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

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

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 Hubby’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. Hubby 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 Hubby qualified for fully funded continuous care agency provision in October 2009, I am now looking after Hubby 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

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

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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

1. 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.
2. 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.
3. 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.
4. 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.
5. 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 *******

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.

Hubby 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.  Hubby’s own muscles are basically crushing his insides.

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

Hubby 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 Hubby 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 Hubby 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 Hubby another IV antibiotic course before then.

So Hubby 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. Hubby 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 xxxxx 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 Hubby 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 Hubby’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 Hubby 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.

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.

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

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...

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 ?

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....