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. 

Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

The Inequalities of Life in the UK, Medical Apartheid.

Hubby is getting his 7cm x 7cm thoracic, spinal deep, grade 4 wound, dressed every day by the local nurses, who keep telling us he should be in hospital, because of the amount of bleeding, swelling . Do the Doctors not have a duty to listen to their concerns ?

It was with some irony, that I watched the news of a certain high profile elderly gentleman being hospitalised with an UTI. Most of us plebs would be thrown a bottle of antibiotics and be told to get on with it. Having said that  I am glad someone in this inequitable country is getting the medical treatment needed to stay healthy, and wish him long life and health, as I would any fellow human being.

So its been 4 months 4 days since Hubby sustained an injury to his back whilst on holiday. The wound is not progressing in a timely manner from the initial, Inflammation Stage è Proliferative èMaturation . Most documents I have read say that stages 1&2 should last no more than 2 months, where as the last stage can take months - years. While he still has the necrotic tissue in place his wound stands no chance of healing over and is a ticking time bomb for possible infection, and further destabilisation of his spine. Only reason he has not got systemically sick already is the broad spectrum antibiotics he is taking. 


There will be no surprise to many readers of this piece, that there is Medical Apartheid in the UK. If you have money you get treated straight away, if not they leave you as long as they think they can get away with , gambling  that you don't get too sick to treat, kind of hoping that you die so problem goes away, or fire fight as you have to go into hospital under emergency rather than urgent conditions. Do not let anyone fool you , your hospital admission unless you are in A&E and at deaths door today, is based firstly on how many spare beds, surgeon schedules, not on whether you have an urgent clinical need to be medically sorted. 


As I said its a gamble taken by the admissions people who do not always know how ill you are, what effects the delay will have on your long term life expectancy or quality of life. One might cynically  ask , and do they care? probably not. There will be no personal accountability for the decisions that they make. 


Make a complaint , be prepared to receive a letter that bears no relation to the reality that you went through, no proper investigation, no root cause analysis, just trite politicking. Remember the NHS is not a learning organisation, in the management organisation meaning of the word , it repeats and repeats the same mistakes over and over again. One life lost or ruined is one too many in my book.


So all I can ask is please do not play Russian Roulette with my Hubby's life, I like having him around. One family funeral is enough this year for anyone.