INTRODUCTION

I have Motor Neuron Disease. I was diagnosed in 2001 and was told by Social Services that I would have to fund my own care as my savings exceed £16,000. I live alone and by the end of 2002 I had been obliged to spend a large portion of my savings on alterations to my home to allow me to move around it easily in my wheelchair. By spring 2003 my care needs were increasing and I became worried about it.

In March 2003 I was shown an article in the Daily Mail, which stated that many people who are living with a disabling illness are erroneously being told that they must pay for the non medical [i.e. not requiring a qualified nurse] personal care necessitated by their condition. It also gave examples, such as Alzeimers, and gave some web addresses for guidance.

I read the information on the web sites, the Health Ombudsman's report on the subject and the Welsh N.H.S. site. This confirmed to me, that I met the criteria for what they call 'Continuing Care'. The advice I had obtained indicated that if one's initial application is refused, one should appeal. If the appeal is refused, one should write to the Health Ombudsman.

So I wrote to the local health authority [LHA] detailing my situation and claiming payment for my care by the N.H.S. The LHA replied and further correspondence ensued.

Two months after my first letter a senior nurse came to see me. She expressed grave doubts as to my eligibility under existing criteria and I replied that the existing criteria are not in accordance with current law. Two months later I was asked to spend a week in the local community hospital in order that my care needs could be assessed.

At the end of the week a meeting was held which was attended by all interested parties. These included a doctor, nursing sister and physiotherapist, who had each been involved in my assessment, my social worker, my occupational therapist and a senior nurse responsible for funding. At that meeting I was told that it was unlikely that I would be granted NHS funding, and I stated that I was determined to take my case further if necessary.

A few weeks later I was unofficially informed that the committee had deferred judgement on my application. My condition had, by then, deteriorated such that I could not even feed myself. So I wrote to the area health authority asking them for the courtesy of a written explanation of the situation and I sent a copy of that letter to the minister for health in the Welsh Assembly. She also happens to be my constituency assembly member. My covering letter to her quoted precedence for my claim and requested her help.

A few weeks later I was notified by telephone that my claim had been approved and arranging a home visit to discuss details. At that meeting I was informed that my costs for personal care, carried out by my care agency in my own home, would be paid for by the NHS and backdated to May 2003.

I subsequently wrote enclosing details of paid invoices and requesting written confirmation of the approval. I then received a letter stating that my package of care from the agency had been approved. My full and increasing care package is now being paid for by the NHS [although it is now 2004 and there has been no back payment yet!].

WEBB SITES

www.nhscare.info

www.ombudsman.org.uk

SAMPLE LETTERS

Sample 1.

The Chief Executive,

Local Health Board,

Ref: [N.I. Number]

Dear Sir/Madam,

I understand from the recent Health Ombudsman's report that some people have been wrongly funding their care. I believe that I qualify for fully funded NHS care.

I was finally diagnosed as having at Hospital on [date] after [x] months of investigations. I was not informed of any NHS assessment procedures for my continuing care needs then, nor at subsequent hospital visits as my condition worsened.

[INSERT OWN HISTORY HERE IF REQUIRED][e.g. - It was only when I applied for a parking permit that I was advised to apply for DSS Disability Living Allowance. I subsequently received Mobility Allowance from the [DATE] and Middle Rate Care Allowance from [DATE], which was increased to Higher Rate Care Allowance from [DATE]. I was appointed a social worker in [YEAR] who informed me that I would have to pay for my care as I had savings in excess of £16000.]

I live alone/[with----] and have been cared for in my home (address above) with increasing help from nursing carers, since [DATE]. [PRESENT CONDITION][e.g.:- I currently am unable to get into or out of bed, wash, dress or prepare food for myself and am wheelchair bound]. The cost of my care, at present, is approximately £xxx per week not including the extra cost of electricity required to operate the numerous gadgets I need and the regular outlay for the many essential items relating to my care. I have also had to pay for extensive alterations to my small bungalow to enable me to function in it via an electric wheelchair. Since my illness is a terminal, degenerative illness, my care needs are increasing with time.]

I consider that the NHS should pay these costs. I also think that the Local Council should be reimbursed with the cost of equipment they have provided, such as a pneumatic bed raiser; a hoist and many smaller items.

I therefore request a review of my situation and a formal assessment in accordance with the Coughlan criteria laid down in court and the subsequent Ministry confirmation in circular HSC 2001/17: LAC (2001)26 of 25th September. I would also refer your attention the NHS Ombudsman's current report on these matters.

As admitted by the Health Authority in court at the "Coughlan hearing" quote "If you have health needs or disabilities you are 100% the financial responsibility of the Health Service even if no treatment at all is possible. However, nursing at law is the dictionary definition, 'treating the sick'. Only help with housework, shopping, cooking and similar tasks can lawfully be described as 'social care'". Also the Health Service Ombudsman wrote in his report on National Health Service funding for long term care for older and disabled people (Annex A) "the setting of the care should not be the sole or main determinant of eligibility. Continuing NHS health care does not have to be provided in an NHS hospital and could be provided in a nursing home, hospice or the individual's own home."

There are precedents for this. For example, I have been informed that other Health Authorities have organised a system where patients living at home alone with a disabling illness can receive 24 hour care from National Health Service employed nursing carers (not qualified nurses) working on an eight hour shift basis.

My NHS number is xxxxxx. My date of birth is [DATE].

I have copied the correspondence relating to my claim to my Assembly Member/MP/Health Minister for his/her information.

Yours faithfully

Sample 2.

AM/MP/Health Minister

Dear Sir/Madam

Continuing Care

I enclose copies of correspondence between myself and the Local Health Authority for your information, which is self-explanatory.

Considering the nature of my illness I feel that [x] months is rather a long time to wait for a decision on my request for assessment. Indeed, as indicated in my original letter of the [DATE] precedent has already been set in England relating to the correct interpretation of the Law, (circular HSC2001/17:LAC (2001) 26 refers).

As admitted by the Health Authority in court at the "Coughlan hearing" quote "If you have health needs or disabilities you are 100% the financial responsibility of the Health Service even if no treatment at all is possible. However, nursing at law is the dictionary definition, 'treating the sick'. Only help with housework, shopping, cooking and similar tasks can lawfully be described as 'social care'". Also the Health Service Ombudsman wrote in his report on National Health Service funding for long term care for older and disabled people (Annex A) "the setting of the care should not be the sole or main determinant of eligibility. Continuing NHS health care does not have to be provided in an NHS hospital and could be provided in a nursing home, hospice or the individual's own home."

As pointed out to the Health Authority in my enclosed letter dated the [DATE], other Health Authorities have already taken these recommendations on board.

Yours sincerely