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. 

Housing and Care a User’s Perspective.

Introduction

I am writing this to give those working in Housing and Care one users perspective of what is wrong with the current system and why it does not work for us and from what is seen, heard, around us does not work well for others as well.

Background

Back in 2009 my then 64 year old husband qualified for NHS Continuing Care, having been infected in his neck with Staphylococcus Aureus which caused crushing of his spinal cord, leaving him a partial tetraplegic with the added complication of having only one kidney as the right one was removed due to cancer. He has lots of medical complications caused by his spinal cord injury, is very severely physically disabled, cannot walk or stand and has limited arm/ hand function, needs help with all bodily functions, but is very much fully compos mentis.

We had recently returned from working abroad so to get local social services help had rented a totally unsuitable bungalow where Hubby had to be bathed in a paddling pool sat in his commode, stretching the shower hose over him. So when we were moved to the fairly new first floor flat in a development at an extra care facility, we were relieved to have at least a very small wet room.

Very soon after moving in we realised what a huge mistake we had made.

·         The master bedroom is not big enough to take a hospital plus a single bed for me at weekends when I am in charge of Hubby’s night care. Not big enough to allow care workers enough room to safely use a mobile hoist and be able to access the bed all around for using sliding sheets etc.  This has meant that I feel I have been forced to use a very dangerous to me manual lifting regime to get Hubby in and out of his wheelchair / bed. The room is carpeted which is causing difficulties in keeping it hygienically clean, water transfer from wet-room, accidents,  wheelchair tire tracks. The building construction means there is nothing solid to attach either a ceiling or wall track hoist.

·         There is a lack of storage space which means when I sleep in the spare room I have a usable bed which is surrounded and crowded out by stuff that we have nowhere to put. No secure storage for bicycles (my hobby), lack of built in wardrobes and not enough space to be safe in the flat and build some ourselves.

·         The wet room is so small that we have had some accidents when manoeuvring him in his shower chair, painfully catching my fingers, Hubby’s knuckles and toes.  

·         All of the doorways are so narrow that Hubby has to be extremely careful when lining up his chair to get in and out of the two rooms that he uses.

·         Our living room is too small to take a sofa, chairs and Hubby’s wheelchair plus the two side tables he needs so that things are within his reach.

·         All of access in, out and around our flat is very difficult to manage so Hubby is in effect imprisoned in two North facing dark rooms except for the occasional trip out for hospital visits.

·         Only access is via a lift that is so small that in an emergency it will not take an ambulance trolley. Also when we venture out I have to send the lift down and run down the stairs to meet it.

·         Our care workers when here sit at our small dining room table, with no proper storage place for their files and paperwork.

·         One luxury we have is a second bathroom which gives our care workers a separate hygiene area, and somewhere to store the hoist that they have to use. Not really a luxury as our home is their place of work, we don’t want to share a toilet with them. Accidents happen as well and they need some where to shower and change. It also means that I get to soak my over worked family carer aching bones in a hot bath now and then.

·         Our kitchen is totally inaccessible to Hubby.

·         A couple of years ago our housing association thought it a good idea to take away the wooden threshold strips leaving a 1 ½ inch gap under the door which then sucks into our flat the second hand cigarette smoke of our neighbour. Not an ideal living arrangement for a tetraplegic who is on the very limits of being able to breathe unaided. Also she is an added fire risk that with limited evacuations options is not acceptable to us.
Since writing this in January, our next door neighbour set her flat on fire, sadly losing her life. Despite what was reported in the local paper we did not have a safe exit option, we were trapped in our flat while they put the fire out. There was dense smoke blocking our only exit from the flat. It is even more urgent that we are moved to some where that is safe.

Needless to say we are both totally fed up with living somewhere that is totally unsuitable, is not enhancing what little life Hubby has left, and putting me as his carer at physical risk.

The Challenges

So what have we done to try and remedy the situation?  Three years ago we met with a council OT, who agreed that in principle we were housed in the wrong environment, were awarded the maximum points for a medically based move. Looking back on the interview, with the hindsight of doing more research, I now realise, from the way we were spoken to, that we were being condescended, that our concerns were not being listened to, but being replaced with pre-conceived notions of where disabled older people should live.

Since being on the housing list we have met with the obvious attitude that “you should be grateful for a roof over your head”. People in general do not recognise that disabled people should have the same choices as everyone else as to where and what kind of place they want to live in. This is obvious with the few places that we have been given the option of looking at. OAP bungalows with even less space, houses with tiny internal wheelchair lifts that Hubby cannot operate safely etc. It is becoming very obvious to me that no one has thought to build or adapt existing bungalows to meet the growing need for disabled wheelchair users that maintain their independence in the community by making use of care teams. Local Authority teams do not recognise the different space requirements of totally independent wheelchair users and those that need a care team.

The other day I looked at the floor plans for a new over 55 development in Bourne Lincolnshire. Not one of the floor plans had a bedroom big enough to accommodate 2 single beds plus wheelchair manoeuvre room or a separate hygiene area for care workers. Everyone seems to think the elderly and disabled want to live on a postage stamp.

So having increasingly despaired with the social housing market I turn my sights to private rentals. We would have to contribute more to our rent as the housing benefit allowances for private are not as generous, but as I fully intend to return to work as soon as possible this is not a big issue if we can get a landlord to work with us to make a bungalow accessible. We came across somewhere that we could have made perfect for our circumstances, it needs some alterations for has lots of potential. We got past the first hurdle of the rental agencies that usually suddenly make the property unavailable to disabled enquirers, got to speak to the landlord to explain our situation. He seemed very understanding of our plight, I explained that we would need to change the on suite bathroom into a wet-room out of our meagre savings, then once moved in apply for a disability grant for the other changes that we needed.  Also that longer term if my work situation panned out we would look to buy it off him. I also explained that we would need some sort of secured tenancy as to apply for the grant the council want to know you can live in the property for five years. Anyway we left the conversation at that point, as we had to involve the estate agent he was using to manage the rental. So I talked it through with the agent explaining the different type of rental agreement we would need, as she had no experience of other types other than the short-hold, 6 month, 12 month assured tenancies more usual in the private rental market. The estate agent and landlord subsequently had a conversation and unfortunately the landlord was not in a position to grant us a 5 years short hold or an assured tenancy so our perfect property fell through.

This means that in most cases the private rental sector is totally unavailable to mobility restricted renters, but the local authorities / social housing associations are not providing it either, does not sound very equitable or fair to me, or looking after our most vulnerable in society, does it you?

Still we have not given up, we found a company that sounded promising at first. They said they would find an investor to buy somewhere for us, for us to rent from them. This company so far has failed to find such an investor to help us.

Then I heard about a scheme for part ownership / part rent shared ownership scheme especially for disabled people on benefits. Guess what no help there because Hubby is over 65 and because I hope to return to work.

A Way Forward.

With the pooling together of Health and Social Care I am hoping that local authorities will feel more obligated to get housing right for those that have care teams. There needs to be recognition amongst all involved that health does suffer if housing is not right. Not just the disabled person as well, but family carers and the risks in the work place for paid care workers.

More people are having care provided at home, not just the short visit kind, but up to 24 hour coverage, which enables them to stay out of care / nursing homes. Suitable housing must be made available for this group.

Space for a wheelchair user is not a luxury it is a basic health and safety requirement.

Social Housing Providers need to do the following :-

1.       Make those needing specially adapted properties a priority as this group has very little choice to go elsewhere.

2.       Study in close detail, and case manage the disabled / older persons on their housing lists.

3.       You may not have the right housing stock. Think outside of the box where necessary to provide solutions either through new build or the adaptation of existing open market available properties.

4.       Listen carefully to the disabled as to what they need to get by, they are the experts on what it takes to get them through on a daily basis.

5.       Make sure properties are not in socially isolated areas, disabled want the same location choices as everyone else in society.

6.       Remember it will be a home but also in many cases a place of work for care workers.

7.       Stop putting wheelchair bound users on anything but the ground floor, it is not safe, even with lifts available , if cannot walk down/upstairs.  Increases evacuation time, can get stranded outside home if lift out of order. Puts unfair onus on care workers and fire department to evacuate person.

We will keep fighting on to get suitable housing for ourselves, not what someone else thinks is suitable but what we know will work well for us.

Angela 

Housing Standards Review - My thoughts

Dear Committee,

I hope you will accept my open letter regarding standards in housing as much of your form does not give me the chance as a carer of a severely mobility restricted disabled person the chance to tell you what accessibility  means to us at the sharp end .

Scope:

My comments are directed towards the housing standards for a person confined to a wheelchair and what they require to live safely.

What is wrong with the current system.

The current system of building accessible housing fails to prescribe workable measurements to give builders the information they need to make sensible decisions on the practicalities of living from a wheelchair. For example it is no good to prescribe a minimum size for a disabled persons bedroom space, unless the maximum possible needed space is taken as the standard, for example a single disabled wheelchair user using an ordinary bed who can transfer independently  has different space needs to a couple , one of which needs a hospital bed with all round access + a further single bed all to be housed in that room plus hoist plus medical equipment . People seem to not understand that unfortunately many couples with one disabled cannot share the same double bed.

There are also some regulations that are not working and I have seen regularly ignored with good reason, for example the maximum distance from a toilet to a wash basin, these anomalies need to be found in the existing legislation and be removed. In that example the existing regulation seems to be advocating that someone sit on the toilet and wash their hands at the same time, which is a hygiene no-no and encourages the dangerous use of the wash basin to aid standing up from the toilet.

There are also lots of things that the current legislation does not prescribe and because of that are not included in the building standard for disability housing. I recently visited a so called 2 bed purpose built wheelchair standard bungalow which we turned down as totally unworkable for us on the following grounds, the open plan living/kitchen/dining area was so small that it did not have sufficient room for furniture for the abled bodied in the family to sit on plus manoeuvre room for the wheelchair user , dining table , decent sized fridge freezer or anything a kin to modern living. Storage space in the place was totally inadequate. The master bedroom was too small to accommodate hospital bed plus further single bed. The garden was extremely small with no shelter and no privacy. The wet room was huge but it was expected that everyone using / living in the house would use that one bathroom, totally unhygienic and would leave my immune compromised husband open to cross infection from his care workers. There was no where to put the care-workers and their paperwork , equipment etc. The person who designed/ built the property has obviously never had to share their living space with the average offering of care workers. All of the door thresholds were supposed to be level but had fittings put on them that caused a “bump” to a wheelchair user. All of the doors were slightly wider but had standard handles making them impossible for a wheelchair user without upper body strength to use, no use of sliding doors which are easier to operate and save on space. There was an absence of modern technology that could have been utilised to make it easier for a disabled person, no electronic front door opening but keys that someone with hand weakness cannot use. The house had carpets as well fitted which are a total no-no to most wheelchair bound people. The bungalow had been built in an isolated estate too far away from the local amenities for the user to access without major investment in taxis or mobility vehicle.

Where we live now we access our totally unsuitable first floor flat via a lift that is so small it is not big enough to fit an ambulance trolley in, that does not have a manual way to work it when the lift is out of order or locked out during an alarm activation. Also no mirror at foot level so that a wheelchair user can see when his feet are getting too close to the wall. Our local shopping centre also has a lift that is too small. Building regulations should have been in place to stop these from being built that way. My point being what we have now is not prescriptive enough so having less detail will make the situation worse.

The decision your committee makes will have real life effects.

Imagine if you will, the situation my husband finds himself in. Every morning your wife gets you up from your bed, physically lifts you into your electric wheelchair (not enough room to use a hoist), that has been carefully squeezed in between the two single beds. You reverse very carefully as even misjudging it by a fraction means banging into the wall behind you, causing pain to go right through the metal work in your neck down your already damaged spine. Making sure you have folded in your power controller you carefully shoot for the centre of 75cm width door so that knuckles do not get banged, then turn as sharply as you can so as to not bang into hallway wall, traverse down the hallway that always has the light on because it is so dark. The door to the living room is a little wider so a bit easier to turn right into. Drive up to the TV and use it as a mirror to reverse into your spot in between the other furniture in the room where you will stay most of day, day in day out. Your wife brings you a bowl of water for a wash because your wet-room does not have an accessible sink. On shower days you are put in your wheeled shower chair and very carefully showered in your tiny wet room , where you regularly bang your feet and hands on the toilet furniture because it isn’t big enough. You are then nearly thrown out of the chair as your carer pushes you across  from vinyl to bedroom carpet. Then resting in your hospital bed afterwards are assaulted by the stench coming from the bathroom that never dries out properly due to bad drainage and ventilation. So, Bedroom – wet room- living room that’s your world as you cannot use the inaccessible kitchen or dining area which is used by your care staff as an office. Going out is very difficult because of all the barriers to freedom of movement. So there you sit in a room with insufficient day light, wondering why you are still alive and what’s the point.

If the builders get it wrong it will affect the quality and health of our disabled who have enough to challenge them in everyday life as it is.  

So the nub of my comment is if you do not prescribe to a builder / designer what is acceptable and workable in the way of space & other requirements for a wheelchair user , they will not ordinarily understand not being in that situation themselves and opt for what they know best, cram as much in to maximise profit per square metre.

I hope you will accept my comments as a lay person living with someone with a severe mobility disability. 

Commission on Residential Care - call for evidence

Dear readers for what it is worth, here are my thoughts,

Introduction.

I write this paper as the carer of a complex spinally injured Tetraplegic husband, the sister of a severely affected learning disabled adult, and the daughter of an adult with reoccurring, severe, complex mental health episodes.

Firstly to answer the specific questions posed by the commission.

The Questions.

1.       How do you define residential care?

Residential care to me is the care provided in registered care homes, nursing homes, and hospices. These places are supposed to provide round the clock appropriate support for their residents and should provide a safe and comfortable place for those that need extra support that in their particular cases living in the community could not give.

a.       Do you see extra care, retirement villages and other “housing with care” options as different by definition?

Yes, they should be but it is becoming apparent to me that because of the stigma of putting loved ones in care homes, many family members are inappropriately putting their relatives into places like this and then wondering why there are problems and sudden deteriorations in health.

b.      What makes them different?

These extra care facilities and retirement villages should be for people that need minimal care and help for daily living tasks. They should be for people that like to be part of a community feeling but still want a high degree of independence. Excellent for people who live on their own to combat loneliness, make them feel safer as people they can call on if needed. Have replaced the old warden controlled bungalows in many areas. They are totally unsuitable for people with late on set dementia, or others that need round the clock support to stay safe. The latter, because they are not usually big enough dwellings to accommodate full time care worker teams or the medical equipment that comes with complex medical conditions.

2.       What outcomes do people value when it comes to care and support?

Firstly that whatever environment a person lives in it supports them to live life to their fullest potential. That it gives the person as much choice as they can handle. Examples of, that they can choose, if appropriate to their condition, when to go to bed, get up, eat, what to wear, who to associate / socialise with, what hobbies to pursue. That the care and support provided is delivered by people trained appropriately to their need. For example people with dementia have access to specialist care-workers to help them through the different stages of the illness, people with learning difficulties have care staff that appreciate the need to constantly re enforce learning, people with a physical disability have care workers that understand the processes of SCI / MS/ MD / spina bifida / arthritis /blindness / deafness etc.

3.       Can existing residential care deliver these outcomes?

Residential care in its current form has the general reputation that the Victorian workhouses had of the past. That of somewhere no one wants to end their final days in. I believe that things will have to change or people of the next generations given a choice will refuse to use them, which cannot be a sustainable business model for the future. People’s expectations of living standards have and will continue to change. Where in the past it was quite acceptable to live in a bed sitting room arrangement with a shared bathroom / dining facilities, many would find this arrangement if fully compos mentis totally abhorrent today.  Residential care is also being used to paper over the cracks of the shortage of wheelchair accessible homes, this abuse needs to stop. Many generations now find communal living an anathema , people value their personal space, so the thought of communal sing-a-longs, being forced to associate with people they do not know, eat and live with strangers can be very frightening. The generations to come will value technology, [that technology use has changed the way we socially interact] like doing things many times on their own, will be more orientated towards their own inner circle of family and friends.

One other thing to note is that people are becoming more and more, savvy regarding medical knowledge and will not accept the poor standards of training and knowledge currently prevalent in the care sector.

So in short I believe the current model is unsustainable and will not deliver the expectations of next generations that end up needing to use such facilities.

4.       Is there a difference between good residential care and other forms of good care, if so what makes it different?

Good care where ever it is delivered should be appropriate to the individual needing that care. The persons delivering the care must be appropriately trained. The best examples of good quality care are that which is delivered by family carers because they usually actually care about the outcomes of the cared for, somehow paid care-worker companies need to “bottle this” and replicate this among their workforces. Hospices seem to also have a generally good reputation, but since their clients usually have a poor prognosis this may be the reason, or it might be because they tend to be staffed with competent specialist nursing staff.

Good care is a person centred approach that recognises that we are all different with various aspirations. That provides appropriately trained staff, that are adequately supervised. That has measures such a password protected remote web viewing so that family can see what is going on in the facility at any time as a reassurance.  Care provision that fulfils an individual’s hierarchy of needs as defined by Maslow, basic needs (e.g. physiological, safety, love, and esteem) and sometimes growth needs (self-actualization) as well or as Carl Rogers would have it that humans have one basic motive, that is the tendency to self-actualize, to fulfil one's potential and achieve the highest level of 'human-being-ness' they can.

Residential homes that provide services that actually do more than just house and feed their clients have to been seen as providing good care.

5.       How will the role of residential care change in the future?

There will always be a need for establishments that provide care that would be provided in a hospital setting if they did not exist. I cannot see how residential care can change in being anything but the place of last resort for most groups that would need to use their facilities.

It is my view that residential care should only be used in the following circumstances,

·         Where the individual’s current living arrangements would mean them coming to significant harm due to a mental incapacity.

·         Where an individual actually wants to live in a communal setting and a retirement village / extra care facility is not appropriate.

·         Where specialised end of life care is needed.

·         Where specialised respite care is needed and only if not possible to be done in own home.

Since it is the home setting of last resort in most cases, it should be made as painless a procedure as humanly possible. People should be able to have their personal possessions, some personal space, access to technology such as Satellite/Cable TV, internet, phones etc. Personal bedrooms, bathrooms, sitting space. Should be more like a high class residential hotel. In the future I can see the need for these places to have unique selling points, such as hydrotherapy pools, access to physiotherapy, specialised OT sessions etc. to make them more palatable.

6)      What future role would you like to see for residential care?

i)        #1 priority where ever possible and if the individual wants it, care should be provided in a persons’ own home.

ii)       More action needs to be taken by the government to ensure there are adequate wheelchair accessible homes available for people in the community to rent and that disability grants for people to adapt their existing homes are still supported and adequately funded.

iii)     That there is a national set of training standards and qualifications for care workers.

iv)     That care workers are considered in the same line of promotion as hospital health assistants and nursing staff, and come under the auspicious of the Royal College of Nursing in the setting of standards and codes of conduct.

v)      A national framework is developed as to the necessary levels and standards of staffing needed to look after the various conditions supported in a residential care / nursing home.

vi)     That someone is made responsible for taking an overview role of the types of care available in residential care homes large and small ensuring that they meet the spread of need in each geographical area. For example make it unacceptable for immediate

family to have to travel great distances to keep up a relationship with their LD kin.

vii)   A designated person is made responsible for ensuring that extra care and retirement villages do not house people that are inappropriate to their level of expertise.

viii)  That fire departments are stricter on the requirements for safe evacuation from shared premises housing people with particular needs, whether they be extra care facilities, retirement villages, care homes, or nursing homes.

ix)     That council planners ensure that mobility restricted individuals are not housed in buildings where they cannot be easily evacuated quickly from in an emergency. Should be a maximum time limit for evacuation like an aircraft. That building owners conform to ‘excellent’ standards of maintenance, heating, ventilation, noise control, rubbish storage and collection. 

I still firmly believe that moving into residential care will always be seen as the course of last resort for many. If the sector were developed carefully, taking into account the aspirations of the new generations, and so that no one that did not really need to be in such an establishment had choices of where to live, more people would be better accepting of the time when they became too ill / dependent to live on their own.

In summary.

Let me use my knowledge of my own family to ponder the alternatives they currently have as an example of how things have to change.

1)      My Severely Learning Disabled Brother.

My 47 year old brother has the mental capacity of a limited 2 year old having contracted TB Meningitis and epilepsy as a baby.  He lives over 60 miles away from his family in a small residential home.  The staff to care ratio is higher than some establishments, I believe it is 1 carer to 2 residents. The distance from family has severely limited the contact of family and made it impossible for me to maintain reasonable contact despite wanting to. Social services do make monthly runs to mother so that she can maintain some contact. He seems to be happy where he is, his care-workers genuinely seem to care about him. When he has not been happy in the past he has exhibited behaviour that lets us know that things are not well. Hand biting and self-harm being some examples. So well run and appropriate residential care in this case but too far away from his family.

2)      My Mother with reoccurring mental and physical health problems.

My 75 year old mother lives with her partner who also has mental health problems in a tiny one bedroomed council provided bungalow. She suffers from acute episodes of mental health illness, where she becomes totally detached from reality, becoming a danger to herself and verbally abusive to those around her. She also has mobility problems caused by the excessive weight gain caused by the mental health drugs she is on and a stomach hernia / intestine problems. She likes living independently where she is when she is well. But if you were to visit their home it is quite obvious that they are not coping well, the place is dirty and untidy. She has a visit by care worker every third day to help her shower. It is my belief that she and her partner are not supported appropriately by the social care system. They would be better living on an extra care complex, where they could socialise, people could keep an eye on them regarding their mental states and help with cooking and cleaning.     

3)      My Husband with severe and complex physical medical problems.

My 69 year old partially tetraplegic, husband and I (46) live in a two bedroom first floor flat in an extra care facility. He has passed the assessment for NHS funded continuing health care (CHC) and is supposed to have a team of care workers to look after him around the clock, enabling me in theory to return to work. We have had problems with the provision of care workers from the onset of the award of CHC. We find it incomprehensible that having passed an assessment that proves an on-going medical need we have been supplied with minimum wage under qualified care workers, that lack the capacity to take on board the complexities of his medical needs. We also live in housing that is totally unsuitable / unsafe for a full time wheelchair user. We have been put under not so subtle pressure to dissolve our marriage and place my intelligent, fully mentally aware husband into a nursing home to save the authorities money. Instead we have struggled on at home myself, putting my own physical health at risk, being used as a human hoist because of the space/ safety issues with using an electrical hoist in such a confined area. My husband becomes very down with being confined to four walls every day and longs for the private use of a small garden. We are top of the rehousing list on health grounds but since there are not the suitable specialised properties available and the lack of willingness to find us a bespoke solution to our housing problem here we sit and have done for the last three years. We are currently trying to help ourselves by engaging a philanthropic property investor consultant to buy us a bungalow for us to rent, at first with an option to buy should I get back to the full time work I dream of. We can then apply for a disability grant to make the modifications we need to make. Safety net what safety net? So in our case residential care is not wanted or welcome at this time.

Finally, slightly off piste, as it were, if more people are going to end their days in shared facilities such as residential homes. Someone is going to have to do something about the inordinate numbers of care workers that smoke. Smokers and non-smokers cannot happily co-exist.

Wheelchair Accessible UKHousing

An essay on the plight of wheelchair bound citizens in the rental housing market.

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.  

I write from personal experience as we have been looking for a home, rather than a roof over our heads on and off for the last 4 years.  Currently we live in a first floor, small two bedroom flat, which although it has a tiny wet room is totally unsuitable and unsafe for both my husband and his care workers. We have written to the council regarding the reasons why we need to move and they have given us a high priority for housing that just does not exist, and only allocated us 2 bedrooms which is totally unworkable for us. We need rooms of varying sizes for the following, 

• 1 small bedroom for me to sleep in during the week so I can return to work,
• 1 small study / changing space for care-workers,  
• 1 small room / space to house a tilt table + all the spare equipment + charging space,
• 1 very large (4m x 4m) master bedroom capable of taking a hospital bed that can be accessed all around + another single bed so that I can look after Hubby at the weekends during the night and maintain some intimacy in our marriage. 

We also need a large wet room + separate shower / washroom to maintain separate hygiene with the care-workers. Then open plan living / kitchen space. Barrier free front / rear access doors and interior doors wide enough to easily manoeuvre an electric wheelchair through. Outside we need somewhere safe, sheltered for Hubby to sit to make sure he gets enough daylight to maintain his vitamin D levels which is very important to his bone health.  

  

So far we have been offered two bedroom bungalows which report to be accessible which we know will be totally unsuitable and lead to us swapping our current unsafe conditions for even more problems such as

• ·         serious infection control issues,
• ·         rooms not big enough to allow for free access of a wheelchair,
• ·         having to give away all our possessions to squeeze us in,
• ·         socially isolating Hubby even more than presently,
• ·         no storage space or room for rehabilitation equipment,
• ·         no cognisance taken of the fact that not only a home but a place of work for full time care workers .

It is becoming increasingly apparent that no one is interested in supplying housing that is fit for purpose for disabled people. They are supposed to be grateful for anything they are offered, even if it will contribute to deterioration in their health and hastening the day they will need to move to a nursing home.

So having increasingly despaired with the social housing market I turn my sights to private rentals. We would have to contribute more to our rent as the housing benefit allowances for private are not as generous, but as I fully intend to return to work as soon as possible this is not a big issue if we can get a landlord to work with us to make a bungalow accessible. 

We came across somewhere that we could have made perfect for our circumstances, it needs some alterations but has lots of potential. We got past the first hurdle of the rental agencies that usually suddenly make the property unavailable to disabled enquirers, got to speak to the landlord to explain our situation. He seemed very understanding of our plight, I explained that we would need to change the on suite bathroom into a wet-room out of our meagre savings, then once moved in apply for a disability grant for the other changes that we needed.  That we would make changes that would not devalue his property. Also that longer term if my work situation panned out we would look to buy it off him. I also explained that we would need some sort of secured tenancy as to apply for the grant the council want to know you can live in the property for five years. Anyway we left the conversation at that point, as we had to involve the estate agent he was using to manage the rental. So I talked it through with the agent explaining the different type of rental agreement we would need, as she had no experience of other types other than the short-hold, 6 month, 12 month assured tenancies more usual in the private rental market. The estate agent and landlord subsequently had a conversation and unfortunately the landlord was not in a position to grant us a 5 years short hold or an assured tenancy so our perfect property fell through.

I have come to the realisation that this means that in most cases the private rental sector is totally unavailable to mobility restricted renters, but the local authorities / social housing associations are not providing suitable properties either, does not sound very equitable or fair to me, or looking after our most vulnerable in society, does it you?

Any ideas people how we are to find suitable housing that meets our needs.  

If is quite obvious that the local authorities do not have the expertise to deal with housing the severely mobility disabled. This leads to their housing needs being put in the too difficult basket by the housing managers leaving the disabled without suitable housing for very long periods of time. I would like to suggest a new means tested system. If the disabled person does not have assets, capital or compensation pot, that the local authorities give them a personal budget to either build or buy housing that can be adapted. With that grant being repayable on the death of the disabled person, either by handing over the house for someone else to use or by selling and repaying the grant. This would mean that the disabled could ensure that they have the housing that fits their particular circumstance rather than what the local authorities think they need. In our case we would need £200k to find a 3 bedroom bungalow that we could adapt to our needs within that budget. (175k cost + 25k adaptations ) . I know that would mean if my husband died or became too ill to live in the property I would be homeless but I could accept that if that meant he could live some where suitable.

Readers will think this too expensive, but it is only marginally more expensive than the new not fit for purpose so called accessible housing that is being currently built or actually not being built as there is a national shortage. Also there are savings in poor health outcomes that the disabled in poor housing currently suffer.

We need some out of the box thinking to help get us out of the current housing problems faced by the severely disabled. 

Mobility Accessibility " Build it in, don't Exclude it out"

Most builders , hoteliers, landlords if you have a conversation with them about including accessibility in their building will tell you of how difficult it is, how confusing the regulations are, as an excuse as to why it does not figure on their collective radars unless confronted with a situation they can not get out of.

I know in certain situations there is a need to build to the full accessibility standards, providing the ramps , hand rails, contrasting colours, sound aids etc. and the more of this the better of course.

I would like to get people thinking of what they can do to make everyone's environment more mobility accessible and not to the exclusion of the able bodied, giving a little more choice all round.

1. Showers -
If you are going to have a separate shower and bath , why not consider making the shower a wet-room area? Wet-rooms can look very stylish / chic and if the opening wide enough allow access to a wheeled shower chair. They are easier to clean as well.

2. New build / Refurbishments -
Why not make the doors wider than the norm, it does not cost that much more, allows access to wheelchair users. Hotels easier access for those hostess trolleys, residences easier to move in with furniture.

3. Steps & ledges.
Is it really necessary to have that high lip to a patio door , that step to the front door ? Able body people will you never have a visit from a wheelchair-ed friend member of family?

4. Luxury Hotels.
You supply high end furniture to your hotels, why not investigate whether companies do stylish high-low reclining  beds. Even more luxury everyone would love.

5. Restaurants.
You supply parents with high chairs for their children, why not adjustable(height) tables for those in wheelchairs ? When buying new tables do you think about whether someone in a wheelchair can get their foot plates under the table ?

6. Carpets.
Does that carpet have to be a thick pile ? Tiles can look great, are easier to clean and allow easy pushing for wheelchair users.

7. Lifts (Elevators).
Is the lift you are building big enough to take an ambulance trolley, electric wheelchair plus attendant / carer ?  Does it have a low set mirror that allows the disabled person to see how close their feet are getting to the edge. Dual controls at a good height to allow for not being able to reach over / turn around to operate.

8. New Pool
Make one access point ramped, not all disabled people can use hoists. People love zero entry pools, they can sit in the shallows keeping cool, older people find steps difficult, severely disabled people find floating out of a wheeled pool chair a lot easier and safer.

This list could go on and on, but hopefully has been thought provoking enough to get everyone thinking about what they could do to make things a little more accessible, for EVERYONE.

look around you, while you are refurbishing / building , at what YOU can do and not at what you can't do.