Care in Crisis my take on things.

A Personal Critique of the Care Industry in the UK.

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

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

Assessment of Clients.

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

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

Fixing The Quality of Care-Workers.

Stage1: Recruitment.

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

Stage 2: Training.

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

Stage 3: Career Progression.

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

Summary & Conclusion.

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

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

Angela Cavill-Burch (MBA NEBOSH MIRO)

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

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

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

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

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

Out and About.

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

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

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

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

Lessons to learn:

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

Access to Leisure Facilities.

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

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

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

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

Lessons to learn:

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

Access to Medical facilities.

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

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

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

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

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

Lessons to learn:

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

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

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

Access to Housing.

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

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

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

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

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

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

Lessons to learn:

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

City Planners:

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

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

Housing Standards Review - My thoughts

Dear Committee,

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

Scope:

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

What is wrong with the current system.

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

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

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

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

The decision your committee makes will have real life effects.

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

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

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

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

Commission on Residential Care - call for evidence

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

Introduction.

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

Firstly to answer the specific questions posed by the commission.

The Questions.

1.       How do you define residential care?

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

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

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

b.      What makes them different?

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

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

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

3.       Can existing residential care deliver these outcomes?

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

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

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

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

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

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

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

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

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

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

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

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

·         Where specialised end of life care is needed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In summary.

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

1)      My Severely Learning Disabled Brother.

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

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

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

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

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

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

Wheelchair Accessible UKHousing

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

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

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

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

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

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

  

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

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

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

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

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

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

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

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

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

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

Disability & Caring : Lots going on lately personally & politically

Lots in the news affecting those who care for the disabled, recently. Very easy to get very depressed with the constant stream of ill thought out comments and policies coming from the government. One light in the gloom was the debate in parliament about the daily struggles of family carers. The ministers that spoke seemed to "get it" , but I seriously doubt whether the kind words and recognition will turn into concrete policies and finances to help those in such a position. They talked of making sure respite was made available for carers, this is very important but with competing demands on council budgets likely to get squeezed out, yet again. I for one have been told that if I am able to get back to work , even though I will look after my Husband at weekends solo my allocated respite will have to be used to cover any out of course work shifts, I do not think the politicians had that in mind when they coined the term "RESPITE" .

Benefits & Support :
I am glad to see that government is having another consultation regarding the new 20m rule for proving whether you are able to walk unaided or not, being the ruling factor as to whether you will be able to get access to the mobility scheme or not. Now whether they will listen or not is another story. Does not directly affect us as Hubby is totally immobile. The bedroom tax saga rolls on with , ill considered comments by Lord Freud in a letter he has written to local councils regarding redesignation of rooms as not bedrooms and the charges for rent there after, made me extremely angry as it will indirectly make the building and redesigning of homes for the disabled financial suicide for Housing Associations. More thoughts later re housing.

We now have one good care worker allocated to us, still very slow process finding the others we need, but I guess we will get there. No doubt there will be some last minute crisis management, NHS good at that, when I get a new job.

Our Fresh Wheelchair Accessible Vehicle:
What a disappointment, our second hand Kia WAV Evolution has been. Has cost us a lot of money in replacing the fuel pump, now the reversing sensors have gone. We bought a "Dog" as my Hubby would say. For those thinking of buying such a vehicle by the way, yes loading / unloading is space efficient, but not easy as you end up crawling all over the wheelchair users to connect all the restraining straps. Once the user is in place you can not open the passenger door to get to the left hand side of the user, which is a pain in the neck. The front straps never get tight enough to be totally safe as they have to be fed around the wheelchair sides from the anchor point because going in a straight line would mean them flipping up users footplates, hitting their legs or  feet. Oh and being a diesel, yuk! noisy, non responsive piece of crap.We have nick named it chugger. I would personally recommend a side loading up front passenger, like that of the Chrysler Voyager as being a better but of course more expensive option. As soon as I am back at work we will be looking to get rid.

Housing:
We are still stuck in our unadapted first floor flat unable to convince anyone who can do something for us that it is totally unacceptable. To recap, we have a wet room that is so small Hubby gets his feet regularly banged on the toilet when sat in his commode. None of the doors have been widened. We have carpets which are a total pain for wheeled conveyances. A lift the only access, that is too small carer plus user can not easily travel together in. Also too small for ambulance trolley. The building construction is such that no ceiling / wall hoist can be fitted. The rooms are too small for use of an electric wheelchair plus have any furniture, the bedroom likewise and care-workers can not access all around the bed, to use sliding sheets etc. We have no where to put the vital for his long term health tilt table that he needs. When back at work I will find a corner in the room we use for storage, as none is provided by the HA. Our flat is positioned right over the badly supervised bin room, where during the hot weather, we get the smells & flies it produces. Our next door neighbour is a heavy smoker and we have the pleasure of breathing in her second hand smoke all day, even though OH already has breathing problems and I have a history of bronchitis. The kitchen is totally inaccessible. The flat is dark contributing to OHs vitamin D deficiency and his danger of breaking bones.This leads to poor old OH being strategically placed in a spot in the front room in front of the telly, as moving anywhere else in the flat is a logistical nightmare. What a way to treat our disabled. So I follow with great interest the debates at the Housing 2013 this week on twitter. Some how we have to get the local authorities to wake up and build more wheelchair accessible bungalows. If it means building in US style timber framed buildings so they can be bigger without costing more then so be it. I would love to live in an american style home, they are warm, cosy, open plan, accessible and fit for purpose.  http://floorplanner.com/projects/26022765-new-floorplan/edit#assets










  

My Story - Updated.

My story in brief

I have been a carer for most of my life. I was born into a household in crisis. On the day I was born, Father was recovering in hospital from TB, my eldest brother of 2 fighting for his life with TB Meningitis. Father recovered, but we had to move home as our lovely cottage in the Quantock village of Holford, Somerset had to be fumigated. 

Mother struggled for the next 5 years with the help of her little helper, me, to keep the now severely mentally handicapped brother at home. One of my first memories at age 3, is of bathing my brother with turds floating in the water where he had messed himself. After our youngest sister was born in 1972 Mother made the painful decision that that she could not cope with looking after three children under the age of six, plus  l that was so ill. Eldest brother was taken into specialist care. The birth of her forth child was very complicated, she died on the delivery table at one point and soon after returning home it was obvious that she was having some sort of mental breakdown, the stress of seeing her eldest son depart from the house and the birth took its toll. Mother then spent most of my childhood in and out of mental hospitals, had inhumane amounts of ECT treatment , had her not inconsiderable intellect dulled by various psychedelic colourfully named drugs.This left me and my father to cope at home with the other two kids. I learnt how to cook from a very early age, wash, clean and all the other household stuff for the family to get by, while Dad concentrated on bringing home the family income such as it was.By the way just because eldest brother was not at home he was not forgotten and had regular visits from all of us, still a big part of our dysfunctional family.

As I entered my late teens I found the duties and expectations at home suffocating so left home at 17 to save my own sanity. I spent the next 20 years of my life building up a portfolio of educational certificates and work experience. When I worked it was in safety, project & engineering management. The highlight of which, 2004-06 reconstruction work in war torn Iraq, caring on another scale all together. 

June 2007, over the space of a few terrible days mine and my husband’s lives were torn to shreds, he became ill with a Staph infection that left him partially tetraplegic. Concurrently finding cancer on his right kidney. The remainder of that year was spent in various hospitals, me living like a hobo and him fighting for his life.

2008 we decide to try and resume our plans heading off to Australia, but by May 2009, a pressure sore caused by a spider bite and Hubby’s deteriorating health mean that we have to make the hard decision to return to the UK.

Back in the UK, homeless, penny-less and  somewhat surprised that looking after a Tetraplegic in a hotel is not considered an urgent situation. The real battles begin with a UK health system that is not geared up to help when you don’t neatly fit into one of their boxes. Hubby couldn’t be just a run of the mill tetraplegic he had to have complications with taking oral medications, none helping with his progressive, aggressive, spasticity and spasms.

Even though Hubby qualified for fully funded continuous care agency provision in October 2009, I am now looking after Hubby 24/7 day in day out. He does not sleep at night and therefore neither do I. His inability to tolerate hoist use, constant physio demands, forcibly straightening his limbs to relieve the pain of muscles that seem to be trying to rip his body apart mean looking after him is a very physical job.

I became so desperate at no one listening or taking action regarding our plight that in July 2010 I take the drastic action of going on a hunger strike, which got national media coverage and the local PCT did start to help a little. Since then we have had sporadic carer coverage, but most of the time I am still my husband’s 24/7 carer, still here, battling a system that does not want to listen or act to ease both our suffering. 

During this time being housebound I have kept sane by developing my social media skills, trying to get help for myself but also trying to support others in similar situations.

Since writing my story in brief in October 2011, I have lost my father to cancer May 2012. Again the local services let us down, I begged for 4 months for respite cover so i could go visit him, nothing doing. So I missed my own father's funeral, thats what it is like in the UK today. 

Today as I write things are slightly better we working with a new care company and they have managed to supply one good carer which means i can slip away for a bit during the day, with the promise of more soon to make a team, meaning I can now look for work with some confidence that OH will be looked after at home.