDB's cannibalised wheelchair, where have had to remove one of the front caster as he kept swiping his heel, padding on his right armrest where he hangs on for dear life so that he does not fall out of his chair to his left weak side. They saw for themselves that I am in a lot of pain with my back and could hear the grinding in my sore knees, especially as I had to reposition TDB several times while they were trying to talk to him.

Well here we go into the black hole again of the weekend, where even less people give a toss about about anyone.

New to Blogging will give this a go...

2010-12-02T09:26:00.000Z

Today is Thursday 2nd December much as most days I do stuff on my computer in between looking after my sick hubby. If you want to know about how we got to where we are now keep re visiting http:/www.onmybiketoo.com where a fully account of our story will be published shortly.

My day started at 06:00hrs today by carrying out my hubby's urine catheter as it does most days, when I say it started that sounds like I had a night sleep. We don't sleep in our household we cat nap in between TDB's spasms during the night, last night I was up at, 01:50, 03:00, 03:45, 04:15, 04:45, 05:30. Every time I get up it is not a matter of 'plumping' a pillow and back to bed no its hard physical graft for at least 10 mins forcibly straightening his spasming legs, repositioning his twisted body in bed and then I get to lie down again.

So 0600 came around again where I have to carefully insert a plastic tube down my hubbys penis to extract the urine from his bladder. I hasten to add I am not medically trained but have had to learn stuff over the last three years that I would have preferred to have left with medical type people.Such is the role of family carers in our society today.

Around 07:30 I got him up, again that sounds so easy, but it isn't try putting trousers and socks on someone's legs that are trying to kick all the time and at the same time not hurting him. IMPOSSIBLE. Then I sit him up in bed and physically lift 87kg of man across to his wheelchair. We don't use a hoist because it hurts too much.

In our front room we tilt his wheelchair back against some cushions so that his blood pressure does not fall to dangerous levels and sometime this morning he will get a wash and breakfast as he desires. He will spend most of day trying to sit as still as possible as any movement sets off his painful spasms. i will have to readjust his spasming feet on a regular basis and reposition him in his chair to give relief from sitting in one position for too long.

Today we have a hospital appointment so I will physically lift him into our car for the journey to the hospital. I will tell you more about how that went later.

Catch me on twitter & facebook at onmybiketoo
www.causes.com/causes/501898-support-campaign-to-get-the-nhs-to-do-its-job