Wednesday, 20 January 2016

One Family’s Struggle due to a lack of Strategic Housing.


I write from personal experience and not from any formal qualifications in urban planning, architecture or the like. I do though come from a background of working in international engineering project management, having worked in post-Gulf- War II, Iraq for 2 years, where I spent time living in a 100, person tent, a 20ft container, old classroom made into a dormitory. I then spent another 2 years working in Abu Dhabi as a project manager on the master plan project, developing the plans for the building of a new off shore port and industrial zone. So I do have some knowledge of strategic and master plans. I also have knowledge of housing in the USA as I spent many of my summers as a teenager working on my Uncles real estate portfolio over there.

2007 my life changed when my Husband caught a staphylococcus infection in his neck, that over the space of four days turned a very fit healthy man into a partial tetraplegic. Most of 2007 I spent living like a Hobo, spending as much time as I could with him in hospital. 2008 he was well enough to leave hospital and being what many would say was na├»ve about what living with someone with a severe disability would be like, we decided to try and still live the life we had planned in Australia, as I had a job waiting for me out there, that had been on hold, pending his health. Unfortunately, by May 2009 my husband’s health deteriorated to such an extent that we felt we had to return to the UK where access to the NHS would we felt ensure his longer term health safety.

Back in the UK we choose to set up in Peterborough, not through any particular love of the place, but felt it would mean that I could commute easily into London, where I was the most likely to end up working with my skill set, but still be within a reasonable visiting distance from family in Lincolnshire, or so we thought.

At first we set up in a hotel as finding wheelchair accessible rental accommodation was near impossible, when I was no longer working, Husband was not entitled to disability benefits at first having been abroad for a year. Getting any sort of support when classed as homeless even the GP refused to register us, was quite an eye opener to both of us, both having paid our taxes and national insurance all our working lives. We finally saw that our only way into the system was to rent a place that we knew would be unsuitable so that we at least had an address, to gain access to the services we needed. So we bought numerous ramps as the bungalow had steps, Husband was washed in a kids paddling pool with the shower hose stretched over. Then suddenly, having an address, and as if by magic, district nurses, social services, GP’s all appeared to actually give a damn that we were struggling.

October 2009, Husband is assessed as needing Continuing Health Care, which I hoped would mean I could return to work, so that we could be masters of our own destiny. Social Services managed to find the only available accommodation that had a small wet room, so feeling it had to be better than where we were, we moved leaving the squirrels in the roof to themselves and our landlord without his source of free electricity to heat his greenhouse. (Yes, I kid you not). 
Very soon after moving in it became very apparent that we had made a huge mistake, so asked to be put back on the housing list. The two-bedroom flat was way too small. The wet room too small for Husband’s reclining commode, and inaccessible sink, means washing out of a plastic bowl. The Master bedroom way too small for two single beds, one of which a hospital bed and have sufficient room for care workers to use a mobile hoist, sliding sheets etc. The construction of the building precludes the fitting of anything to the walls or ceiling. The kitchen inaccessible, the dining room too tight after putting a desk in for the care workers to sit. The lounge was extremely small, meaning that Husband has to sit in a very particular spot so no one taps his feet. The spare room became our only means of storage, plus a bed for me when / if we have care workers on night duty. Husband’s life is in two rooms, it finds it impossible to use the shared facilities on site as all the doors are not wheelchair user friendly, he finds the type of unfortunate people housed here, through no fault of their own are mainly not the type of people he wishes to mix with. If on sunny days he tries to sit quietly in a garden area he finds his privacy is invaded, also there are no sheltered areas so that he does not become cold. Where we live feels like a care home even though it is supposed to have a balanced residency mix. There are also access and safety issues surrounding the only very small lift which gives access to this first floor accommodation.
All this was bad enough, then after complaining for months regarding the invasion of second hand cigarette smoke coming from our neighbour she unfortunately set fire to her flat. Trapping us in our flat with smoke bellowing under our door. Luckily the fire crews brought the fire under control as I believe they were starting to think about smashing windows frames on our side to try and evacuate Husband and myself. This procedure would have certainly broken many bones in his body. Hope readers realise how angry we were about this, having near prophesised that this was a credible risk. Following this our GP kindly agreed to write us a letter which they hoped would aid us in convincing people that we indeed did need to move.    

The Peterborough Housing List.

The first stage was a visit from a housing OT. Looking back alarm bells should have rung when much of her conversation was about making compromises and not about the type of accommodation Husband needed to enhance his life or his independence.
We were told to keep looking at the choices list for suitable housing and apply when it became available. So I did just that, a sole destroying exercise looking at properties that were extremely unsuitable. It also became apparent that if we applied for a 3 bedroom property that we could adapt, we were automatically discounted as we could only look at 2 bedroom properties.
Since 2010, we have had 3 properties come up to go look at,

Property 1 – Dogsthorpe – a semi-detached house that had obviously been converted for a disabled child. 75% of the property was inaccessible. The through floor lift would have been unsafe for tetraplegic Husband to try and use. The bedrooms were too small. Also it was on a huge estate, that I worried about our personal safety.
Property 2 – Castor – a small bungalow - all the rooms were too small, it only had one bathroom, this village is extremely small so isolation would have been a problem, too far away from our Lincolnshire based family.  
Property 3 – Yaxley – a reportedly purpose built wheelchair accessible bungalow. This property was perfect for a single, fairly fit and healthy paraplegic, or part time wheelchair user, but no way met the specialised needs of my husband. The living area was so small by the time you had a small couch in the room there would be no room for a wheelchair, tables etc. There was nowhere to sit the care-workers. The very small kitchen totally inaccessible. The master bedroom was nearly big enough but not quite big enough. The wet room was huge but there were no separate washing facilities for care workers. Storage space was inadequate. The over looked on all sides, garden had open iron work fencing that provided absolutely no privacy what so ever.
Having looked at list after list it is quite obvious that Peterborough does not have any specialised housing stock for disabled people who have such substantial needs that they have care workers on site for much of the day.

What have we done to try and help ourselves.

Back in Oct 2012, I wrote to the housing team to try and get a more specific targeted approach to our housing need, but to no avail.
Having been in Peterborough since 2009, we have suffered huge problems with getting appropriate care provision that has meant I have been unable to work. Our family state that the hour plus each way to visit is too far to come to help us out a bit. We then decided to try moving to Spalding, where I could just about manage to commute into London if I had to and our relatives would be a stone’s throw away should we need the extra support. 2014 we were accepted onto this register, but by 2015 due to the Localisation Act we are deemed to have insufficient local connections, our family living in the Lincolnshire district one over. We appealed but lost.
Late 2014 I met the team at Partners Foundation, a not for profit Housing Association, who said they would try and help us move. They would buy a suitable bungalow, help us apply for a DFG. We are at the moment bogged down in local authority red tape, trying to make this happen. Again Council paid Housing OT’s are making our lives difficult by taking the councils part on cost with absolutely no regard to the clients actual need. There is a definite conflict of interest here that groups trying to secure better housing for disabled persons need to discuss.  
·         No cognisance taken of full time care-worker needs, such as office space, washing space.
·         No cognisance of care-workers’ health and safety, safe working environment.
·         Nothing for the family carers either, e.g. I need a bath as I have a lower back injury, that responds to muscle soaks.
·         People living on top of each other 24/7 need time out spaces. I used to play the guitar and paint can’t do any of this no-where to do it.
·         Adequate storage, equipment recharging points.
·         Been told I cannot have a hospital at home environment even though that is exactly what is needed in ours and many continuing care cases.

A Home Design that would meet our needs. see full details at

Master Bed
Wet Room
4m x 4m
2.5m x 2.5m
Hygiene Rm
4m x 4m
1.6 m x 1.5m
Under-stairs Store/utility
2.5m x 1.5
4.1m x 4m


Master Bedroom – minimum working space needed is 4m x 4m to take account of Working space needed around the hospital bed, plus room for a single bed for spouse to do caring duties at the weekend. Adequate manoeuvre room for long leg length electric wheelchair, e.g. Husband chair needs 1.65m reversing clearance to turn to miss his toes.
Wet Room – again minimum working space 2.5m x 2.5m although ideally it would be bigger to take the use of a shower trolley more easy.
Hygiene Room – a separate washing facility for care workers, visiting health workers, other visitors. People with long term conditions are often immune suppressed or susceptible to cross infection. Husband for example has bouts of explosive diarrhoea caused by C-diff. It seems a difficult concept to get across to housing officials that people with long term conditions their homes are not just a home but also a place of work for their care workers.
Lounge – many home designs I have seen for wheelchair accessible properties make this room too narrow to accommodate larger electric chairs, plus have room for adequate seating for others using the property.
Conservatory – this would be seen as a luxury by many, but this multi-purpose space would be an immeasurable life quality enhancing space for us. It would allow adequate space for dining, the use of a tilt table, space for carrying out physiotherapy, sheltered semi outside space when Husband is bed bound for mental health. Time out space to get away from care workers.
The Eaves – this flexible space could be configured to house in our case the spouse’s week day bedroom, give the possibility longer term of a live in care-worker’s bedroom. It also gives the spouse in our case a place to escape. Another small shower room would also be needed. So two bedrooms plus a bathroom or two ensuite bedroom / bathrooms.
The design could be adapted to meet people’s needs very easily. Its open plan design is wheelchair friendly and modern. Windows could also be configured to make it possible to make the design a part of a semi-detached.
I would also contend that until non-conventional building systems are explored, such as USA type buildings, kit homes, wood frame houses, homes will not be built in sufficient numbers and quick enough to make a significant difference to disabled people. These modern building techniques have the added bonus of being very eco-friendly, warm, adaptable from a base plan, quick to build. The use of solar power to cut disabled peoples utility bills is also an absolute must. For example, my husband has no body temperature control so our heating bills are horrendously high. Please note I am skipping writing about the “normal” adjustments, such as accessible wash basins, wheelchair height light switches etc. Too much detail.
Technology is very under used in British homes, disabled people are still struggling trying to use old fashioned key locks, door handles etc. In the kitchen there are moveable height units available but they are out of the price reach of most. My husband would love to have a robot monitoring his well- being most of the day, with care workers just appearing when needed, as he finds their constant presence an intrusion, especially in light of unfortunately the poor quality / fit of person provided.

Consequences to us of bad housing.

·         I have been manually lifting 6ft husband from bed to chair (vice versa), as no space to use a hoist. I now have serious deterioration in my lower back which may eventually mean that I will end up using a wheelchair myself.
·         I have extremely painful knees and reoccurring pains in my wrists.
·         I have been covering the refusal of care companies to work here due to the H&S risks, for the last 2 years, 24/7 with absolutely no breaks. I get 3 hours sleep on a good night.
·         Indirectly it has contributed to me losing out on over £300k in earning potential since 2009.
·         Not being able to work has cost the council in housing benefit.
·         Husband often becomes very depressed about his situation, does not understand why the NHS would bother saving his life when he wasn’t going to be looked after.
·         Husband is angry that he paid into the system working for over 45 years only to turn around and find the system he paid for does not want to know or help him.
·         But no one sees the urgency of our case.

please sign epetition re lack of disability accessible housing in

Saturday, 26 September 2015

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.

Wednesday, 11 February 2015

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.

Tuesday, 1 July 2014

Disability Facilities Grant – discriminated against yet again.


Many readers will have followed our struggles to find a wheelchair accessible home in Spalding Lincolnshire. So just to recap, we have tried to help ourselves by:-
  1.  Private rental but nothing out there ready to move into, and landlords will not give you a long enough tenancy to apply for the grants for alterations needed.
  2. We are currently on SHDC s waiting list, but again they do not have suitable properties on their books, and they are about to change the rules so that our local connections will not be local enough anymore. We currently have the maximum points for a medical grounds move.
  3.  We are on numerous housing charities waiting lists, but they do not have properties in Spalding where we want to live.
  4. We spoke with the organisations that report to help the disabled with specialist mortgages, but because I am of working age, likely to return to work, not disabled myself, they will not help us.
  5.  Have tried to educate and make local politicians aware that the system is not working for the poorest, most disabled in society.
  6. We found an organisation, MIVA Partnership that are trying to help us, but once they get this latest news I think they will run for the hills. They proposed buying a place for us to adapt and rent off them long term. Their biggest struggle is getting the necessary finance so that they can make the standard buy to let return ratio of 8%.

Two weeks ago we thought we had found an ideal property to alter for Hubby’s needs. Just so you know we are not looking at palaces it was at the £120k mark. Our contact told us to start the ball rolling for the Disability Facility Grant as the property would need some substantial alterations to make it suitable for partially tetraplegic (paralysis in all four limbs) Hubby, me and our care team. Our contact in the housing team at SHDC sent a referral for us to the Lincolnshire County Council OT’s based in Lincoln.
Today I had a very depressing conversation with one of the OT’s where it has become very apparent that we do not stand a snow ball in hells chance of getting any financial help, not because we do not qualify but because the procedures in place are so rigid that they discriminate against the most disabled and poorest in society.

Why do I say that ?

1.       I was told , the whole grant procedure can take 5-8 months to release the monies, meanwhile you would have to live in the property.

                        WE can not do that, I would be putting my Hubby in physical danger if I did that. He can not go 5-8 months without having a shower, not being able to gain access via ramps to the property, not being able to access several rooms due to door sizes, etc. Also he is not well enough to live on a building site. I also have to consider the Health and Safety of our care team and myself come to that. Working in confined badly designed spaces is an accident waiting to happen. I am in constant pain at the moment because my back is close to giving out on me, due to all the manual lifting I have to do, in our currently badly designed space.

2.       What private landlord is going wait 5-8 months before he gets his monthly rent ?


So it looks like to me , that unless you own your own home, and are therefore not the poorest in society, there is no help for you to ensure that you live in a safe, and accessible home.

In Summary.


Most people when we tell them what has happened to us, can not believe that in BRITAIN today we do not look after our most vulnerable, what does that say about the society we live in.

Please RT this, copy it, spread the word, people need to know the present system is not helping the most needy in society.

Wednesday, 9 April 2014

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.


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. 

Wednesday, 29 January 2014

Housing and Care a User’s Perspective.


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.


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.


Monday, 4 November 2013

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)