***********LATEST **********
My petition to the 10 Downing Street site has finally been accept and can be signed here
MANY THANKS FOR SUPPORTING THIS
There is a major crisis looming in provision of services to people with disabilities/long term illness in this country and it all stems from the government's recent introduction of the National Framework concerning Continuing Health Care in Oct 2007. Whilst it may have been done with the best intentions, it is dramatically going to affect current Direct Payments users who meet the Continuing Health Care Criteria. It may force them into Residential Care, at great cost to the tax payer. It represents a massive shift in human rights for many people with severe disabilities/long term illness who have good care packages, which they control and enable them to live in the community with their families and loved ones.
In January of this year the Jeremy Vine show covered this very topic on the show concerning the case of Peter Rees in Wales. Please click here for access to Dr. Siaron West's (Mr Ree's wifes blog) which explains the problem in their case and the petition made to 10 Downing Street. Their latest entry made today 8th July 2008 explains the current situation and the stress the family are clearly under.
Lucy my daughter aged 19 who has profound and multiple learning disabilities health has been vastly improved since we removed her from a residential school setting costing the tax payer far more than it does now. She is happy, content and able to live a full life within the confines of her disability. She is the reason I became friends with Jeremy, Terry Walton and the team surrounding the show, when Jeremy expressed an interest in her case many years ago. She has a team of 5 carers who offer excellent care to her in her own home and since last year we have had no hospital admissions and only one call out from the GP. Unlike Peter Rees she already meets the Continuing Health Care criteria, so there is no escape for her! It is like being condemned to state control.
We have no issues with Social Services who like us are at their wits end on what to do about the Directions from the Secretary of State for Health regarding NO Direct Payments for people who meet the Continuing Health Criteria. Last Friday I received a phone call from a Senior Manager out of the blue explaining the situation and how it might affect us we were completely devastated and so is Lucy. I would also like to add that in the case of our Authority Walsall, I do not believe it is lack of co-operation between Social Services and the PCT. The problem lies with directives that are MANDATORY from the Department of Health regarding Continuing Health Care and Direct Payments. Our local Learning Disabilities Team is a shining example of totally jointed funded provision and staff from Social Services & Health working within that team who work extremely hard to do the best for the users. They represent true examples of best practice with creative and good packages of care. We already have a joint funded package funded by Health & Social Services. Social Services and the PCT's have no choice but to follow directives. But if we loose the DP then we loose control and the right to employ Lucy's carers many of whom have been with her for 3 years and our her best friends. Agency care is not the same and we know we will not be able to then meet her needs at home, the likely hood is that after nearly 20 years of fighting for the best for her she will end up in residential care which will cost the taxpayer twice as much as it does now. It is with deep and great sadness that we also believe from the bottom of her hearts this will shorten her life.
The following extract explains what is causing the problem to PCT's taken from the The National Framework for NHS Continuing Healthcare and NHS funded Nursing Care section 77 issued October 2007.
"The National Framework for NHS Continuing Healthcare and NHS funded Nursing Care NHS services cannot be provided as part of an Individual Budget or through Direct Payments, and Our Health, Our Care, Our Say: A New Direction for Community Services makes it clear that these will not be extended to NHS healthcare in the near future. This means that when an individual begins to receive NHS Continuing Healthcare they may experience a loss of control over their care which they had previously exercised through Direct Payments or similar. It should be emphasised that PCTs can commission to maximise continuity of care, i.e. to maintain a similar package of care to that already in place, and in determining whether to maintain an existing package, the PCT should take into account the individuals preferences wherever possible.
(author Social Care Policy & Innovation (System Reform) Quarry House, Quarry Hill, Leeds.) One has to laugh if it wasn't so serious at the complete contradiction in this whole section of the guidance the words Our Health, Our Care Our Say erm?!!!! It also doesn't cover the scenario of people already on CHC receiving a Direct Payment.
Moving on the irony and final contradiction being that in the latest report for the next stage of Health to coincide with the 60th anniversary of the NHS in a press release dated 3rd July 2008 they categorically state in Lord Darzi's report which can be obtained from the Department of Health site's website here that they intend to role out Direct Payments from Health on a pilot scheme by 2010! Clearly the Department of Social Care Policy & Innovation (System Reform) are totally unaware of the next stage plans when they wrote the document. It is important to note here that the National Framework is GUIDANCE/BEST PRACTICE it is not law.
You may well then ask yourself why are they putting families like us and the Ree's through this situation? It is pure fudging of the law from one bit of legislation and guidance to the other that is the only explanation, the left not knowing what the right is doing! There is no reason why the Secretary of State for Health cannot issue a DIRECTIVE/NEW GUIDANCE to all PCT's to commission a Direct Payment through Social Services if it is in the best interests of the patients/users concerned particularly those with existing successful excellent cost effective care packages meeting the needs of the patients. Why fix something if it isn't broke?!!!!
In the NHS 2006 Act it clearly states that the Secretary of State for Health has the power to obtain services from any PERSON or body under section 12.
PLEASE PLEASE SUPPORT THIS CAMPAIGN AND CONTACT YOUR MP BELOW AND ASK HIM TO RAISE THIS WITH THE SECRETARY OF STATE FOR HEALTH.
"THAT THE SECRETARY OF STATE FOR HEALTH RESPECTIVELY CHANGE THE CURRENT DIRECTIVE/GUIDANCE UNDER THE NATIONAL FRAMEWORK FOR CONTINUING HEALTH CARE SECTION 77 TO PCT'S THROUGHOUT ENGLAND AND WALES AND THEREBY EMPOWER THEM TO COMMISSION A DIRECT PAYMENT BY COMMISSIONING THROUGH SOCIAL SERVICES FOR CASES THAT ARE CURRENTLY WORKING WELL IN THE SYSTEM WITH SERVICE PATIENTS/USERS THAT MEET THE CONTINUING HEALTH CARE CRITERIA IF IT IS IT THE BEST INTERESTS OF THE PATIENT AND THEIR WELL BEING."
IT ONLY TAKES A MINUTE VIA THE WEBSITE BELOW
Today I received confirmation from our MP Richard Shepherd that he will raise this question with the Secretary of State for Health and we are very grateful to him for his very quick and speedy response in this matter and his support as I only contacted him via the website above on Friday evening.
I hope that anyone reading this website dedicated to the Jeremy Vine show can help us resolve this legal anomaly and the terrible situations disabled and their carers are in, that meet the Continuing Health Care criteria, who currently receive a Direct Payment, that do not want to be forced to put their loved ones into residential care or rely on agency care.
If you can help or give any further information or advice please contact me on
contact@jezzasexiles.org
Many many thanks to you all for taking the time to read this and I hope that you feel that you can PLEASE PLEASE help us and many other families that are facing this very distressing situation in England & Wales.
Becky (aka BDG) XX
Further Information
The main reason the government have introduced this Continuing Health Care Framework is because they were facing the possibility of billions of pounds in legal suits from people who had been placed in Nursing Homes and then been expected to pay towards the cost or they had been struggling to look after people at home with little or no funding and again facing charges from the Local Authority under Fairer Charging! Many people were fighting to be classified as Continuing Health Care. The underlying principle being that the NHS is free at source.
In 2004 I started working as a Direct Payment Support Worker, following us being the first family with a child to receive Direct Payments in the Walsall area and that Direct Payment has followed us through into adult services and is working very well indeed. The principle of DP met with a lot of resistance in many quarters but we fought and got many people on to DP and supported them through the process. When I started in the job there were 15 people using DP 18 months later when our contract ended there were 150. Many of those were families with severely disabled children who will meet the Continuing Health Care criteria when they move into adult services, there is no doubt about that. The new assessment tool is putting far more people on to CHC.
Direct payments are al about empowering to people and their families with Disabilities/Long term illness they are at the heart of the Independent Living Campaign, many adults with the help of DP are able to live independently having control of their own life's in many cases for the first time. Further information on the campaign and the proposed Independent LIving Bill by Lord Ashley can be found here.
There are precedents where PCT's have commissioned a DP through Social Services and in particular in the very moving case of Michael Pointon in 2004 after Barbara's long and fierce struggle to achieve this. Was all her fighting for nothing? You can read about Michael & Barbara's story here
Now whilst this story highlights how poor the assessment process was and clearly this is what the government has tried to improve with the New Assessment Framework without PCT's having the choice to commission a Direct Payment via Social Services it would have made her situation and fight meaningless because the whole point was that she trained and managed the carer's and gave Michael the best possible care as a result.
For me it is all about giving people that choice, this has always been at the heart of the movement, not to be completely controlled and at the mercy of what the state provides on one's behalf. We don't have a problem with Lucy being classified as CHC as long as she retains the right to employ her own carers who provide her with the best possible care. We get little or no nursing input and we don't need it. Usually the Dr's and Nurses ask us what is best to do anyway!
I would gladly welcome the Secretary of State for Health into our home or anyone else who is in a position to change this ridiculous situation, so that they can see for themselves what high quality and professional care is provided for her.
10th July 2008
Please note I have edited the original information to make the situation clearer or more confusing which ever way you look at it :D
I'd like to thank everyone very much who has contacted me so far and in particular Mike Reynolds for his friendship and support, the other people who have pledged to contact their MP and Steve a new friend who has given me a lot of legal information without whose words of advice I was able to find over the weekend on a forum to do with disability, I really think I would have been in total despair.
I received yesterday from Steve a very long and confusing article written by Professor Luke Clements and Paul Bowen QC. I'd like to quote the following from it which really does sum up the situation :
"The courts have repeatedly shown exasperation with the situation. For example, in Crofton (a patient suing by his father and ligation friend John Crofton) v National Health Service Litigation Authority (2007) EWCA Civ 71, 8 February 2007 at para 111; (2007) 10 CCLR 123 at 148, the Court of Appeal expressed its despair in the following terms:
We cannot conclude this judgement without expressing our dismay at the complexity and labyrinthine nature of the relevant legislation and guidance, as well as (in some respects) its obscurity.
While this level of complexity might be acceptable in the law regulating commercial interest or international relations, it is deeply damaging when it relates to the rights of disabled people. On any measure, the law in this context is acting as profoundly disabling barrier to disabled people's ability to access fundamental rights; in this case the possibility of independent living."