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 

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)

An Idea - Carers Virtual National Strike

Introduction

Every year Carers continue to be ignored by subsequent governments and other authorities. Carer charities try and represent the interests of Carers but have in the eyes of many Carers have failed to really get the message across to those in power. This paper sets out an idea to really highlight in a new and bold way the real value of Carers in society, what this diverse group adds to the UK economy and the very fabric of what makes society hang together in a cohesive way. This campaign will dramatically bring home to ”Jo Public” and those in power that Carers should not be ignored, they should be cherished and  looked after.

Problem Statement

Why are Carers problems ignored and why are they taken advantage of by society?

·        They are a diverse group with many different priorities and agendas.

·        They do not go on strike because it would harm their Caree.

·        Which means it is easy for them to be ignored due to a lack of economic / political power.

·        They do what they do out of love or sense of duty for their Caree.

·        They feel obliged by society and or peer pressure to care.

·        Many are hidden away at home and do not shout about the fact they are a Carer.

·        Some Care around the clock and are unable to leave home to demonstrate.

So how can we bring home to the nation what life would be like if we Carers were not here?

The Idea 

The idea is to conduct a “virtual” Carers strike for a week. Using student film makers to co-ordinate the story flow, and real Carers input to specially set up You Tube, Facebook, Twitter pages and the media. Create a partially interactive film documentary that highlights day to day how the fabric of UK society would break down without the daily interventions carried out by the nation’s 6 Million Carers. The 7 daily films would be in the format of various news stories documenting the growing chaos at our police stations, fire brigades, NHS Hospitals, nursing homes, care homes, social services,  health authorities, coroners, funeral parlors etc. It would use statisticians / researchers to ramp up the projected death toll / serious injuries and cost to the UK plc.

For maximum impact permission needs to be gained for the film series to be shown in the houses of parliament, local shopping centres, GP’s surgeries, hospitals and other public places. Charity personnel and volunteers need to be available at these locations to explain the campaign, selling Strike packs with T-shirts (I AM A CARER,  I AM ON VIRTUAL STRIKE  or I SUPPORT THE CARERS’ VIRTUAL STRIKE) , window posters, and a leaflet explaining the action. Hopefully the national media would help as well. 

Summary Report, Impact Statement.

Finally a report needs to be pulled together that details what would have happened if the strike had happened for real, mounting death toll, over stretched local resources, cost to the UK economy, hospital closures, over full care / nursing homes, detailing the story over the 7 days. This needs to be sent to all MP’s and members of the House of Lords with a list of Carer demands.

·        The formation of a Carers bill of rights.

·        The right to a fair remuneration for the work they perform.

·        The right to have respite.

·        The right to not have to work unsupported for 24 hours a day.

·        The right to have a decent night’s sleep.

·        The right to a supportive / flexible / individual centred medical system for themselves and their Caree.

·        The right to have paid, decent quality care-workers sourced to help with caring.

·        The right to opt out of caring so that one can work.

·        The right and where with all to legally challenge Social Services / Health Authorities when they fail to provide adequate services.

·        The right not to be bullied and harassed by authorities.

·        The right to have their human rights preserved and protected.

·        With the Carees permission, the right to be listened to by all regarding the health and well being of their Caree.

·        The right to live in decent suitable housing.

·        The right to have specialist skills learnt during caring nationally recognized in qualifications.

·        The right to special entry requirements / funding for home based distance learning courses.

I could go on ….

I hereby submit this proposal to my readers as a start to get people thinking out of the usual boxes. As a 24/7 Carer myself I can not do this alone. 

So finally I say LETS DO IT AND SOON…… 

Angela Cavill-Burch

http://onmybiketoo.blogspot.co.uk

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