Housing and Health a Link that is broken.

The link between Housing and Health is broken, severely limiting the lives of many our story is just one. 

 Background.

My husband contracted, through no fault of his own, a Staphylococcus infection in his neck in 2007, which crushed his spinal cord, leaving him as a high level (C3-C5) partial tetraplegic. I at the time had a fantastic career as an internationally based engineering project manager, my husband had semi-retired to support me in this. After being airlifted back to the UK, Hubby was placed in a Northern Spinal Injuries Unit. We were both treated so appallingly at this NHS unit we determined that the only way to maximise his recovery was to go private. We used our savings to ensure that he got the Physiotherapy and Occupational Therapy that would maximise his chances of regaining some function. He went from being lucky if he got 2 x 20 minute sessions a week to having 5 sessions a day of different activities. We have since 2009, having used up our savings, transferred his outpatient care to the London NHS Spinal Injuries Unit who have been wonderful.

2009 we secured continuous health care funding for him. I thought this would mean that I would be able to return to work so that we could be masters of our own destiny.

Encountered Difficulties.

• Standard / Quality of care provided in the community is not safe for someone with complex medical needs.
• There are insufficient male care workers for disabled men that need intimate care tasks plus need to be physically moved on a regular basis for pressure sore prevention and relief.
• The NHS like the local councils go for the cheapest they can get away with rather than the best fit for the disabled person. 
• Our housing is a health and safety nightmare for care agencies to stand a remote chance of giving a decent service. 
• Often trapped on first floor when very small lift out of service. 
• Councils totally misunderstand the accessible housing needs of those with severe mobility issues and are placing people in totally unsuitable, unsafe housing. 
• At National level the British Building regulations for wheelchair standard homes falls way short of the minimum space needs of those that use electric wheelchairs as more and more people do as they age with a disability. For Example, only making allowance for 1.2m turn away space from the end of a bed. Reference BS Part M[4](3b). 
• The Disability Facilities Grant only allows for pure access issues and fails to legislate and therefore fund needs that are for medical reasons. For Example, extra bathroom for care worker use to prevent cross contamination, extra space for use of physio equipment.

The Result of Deficiencies.

1. We have only had care provided for 5 months out of the last 84 months (7 years).
2. Saving the NHS 7yrs x 100hrs/week care provision allocation = [gross cost £20/hr x 100 x 52 x 7] = £728k – care provided = £684k saving.
3. I have lost more than £420k in potential earning income, my career is in tatters, my future financial security has been lost.
4. My health as sole carer has suffered and I may well now need care myself in the not distant future due to the tremendous physical strain my body has endured physically lifting my husband in and out of his wheelchair due to the lack of space here and the hours that I need to be “on duty” as his needs 24/7 care.
5. Hubby due to not having the space to use a tilt table has had more problems with his bowels and many more UTI’s than he could have had. He has lost even more function in his arms and hands that if he had had an accessible environment he would not have probably lost as he could have continued to do some things for himself. He is also very depressed as where he lives it is totally life limiting, isolating, too far away from his family and friends.

Tried to Help Ourselves.

Recognising that we need to first sort our housing situation so that we can fully engage / tackle compiling a care team we have done the following since 2009 without any success.

• Got ourselves on the council waiting lists Spalding & Peterborough.
• Contacted local charities and housing associations that specialise in accessible housing.
• Made local politicians aware of our plight.
• Looked at the HOLD scheme to see whether we could own our home.
• Maintained contact with local council funded OT’s.
• Worked with a not-for-profit organisation who said they would try and help.
• Held numerous meetings with council officials trying to explain what we need.
• Wrote and had a paper accepted for the parliamentary investigation into the built environment. October 2016.

Nothing we have done to try and help ourselves has resulted in us getting the help we urgently need.

NHS England could help more.

I note that there have been NHS monies made available for another disadvantaged group, those with learning difficulties which I am glad about as my eldest brother has a severe brain damage condition. May I please beg that those under the continuing health funding also need specialised help as everyone else is ignoring their plight. 

1. Councils and Housing Associations seem to think their duty to the disabled is being fulfilled with the building of lifetime standard homes.
• Most of these are totally unsuitable for those with higher mobility needs as it is very expensive to retrofit the extra space that an electric wheelchair user needs.
• Bathrooms are too small for the specialised shower trolleys / recliner commodes used by those in the higher need category. We have calculated we need a minimum 2.5m x 2.5m footprint.
• Most accommodation only has one bathroom, which means full shift care-workers have nowhere to change, wash separately after body fluid contamination and vice versa gives less protection to an immune compromised client. Also, means spouses / other family members are often denied the use of a bath.  


• Most architects assume a double bed in a master bedroom when many require a hospital bed + single bed. This means that a master bedroom must be a minimum 4m x 4m (without storage) to allow for safe manoeuvre space by wheelchair, and safe working areas all around hospital bed by care-workers. The other bed needed by spouse or partner as most people do not get funding for full time coverage and need to make up the deficit in care coverage.


• Extra care units always assume that people will be semi ambulant this is very clear in the way they always default to an abled-bodied kitchen and bathroom design rather making all accessible by wheelchair. Anything that needs to be retrofitted in our experience never gets done.
2. Local hospitals are under extreme pressure to transfer patients back out into the community as soon as possible, despite the lack of suitable housing and community care.
3. Care Homes and Nursing Homes are closing, leaving those with more specialised needs with the unpalatable choice of accepting sub-standard care for their needs or moving long distances away from their support networks.
4. The national campaigns for the treatment of people with Alzheimer’s have been so successful that they are starting to affect the available options for those that do not have the disease. For example, ask clinicians or community care people regarding the dangers of Autonomic Dysreflexia and you will in most cases be met with a blank stare. 

NHS England therefore needs to keep the pressure up on all the agencies involved to ensure that extra care housing unit commissioners are considering the higher needs of the growing percentage population living longer in the community with complex health and disability challenges. Local Councils / Housing Associations need to be encouraged to work more closely with NHS bodies administrating the population that come under continuing health care. I recently attended a meeting of senior strategic housing people locally where they admitted that they have no idea of the actual housing needs of the people on their waiting lists, and that when people come under NHS CHC they have even less information, because social services are usually at arms length if involved at all.

It would be helpful for NHS England to develop template housing plans that would meet the needs of much of those with complex mobility & health needs; that these are disseminated widely among architects, housing associations, councils, etc. with of course lots of input from the disability community. 

This text has been sent by myself to NHS England so far no response. watch this space. 

Reply was along the lines, Housing is nowt to do with us. Well as long as you have that attitude you will always have people staying in hospital longer than you would like !!


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Wheelchair Services

Living on the Edge of Catastrophe.

Many disabled people and their carers will recognise this state, you just about manage every day with your daily challenges, in our case inaccessible housing, inadequate equipment and of course Hubby’s ongoing medical challenges. Then something happens that threatens to tip you over the precipices of not being able to cope.

Last Tuesday we had a fairly successful reassessment of his wheelchair needs, we think the NHS may just about supply a wheelchair that stands half a chance of meeting his needs. Going to have to wait for it to be built though should get it by Christmas. Not totally convinced but will give it a chance.

So I no sooner ask our GP to write a supporting letter, explaining about Hubby’s medical need for a reclining chair because of his various blood pressure issues, pressure sore relief etc. and disaster strikes, his current wheelchair stops inclining & reclining.  This happens at of course 2:30 am Friday, in the morning. So I call the out of hour’s wheelchair telephone number, no answer. Try again at 07:30 and the engineer kindly explains that out of hours is not what I understand as out of hours and what were we doing being up at that time, i.e. 02:30am. He is allowed to sleep you know. Yep he is, but we aren’t.  

I telephone the wheelchair people in Ely, as soon as it gets office hours, try to explain how serious the lack of a fully functioning wheelchair is to Hubby, but get the distinct feeling that I may as well be speaking to a wall. 

Their engineer turns up after 2pm, too late on a Friday afternoon to do anything to help. So he just shows me the nuts that control how far back the chair goes. He knows he can’t leave me with nothing as Hubby cannot be confined to bed when we have no safe evacuation route and Hubby would have to be taken into hospital with the potential effects.

So this has left us trying to cope with the impossible. I will try and explain, I have positioned the nut on the wheelchair so that it mimics Hubby reclining position so that he does not pass out with low BP. So to get him out of bed, I stuff cushions under the wheelchair to tip it upright as much as possible lift him into his chair which then tips back a bit the cushions not being stiff enough, making it near impossible for me to get Hubby postural straight in his chair a problem at the best of times. He then travels down our corridor me watching him like a hawk for things dangling in his wheels, places himself in his safe spot in the front room. I then lodge my shoulder against the back of his chair to lift him and it up to retrieve the cushions so he can recline. When he needs to eat, I lift him and the chair back stuffing the cushions back in place. It is heavy, it is dangerous, one wrong move and he will be out on the floor, he is partially tetraplegic remember. To get him back into bed, stuff the cushions back in, stand on the footplates to keep chair down while I bring him to the front of the chair to lift him across, then lift him quickly hoping the chair propelling back does not hit his feet or me.

What next, start the campaign on Monday to try and get the wheelchair people to order the part urgently, but expect it to come from the continent so it will be a week at least. Cancel Hubby’s hospital appointment for Wednesday where he was supposed to get his picc line removed, he has had a serious infection. We thought about getting an ambulance trolley but then remembered our lift is not big enough to take one and it is potentially dangerous for Hubby to be lying down all day, catheters, eating, drinking, pressure sores, etc. are very difficult in that position. Surprise, surprise, he needs his fully functioning wheelchair to stay safe.

Readers I stand looking out on a potential precipices, this long hard physical week looming ahead, there will be fights with the people that should be helping, there will be a lack of understanding, there will be a lot of I’m alright jack sod you.

Are our wheelchair services fit for purpose?         NO

Is our disability housing fit for purpose?               NO

Is there enough support for our carers?                 NO

Does anyone give a shit?                                       PROBABLY NO.

The Inquiry

Fri 25th Sept - 02:00hrs - wheelchair tilt recline fails.

                      - 02:10hrs- phone Bartrams out of hours - no reply

                      -07:15hrs- phone Bartrams out of hours - Eng says he will convey urgency.

                       -09:00hrs - phone Bartrams main office to explain urgency.

                       -14:00hrs - Bartrams Community man turns up does quick assessment and                                               leaves. 

Weekend      -left to manage with no help what so ever.

Mon 28th Sept- 09:00 hrs phone Bartrams to find out part despite being urgent, only ordered                           on that day, not on Friday. 

Mon                   Cancel wed hospital appointment.

Mon - Wed        try various manual wheelchair options to get Hubby through all unsuitable.

Thursday          told Handicare view their stock take more important that dispatch of the                                  wheelchair part.

Wednesday     declare an adult safeguarding incident to Peterborough Social Services. 

Friday              told you will have to manage.

Monday,          chasing all day again today, no part.

Hospital Type Care in the Community

Unfortunately due to a growing list of antibiotics that Hubby is allergic to when he recolonizes  a nasty bug called Klebsiella in his urine he has to have a “Domestos” strength  I.V. delivered antibiotic to clear it up. This necessitates a trip via A&E to get a cannula fitted, check up on severity, blood tests etc. Then Hubby in theory needs to take up a hospital bed for up to 7 days for an IV to be given either once or three times a day depending on which one is chosen. Taking up a bed that someone that needs high level acute nursing input could justify having more than he.

Last time this happened we got the hospital bit done only having to stay one night, then we were sent home under the care of Medihome Ltd. This company employs nurses that mean that hospital care can be given in the community. We were very thankful to be back at home as being in hospital means difficulties getting edible food for both of us, being unable to shower Hubby, carting his special Roho air mattress with us, and generally trying to cope with his Spinal injury care in an alien environment. We loved this service, the nurses were some of the most experienced we had come across in a long time. Only criticism I would have is that the antibiotic was given via a bolus rather than via IV. I guess time cost money versus minor extra patient risk.

This time was different, we found that Medihome Ltd have not had their contract renewed to do this service anymore. We were unable to get to the bottom of what had gone wrong or whether it was purely a financial decision.  

We explained our situation to the hospital consultant who could see the sense of what we were saying, Hubby is safer at home due to his pre-existing conditions that make looking after him in a general hospital a nightmare for all concerned. He had a think about it and suggested we make use of the new Ambulatory Care Unit, going there once a day in the morning for the treatment. This having weighed up the alternative of a hospital stay we agreed to do.

So every morning for five days I got Hubby wrapped up against the chilly winter mornings, loaded him up in our specially designed WAV and off we went. Sounds okay doesn’t it? Well if only you knew what that means for Hubby, 15 minutes each way of pure pain when you are not feeling so good. It does not matter how slowly or carefully I drive, each speed bump, pot hole or road imperfection he felt as pain shoots through his spine. Then to arrive and find no disabled parking spaces adds insult to injury, as I have to unload him via our ramp quickly to get him inside the warm before his body temperature starts to drop, him having no body temperature control. (poikilothermia) .

This of course has left us asking why hospital type procedures cannot be performed in the community? Sometimes it is better for the patient.

Now a week later he has contracted Clostridium Difficile, no doubt from being out and about amongst germs that at home I try so hard to control.  So now I try and get his fluid levels up at home to prevent dehydration as of course that would mean another dreaded trip to the hospital for IV fluids.

 

Sometimes being treated at home for people with pre-existing conditions is not only more comfortable it is safer.

Personal Budgets for those under NHS Funded Continuing Health Care.

On the surface having control over your own health budget is an attractive idea, after all politicians, clinicians have been trying to sell us the idea for quite some time now, as a way of taking some control over who we have looking after our loved ones. I say, beware of Greeks bearing gifts, ask yourself what is in it for them? I know that is a very cynical view of the world, but I have been bitten in the arse too many times by the system over the span of my lifetime to be anything other. 

Argument 1: It has been proven to work really well in social care.

Counter Argument : Patients under  Continuing Health Care have a proven on going medical need, their needs are usually complex , their care workers have to have specialised medical based knowledge. Who is going to certify that training, competency, on-going refreshers etc. If the patient’s family take on this role because they have decided to directly hire someone, this will be a mine field for both the family and the care worker.  Who will pay for the training? Only sensible other option will be to hire staff via an agency, so taking away the benefits of direct hire and higher wage for the care-worker.

Possible Outcomes: poorly trained care workers carrying out complex medical procedures, increase risk of adverse incidents or at best status quo.

Argument 2: Quality of Care workers can be improved as you can pay more.

Counter Argument: Yes it is true you do get what you pay for. Care workers are under paid for they do. Under the direct budget system you will probably have two ways of employing your care workers. Firstly directly employ the staff you need, this is not as easy as it sounds and although there are a few agencies that can do the pay roll side for you, which will come out of your budget. You become an employer responsible for insuring recruitment, National Insurance, rosters, annual leave cover, employment contracts, risk assessments, care plans, discipline and training are taken care of. I have an MBA, have run my own business, so understand all this stuff, I don’t relish taking this on.

The second way will be to recruit through a care worker agency, they will do all employers stuff for you, but you will still be responsible for negotiating the supply contract and because you will be a small customer you will not get the same deals that big organisations like the NHS negotiate.

Possible Outcomes: If you do it yourself and get it wrong, you could end up in court or employment tribunal. The papers are full of such stories of things going wrong. If you use an agency you could end up with contract conditions that are worse than the current ones under the superior buying power of the NHS. Benefit is that you take out the middleman and have a direct relationship with the agency.

Argument 3: The Budget.

How many families under continuing health care think they have a sufficient budget presently? Not many I would think. It has been made clear to me on several occasions that if my Hubby requires more than he is currently getting, he will be forced into a nursing home. This leaves me covering weekends, and any unexpected extra hours needed. So now you will be expected to take that already under funded budget and manage it yourself. How will it work under the new system if the patients requirements change how quickly will you be able to get the budget reallocated? In an emergency, i.e. all your staff fall ill with flu, weather prevents staff from getting there, you will be responsible for using your budget to cover this.  If managing the budget becomes too much, what mechanisms will be in place to have the NHS take things over again.

Possible Outcomes: Life is messy and so will this be.

Summary.

I have come to the conclusion that rather than improve what is not working well with the current system the NHS have jumped on personal budgets as a means of ridding themselves of a problem that they cannot be bothered to fix. 

Care in Crisis my take on things.

A Personal Critique of the Care Industry in the UK.

Firstly I must declare my interest in this subject, as the spouse of someone with severe mobility limitations, complex medical needs and the user of NHS sub contracted care workers. My husband qualified for Continuing fully funded NHS Health care at home in October 2009. Since this time I have been continually surprised and horrified at how broken the care system in the UK is. I have been left most of the time since that time to fend for myself as the system is so broken even for those that have a proven on going 24/7 medical need. Over the years we have been sent a 64year old female care-worker with advanced arthritis who thought she would just sit and be able to read a book on nights, a male care-worker with badly managed diabetes who could have gone into a coma any shift, care workers with so many social problems at home they could not concentrate at work, several care workers with horrendous personal hygiene, a care-worker who passed out with a massive heart attack looking panic attack whilst at work, care workers that did not understand how important time keeping and reliability are,  others that were not able to comprehend the complex medical theory needed to look after someone with a spinal injury, the list is endless and the whole experience has severely dented our faith in the UK care system.   

I am not writing this to knock those that work in the care industry. Many we have come across have been good people but just not in the right job. I also admit we are tough customers as we will not accept mediocrity and poor standards.  I can not, as I know my Husband’s life and long term survival is at stake. I therefore write this paper to point out what seems to be going wrong and add suggestions as to what can be done better.

Assessment of Clients.

The system at present, and this may change due to the planned joining up of social and health care, is that a person is allocated a social worker. These people are supposed to advise the client and family if there is such as to any care help that is needed. The assessment will grade the help needed, as moderate, high or critical. This is then either funded by the client or part/full funded by the council. At this stage council OT’s usually become involved as well. Many people needing help at home need equipment to help them. The local council will have contracts with various care providers, one of which will be dispatched to provide the amount of care that the council will have allocated to the client. As many news stories have highlighted this allocation is in many cases is woefully inadequate, leading to people having to choose between the toilet or a drink, 15 minute calls etc. If you are in the top need brackets of needing care you should be advised to try and get an assessment by the NHS under the fully funded Continuous Health Care provisions. Many people with dementia have had big problems getting through this assessment as their need often seems to fall under social need rather than medical need, which I know dementia organisations are fighting against at the moment. We were quite lucky in that my husband’s condition had been subject to court precedent ruling so our path through this horrendous assessment system was pretty much preordained. To pass this assessment you have to prove a need in several medical nursing areas, mobility, continence, cognition, behaviour, medicine management, to name a few. Once you have passed this you are not home and dry, then the battle begins on how much cover you will be provided and at what quality. We ended up compromising on the spread of hours covered with me theoretically taking up the slack at weekends and evenings, but still we got issued with social care qualified level staff that were totally inappropriate for a complex care case.  Getting nursing level qualified staff under this system is impossible unless there is a legal requirement to provide such as in ventilated cases. Again the NHS as their council counterparts tries to get away with the cheapest possible option, with very little attention paid to client need. We also found that the person we talked with at NHS in charge of our case, improved his career prospects with how much money he could shave off his budget, not the quality of service provided by his organisation. Once you qualify for NHS CHC you also lose your allocated social worker and have no one who is looking after your welfare and safety, the NHS allocated bod is a purse string holder and not interested in your welfare.  

This has left me astonished that having demonstrated an on-going medical need we have been allocated just above the minimum wage care workers, who with the best will in the world , would not be care workers if they had the training & education to be something else. A demonic, downward spiralling, vicious circle. The system is indeed in crisis and now I will make some suggestions as to how to fix it.

Fixing The Quality of Care-Workers.

Stage1: Recruitment.

The care industry could learn a lot from the rail industry. This industry has people working in some very safety critical roles, some earning minimum type wages some earning a professional type wage. Let’s take the case of the recruitment of a train driver, a comparable safety related job, with unsociable hours, a specific set of skills to learn and a great deal of personal responsibility. The only real difference being their remuneration, society seems value the job of a train driver more than that of someone we entrust our loved ones too, how bizarre is that?  To become a train driver you first have to pass a strict medical looking for drug, alcohol abuse, and general health failings. If only care companies did this for their employees, may be we would not have so many unhealthy smoking care workers in its ranks. Following on from the medical the potential driver then spends 2 days at an occupational psychometric testing centre, testing for concentration, learning ability, knowledge retention, quick reactions, personality, scenario testing and finally a one to one interview. Obviously not all of these types of tests would be appropriate for a care worker, but if the industry were to work with specialists in this area I am sure a set of tests could be devised to weed out unsuitable applicants. The trainee Drivers then go on theory of rail safety courses and of course on the job training. It seems to me that as long as potential care workers have a pulse can pass the criminal record checks many companies take them on. Until this stops and some professionalism is brought into the recruitment processes things will not change.

Stage 2: Training.

The training of care-workers does not seem to follow any recognised national standards and is left very much up to the private companies involved. This leads to a varying quality of standards, leaves care-workers without recognised qualifications and no clear career progression path. Until the training standards are modular , national and signed off by a recognised organisation such as the royal college of nursing or the like, variable standards in quality will remain.  

Stage 3: Career Progression.

For as long as being a care-worker is seen as a little bit above a cleaner and a chasm below a nurse, recruiting professionally minded people especially men to this industry will continue to fail. Care workers must have a similar possible career progression to those in the nursing profession and cross over between the lines of progression must be possible. I would suggest that the lowest level should be a social care worker, senior care worker, medical care worker, senior medical care worker, assistant community / district nurse, community / district nurse. All with the appropriate level of training equivalent to their hospital counterparts in the nursing professions.

Summary & Conclusion.

People in government need to get to grips with this, the industry must change or we will continue to hear about appalling cases of abuse, and neglect. I would contend it is not the answer to further dumb down this industry sector making it the purview of charities and volunteers. This sector needs to improve the quality of its offering not devalue it further by implying that any Tom, Dick, Theresa or Harriet can do it.  There is of course a place for volunteers and charities, they do indeed add a lot to the experiences of those that need social care, by providing auxiliary staff for care day centres, entertainment, education and the like.

Finally, I have deliberately steered away from discussing funding as I believe if we do not provide appropriate care for this generation that need care we have broken our contract with them. Many  paid their dues all their working lives with the expectation that they would be cared for in later life. Now the government may need to renegotiate the contract with the current people of working age out there, if they need to they need to get on with and quickly as none of us are getting any younger you know.

Angela Cavill-Burch (MBA NEBOSH MIRO)

What could #Peterborough do better to be more #Disability inclusive ?

What could the City of Peterborough do better to improve the quality of life for it’s Disabled citizens.

Following a Twitter conversation I was given the challenge to put into words my thoughts on what would make Disabled people’s lives in Peterborough a bit easier. I can only write from the perspective of what I know, so I apologise straight away to those that have disabilities that I only have limited knowledge of such as sight, deafness, mental illness, learning difficulties. I will leave it to experts in those fields to write an equivalent essay on what would help these groups.

A bit about my background. I am the full time carer of my husband who survived a high level spinal infection that left him as a partial tetraplegic. (Paralyses of all four limbs). I also have some knowledge of what is called Learning Disabled these days as my eldest brother lives with severe brain damage caused by a TB/Meningitis as a child, also my aging mother has reoccurring mental health problems and some mobility restrictions. When I worked, I was a professionally qualified manager having gained an MBA and worked in engineering in various safety (NEBOSH qualified ) and project management roles.  

So my paper will mainly cover the difficulties encountered by those that use a wheelchair to get about. It will cover the following areas, Out and About, Access to Leisure Facilities, Access to Medical Facilities, Housing, and finally City Planning.  

Out and About.

Living with and accompanying a wheelchair user out and about really opens your eyes as to how inaccessible many areas of life are still to this group.  Even when you go out solo you find yourself asking the question, if husband was with me how would we manage in this situation or that. We live near the Serpentine shopping centre, where we often walk/roll to in the good weather to do a bit of shopping or just to get away from our intolerable living conditions to have a coffee. The first obstacle for us is the extremely small lift that is the access point from where we live. Husband can not safely use the lift solo so I squeeze in beside him so that I can press the buttons for him. Coming out of the lift we often see many other disabled people having meals “at” the food court tables.  I have put “At” in inverted commas as many can not sit properly at some of the provided tables because they are not at a good wheelchair height and have design obstacles that do not accommodate their footplates. Most of the stores are accessible in access terms for wheelchair users, well until it comes to sale time, when the pile it up high and wide fever takes over and restricts access to many aisles.  Biggest bug bear with stores is those such as W.H.Smiths that regularly narrow down walkways with temporary sales stands and exhibits. Recently I was also shocked to find out that Tesco’s had not considered the needs of the wheelchair user when putting in its opticians, they can not accommodate the optical testing of people in wheelchairs. Again who signed that off as Equality Act compliant? May be that is the problem no one is checking for compliance. On a good note, Costa Coffee has removed a rail that ran the length of their counter making access for wheelchairs a lot easier. Having a cup of coffee is not easy as well, as many cups supplied are impossible for those that have weak hands to hold. Many weak fingered like to wrap their hands around the vessel putting their fingers through the handles for extra security. Many designs make this impossible either because the handles are too small or the cup gets too hot to handle. We always use a take-out insulated cup instead with the lid as it is safer. We have only been challenged once for doing this as some cafes differentiate between drink in and take out. The other general thing that people who design shops always seem to never take into account is the height of their counters, nothing worse for an independent chair user not to be able to reach the menus / information / cash payment machines that is available to everyone else. I recently went to Dominos in Hampton Village centre and it had the worst counter height I had ever seen, it was high for anyone under 5ft high. Also I noted that the doors were very difficult for a wheelchair user to open.

Toilets for the wheelchair user can also be a nightmare especially if you rely on someone to help you. Cubicles are often too small to accommodate wheelchair plus carer, even though they probably conform with all the statutory building regulations. We also find difficulties with many of the tiny sink types supplied and end up making use of wet wipes. Also no one seems to have thought about where do you put used urine medical devices that quite a lot of wheelchair users use to urinate. Many sanitary deposal bins say female tampons/pads only.  Just to note as well, many wheelchair users have also written about the inaccessibility of the new Dyson blade hand dryers.

Smaller premises in surrounding villages / suburbs of Peterborough such as small hairdressers and other independent retailers must start to think about providing ramps for wheelchair users to access their premises especially where they have a stepped entrance. Also information displayed outside saying what accommodations they have for chair users, i.e. I will come out to you, provide a ramp, etc.

Finally a Question, when at Peterborough Rail Station last, I asked myself, how would an independent wheelchair user get from the station to the rest of town. I think I came to the conclusion that it would be via a taxi or by a very long detour to find a safe place to cross the dual carriageway. The bridge is not accessible, only has a lift on one end. Hope they address this issue during the refurbishment of the station.

Lessons to learn:

1.  Do not allow the signing off of lift sizes that will not accommodate a wheelchair user + carer. Also will it take an Ambulance trolley for medical emergencies?
2. Restaurateurs / Café owners can a wheelchair user sit comfortably at your tables, rather than having to have food on laps or sitting sideways on?  You supply high chairs for babies so why not an adjustable height table for wheelchair users?
3.  Shops do you have a counter height that someone in a wheelchair can access.
4. There needs to be some people employed by the city of Peterborough to check new business premises have complied with accessibility requirements, working with them at the project planning through to completion stages and also help established businesses do better.
5. Every store should do a trial run with store staff being placed in a wheelchair to see what the store looks and feels like from a wheelchair.
6. Toilets need to have a medical grade waste bins and again someone needs to test run facilities actually sat in a wheelchair, asking questions as can I actually use the sink, can I easily get in and out , can I transfer safely from chair to toilet and back. I am also disgusted with the notion that some advocate sitting on the toilet and the sink being in reach to use while being sat on the toilet. Hygiene?

Access to Leisure Facilities.

Many of us marvelled at the achievements of the paralympians, their dedication and commitment to train and overcome their various limitations. Unfortunately just like the rest of the general public, people that are disabled come in all shapes and sizes. Many would benefit from being able to do some physical activity but are prevented from doing so because leisure facilities supplied in Peterborough, new and old do not make the bit of effort it would require to include everyone and make all welcome. My biggest complaint are the various swimming pools in the area including the hydrotherapy pool at St Georges, have failed to realise that not all disabled people can safely use a hoist or lift chair. If you have a disability that causes,sudden spasms, have limited use of your arms, weak trunk you should not be using such a device as there is a real risk of you falling, slipping causing injury. Instead you should be transferred into a lightweight pool chair and be ramped into a pool, then floated off the chair with the help of a carer. This would also benefit people who walk badly that find steps difficult, probably people with sight issues would also find this type of access easier. I know it would be very unsafe to try and put my severely brain damaged brother in a hoist as he would not sit still, scream the place down, he loves the water, but as he has got older his mobility has worsened meaning that he finds steps very difficult. Swimming / water therapy for mobility restricted people should be prescribed on a regular basis the long term health benefits are well documented but largely ignored by community services up and down the country including Peterborough. Gyms also fail to cater for wheelchair users that want to build up their upper body strength, putting in pieces of kit that can only be accessed via an inbuilt seat, rather than a removal one. They could also provide Velcro straps and other aids that would make lifting small weights safe for the disabled.

People who organise festivals and special events. Some expect all wheelchair users to be able to park on rough / sloped / gravel / grassed ground and still be able to decamp from their wheelchair accessible cars and traverse to the event. It even happened at the mobility show a couple a years ago when we went. Not everyone is a Paralympian and do not have the strength to do that.

Cinemas that insist on wheelchair users sitting at the front. No good for my husband with all the metal work in his neck he can not lift his head that far for that long.

There are still a lot of barriers to going out in a wheelchair, that as an able bodied person you would not necessarily think about.

Lessons to learn:

1.        Pools should invest in removable ramps and light weight pool chairs.
2.        Gyms to make as many pieces of equipment as possible accessible.
3.     People that organise events should road test their facilities via a wheelchair.
4.    Cinema owners should take out some seats at the end of some rows to accommodate wheelchair users at various sitting positions in the cinema.

Access to Medical facilities.

Most Doctors surgeries in Peterborough are for the most part accessible. Many do not have a hoist available for couch examinations. Many consulting rooms are very small with inadequate door widths for comfortable access. Waiting rooms sometimes fail to make safe waiting areas available for wheelchair users, too many standard chairs in the way. Also for those that can walk with difficulty, no higher seats to make getting in and out of easier.

Dentists & Opticians are for the most part inaccessible to visit. Even if you can get through the door, the consulting rooms are full of immovable equipment which make it impossible for the wheelchair user, unless can walk a little.

Hospitals in Peterborough are pretty accessible as they are generally built to take hospital beds in corridors etc. Many mistakes were made at PCH, some of which have been resolved as building work has been completed. Still there are very long corridors in PCH with quite a few inaccessible doors that create barriers to the wheelchair user. Using diagnostic machines for x-rays etc is still an absolute nightmare for the mobility impaired. The equipment being used is just not transfer friendly.   

NHS Wheelchair services were transferred out to a company in Essex. This has been an utter disaster from where we are sitting. They have such a huge area they can not possibly get to know their clients. They seem to be utterly thrown by clients that have the top level of specialised need. We have been trying to get a loan chair for over three months now that I dare sit Husband in for any length of time so that his oh so essential chair can be repaired. We have had drivers turn up without any tools, without head rest, leg raisers, chair recliner etc. Next visit will be the fifth attempt at getting it right so that we can get husbands chair fixed of his horrible noisy recline mechanism which sounds like it is going to fail at any moment. The cost of the petrol alone must be horrendous.

Private Physiotherapists in Peterborough generally do not cater for people in wheelchairs, some will do home visits. But at their premises no hoists. We used to go to a business run out of a house that had recently gone through planning permission that no one had said to them what about accessible access? We shamed them into buying a temporary ramp so that we could get inside through the high stepped door that is typical of domestic house builds. Inside all of the physios we visited no hoists or wider couches which the disabled usually need. Another just around the corner from us is in a relatively new business park, where there is no disability designated parking and the entrance door is impossible for an independent wheelchair user to use.

Lessons to learn:

1.       All of these businesses whether private or NHS need to do the wheelchair test.

2.       Someone at the council needs to enforce accessibility at the planning stage, for both refurbishments and new builds.

3.       Peterborough NHS needs to take back its wheelchair service.

Access to Housing.

Unfortunately people who are unable to walk and totally reliant on a wheelchair will find there are many barriers to finding somewhere to live. If you are lucky and your incapacity comes when you own your own home, you will be able to apply for a disability grant to help with making modifications to your home as long as you don’t have over the prescribed limit in savings & income.

For those without their own homes that rent to provide a roof over their heads you will encounter several difficulties. Private landlords unwilling to provide secured tenancies, and local councils / social landlords that will not take into account your particular needs. You will be left with choices all extremely unpalatable and in varying degrees unworkable.  

Social Housing. You apply to join the local waiting Iist and if you have a medical need will be assessed by a housing OT. This is where it seems to go wrong, as the remit of the OTs seems to be to try and under remit your disability as much as possible so that they can make you look like you are being overly fussy about where you live. You will encounter phraseology such as, “of course you will need to consider ground floor flats” , “you know we do not have many bungalows in our stock”, etc etc. The approach is not to document what you actually need but how much they think they can get away with. This has led to me seeing disabled people all around me in places that I know they, family and their care workers must be struggling in. The council does not seem to grasp the difference between someone that needs level 2 housing and level 3 wheelchair accessible housing. Also that within level 3 there is two further categories, firstly the independent wheelchair user that is either living solo or with family and secondly the dependant wheelchair user where the home is also a place of work for care-workers. The latter needing the greater “out of the box” thinking as standard wheelchair home will not necessarily work because of the possible extra hygiene and medical requirements. Peterborough like many councils up and down the UK is badly letting down it most vulnerable in this respect.

Private Renting. If you are a dependant wheelchair user you will be extremely lucky to find a private landlord that is willing to give you a secure tenancy of five years plus so that you can apply for a disability grant to make the changes you will need to make a safe accessible home.  It is about time there was a requirement of multiple property landlords that have 10+ properties to make the 1 in every 10 accessible to a wheelchair user.

New Builds. Planning departments should insist that large new developments include an appropriate mix of all building types.

Extra Care / Care Homes / Nursing Homes. Much has been said in the press lately about the problems people face with dementia. A horrible disease that took my maternal grandmother many years ago. I have become increasing worried lately for our older folk and disabled that do not have this disease as their liberties are being taken away in the institutions above in the name of keeping those with that disease safe. These institutions should be very wary of this, it is very difficult to accommodate the very varied needs of those in these housing options. I have also become increasingly aware that families are putting their loved ones in extra care facilities because of the degree of independent supported living it gives as a more socially palatable solution as opposed to the guilt of putting loved ones in a care home and all the negative associations that has. Even when this is not suitable because of advancing dementia, lack of facilities to cater for complex medical problems and from where I am sitting local councils are duplicitous in this. Every area needs to have a mix of different facilities that cater for the different difficulties people find in later life or when disability is involved. I personally do not think Peterborough has got this balance right at present. People are being put in places according to next on the list, emergency placements etc instead of what is right for them and their condition.

Lessons to learn:

1.       Someone at the council needs to head up a task force with social services and NHS continuing care people, looking at who is on the housing list with what medical / disability needs. Then a plan needs to be put in place as to what measures can be taken in conjunction with those citizens to house them according to need and not what the council can get away with. This would include the acquisition of a small amount of privately owned bungalows to refurbish, new builds and existing Housing Association properties.
2.       Someone needs to deter families from putting disabled & elderly relatives inappropriately in extra care facilities. Checks need to be made prior to move regarding accessibility, hoist availability, specialised care worker availability.
3.       OTs at the council need more training in the difference between someone needing independent level 3 wheelchair accessible housing and those that need specialised dependant housing to house care-workers as well as tenants.
4.        Private landlords need to be engaged to try and persuade a number of them to cater for wheelchair applicants.

City Planners:

If I were to write a school report about accessible planning in the City of Peterborough it would say “could do better”. In all aspects of planning questions should be asked as to how does my decision affect a wheelchair user? can a wheelchair user access this business ? will this pavement surface I am signing off be comfortable for a chair user to traverse? Should this business owner being doing more to make this planning application more disability friendly ? Has the business done the wheelchair access test ? Should this lift be big enough to accommodate an ambulance trolley ? Can a wheelchair user get out to a position of safety quickly and easily ? should this buildings ceiling be capable of taking a ceiling hoist ? Is this public access room big enough to accommodate a person in a wheelchair? Should this new small business be allowed to have their business upstairs with no access? Etc etc….

So there you have it some of the things Peterborough could do better to make Peterborough a more inclusive city. 

Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 

• social care provision, costs, funding options, where to be provided, type of care.
• NHS Continuing care worker provision, how much, how many, where etc.
• Is a Care / Nursing Home appropriate.
• How far away would housing, care home be away from rest of family
• Is current Housing fit for purpose.
• How much should the GP be involved over and above the norm.
• Are there any other agencies involved.  
• Does the Client have all benefits entitled to.
• Is there a need for on going physiotherapy.
• Is there a need for supplies of equipment and consumables 
• Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.

Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  

Funding

I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 

• Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
• Provided with totally unsuitable care agencies for Hubby's complex needs.
• Care workers provided have not been vetted sufficiently.
• No cognisance taken of the risks to my health as his carer.
• GPs not pro-active in ensuring health and well being.
• We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
• We have had various ups and downs getting Hubby appropriate medical care.
• Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
• My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
• My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.

The system is taking the p*ss out of carers

My Hubby was admitted to hospital on 20th June with a wound on his thoracic spine that requires surgery, two lots in fact . the first was performed weeks back to de-bride his wound to aid in healing. Since which time he has been attached to a vacuum pump and is having two strong IV antibiotics which require careful blood monitoring for liver / kidney function. Next Friday he will have the final operation to put skin graphs over the wound.

So why am I still needed to help him.

1. He has a has a fear of hospitals since his appalling, cruel, treatment at a "nameless" NHS hospital when he first got ill in 2007. He can become verbally combative if he feels threatened, or unsafe. My presence ensures that he does not get labelled as a nuisance patient, as I keep him calm, he can have a row with me and it does not cause the whole ward to get upset.
2. Medical Safety : when he has an autonomic dysreflexia attack he is unable to press the call buzzer. Also since that buzzer is understood by most of the staff to mean that a patient wants them when they can get round to it, because it is not the emergency call alarm, the staff could loose a vital 15minutes in a syndrome that gets very serious, very quickly, added to which getting the on call Doctor on the ward quickly is a bit of a lottery. This actually happened, previous post details.
3. Patient Dignity :  who would want strangers how ever qualified, sticking their fingers up your bum so that you can empty your bowels, sticking a pipe down your prick so that you can urinate. Rubbing cream on your intimate parts.
4. Feeding : although he can if the right preparation is made feed himself, (using 2 functioning right fingers + thumb) he still needs a lot of help as he cant reach for things, his finger dexterity is very poor so lifting off plate lids, buttering bread, opening pepper packets etc is near impossible. if I wasn't there by  the time staff helpers would find the time, he would be eating cold food, be rushed and someone would be bound to forget to make sure his drinks bottle was refilled and near by. Also I am cooking for him many times a week because the hospital food is so bad.
5. Multifaceted problems : it is very difficult for the different numerous staff members to keep in mind amongst all of the patients on the ward , the various pre existing medical problems they have as well as what they are in hospital for. Terence has a high level spinal injury, a very painful arthritic left knee, one functioning kidney all of which have to be born in mind when interacting with him. So again I am an extra safety measure to ensure someone doesn't do something inappropriate with all good intentions.

So I am here at his side for most hours in the day. I have carefully managed a few short break escapes where I have ensured he probably wont need anything, timing being everything. I try and survive on 5 hours sleep if I'm lucky, sleeping beside his bed on a mattress on the floor, just in case he needs help during the night. The window of opportunity for sleep being slotted in between urine catheters at midnight and 06am. 

So imagine my disgust to look at my bank account yesterday and find out that my carers allowance has not been paid since 16th July. Even though I spoke to them told them I was still caring full time and was not available for work under the regulations. May be the stupid idiots have sent a letter to my home 2 hours away that I have not visited since his admittance. 

So what are people in my position supposed to live of, I'm supposed to be a kept women living off hubby meagre state pension. I do not qualify as being available for work as I am not, obviously. Besides who is going to employ a Masters degree qualified person in the type of work that would be available for a handful of weeks any way. They would turn me down as being over qualified.  I do want to go back to work, but meaningful work as befits all of the work  I carried out and experience previous to our family tragedy , also it would require my local PCT stepping up to their responsibilities and actually providing the carers that my hubby is entitled to under the continuous health care regulations.

The welfare state is supposed to be a safety net , so where is mine ? 

There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.