Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 

• social care provision, costs, funding options, where to be provided, type of care.
• NHS Continuing care worker provision, how much, how many, where etc.
• Is a Care / Nursing Home appropriate.
• How far away would housing, care home be away from rest of family
• Is current Housing fit for purpose.
• How much should the GP be involved over and above the norm.
• Are there any other agencies involved.  
• Does the Client have all benefits entitled to.
• Is there a need for on going physiotherapy.
• Is there a need for supplies of equipment and consumables 
• Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.

Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  

Funding

I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 

• Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
• Provided with totally unsuitable care agencies for Hubby's complex needs.
• Care workers provided have not been vetted sufficiently.
• No cognisance taken of the risks to my health as his carer.
• GPs not pro-active in ensuring health and well being.
• We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
• We have had various ups and downs getting Hubby appropriate medical care.
• Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
• My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
• My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.

Accessible Housing: Back Home, but isn't our home.

We returned "home" on the 20th September, 3 months to the day that Hubby was admitted to hospital. I put "home" in inverted commas as we have never made this place our home. It is the place where we sleep, eat, the place, the authorities have hidden us away in the community, so that they can forget we exist. My usual mantra, Care in the Community = no Care at all.

I have resumed my search for accessible housing. The council list never seems to have anything suitable, the rooms are always too small to accommodate safely the equipment we need to use. We return to the stench of cigarette smoke from our neighbour which has permeated into all our fabrics in our flat. The Liaison Nurse from Stanmore, visited  last week and tells me her clothes stank of it on her return home. I wonder what is that doing to Hubby's already fragile breathing, and also to me the daughter of father who has recently died of lung cancer. The Housing Association has put a lemon fragrance air freshener in the hall way, but it doesn't eat the toxic smoke that is infecting and assaulting our lungs. Hubby has been trying to shelter his fragile back by using his electric chair even though it is very uncomfortable. We tried to use the new manual one supplied by the NHS but it is too big to use in our tiny 2 bed first floor flat. The bedroom door was the worse obstacle as it only just squeezed through. So it has been stuffed in the bathroom with the hoist we rarely use because of lack of space and carpets.

Hubby has now hurt his right ankle banging into the many barriers to his progress in this flat. 

So rather than fester on all of this I write a letter to the council setting out why they need to move us to more suitable accessible accommodation . Not heard anything from them yet which either means the letter has gone in the bin or maybe someone might review our case again and help us find somewhere more suitable. 

There is another dimension to our unsuitable living arrangements in that looking after Hubby using careworkers is near impossible as they don't have access all around his bed to use sliding sheets and the like. Using a hoist will also be difficult for them as well, because of the lack of space and the carpets.

This causes a vicious circle as without careworkers I can not get back to work to stand a chance of providing a suitable home for ourselves. This is downward spiral that the politicians don't seem to understand, it takes someone giving you a break in one area to ease up a lot of the other challenges. 

Our case highlights again the need for integrated services for the disabled. Medical Need+Housing+On going Care.  

Getting back to politicians, I was very dismayed to read about proposals to stop housing benefit to the under 25. I write here my own example of how having the right to this as a 17 year old, helped me get away from a dysfunctional family life, started my career and saved my sanity.

I tried to stay on in the sixth form at school , but found out that due to my family caring duties, the strain of studying for my O'Levels I was burnt out and could not devote enough energy to my studies. I therefore made the decision to look for a job, which I was very lucky to get as an entry clerical post in the civil service in a benefit office in a town 20 miles away. To grown up readers with cars that does not sound a long way away, but to me that meant getting up at the crack of dawn travelling by train to start work at 8am. The train fare was extremely expensive, so I used to cycle to work as many times a week as I could, but soon realised that although I loved cycling it was not conducive to arriving at work fresh and ready for a days work. By the time I had paid my fares, food at work and given most of the rest over to my struggling family, I had very little to show for my efforts. I then decided that for my own health and well being I had to make a break of it and live in the town where I worked. I saved up enough for a deposit and with the help of my future husband moved to a bedsit in the town, just up the road from Margaret Thatchers fathers shop in Grantham. I had housing benefit help with the rent, but £60 per week civil service pay didn't go very far after paying  utilities, so I usually survived on £15-20 (we are talking of the late 1980's) for food plus extra vegetables my hubby gave me. Even though money was very tight I was free from my dysfunctional family dragging me down, free to get my head around what I was going to do for the rest of my life.  

M.P. Tebbitt told the youth of my time to stop whining and get on your bikes, so I got onmybiketoo .

So I beg politicians of today heed my story , do not stop the mobility of our under 25's they need more than ever today to leave their homes to find work, Housing Benefit will be an enabler for them to do this.