Jaki's story

Pick's Disease

In the following story Jaki tells us about the difficulties she faced when her husband was diagnosed with Picks Disease. Pick's disease is a form of dementia. It causes a gradual deterioration of social skills and also affects intellect, memory and language. Symptoms can vary greatly but common symptoms include loss of memory, difficulty in concentraing and disturbances of speech. The diseaese mainly affects individuals between 40 and 60 and the cause is unknown.

My Story

''My husband David was diagnosed in April 2003 with Picks disease. At the time of diagnosis he was 51 and had a very successful career as a Tax Consultant. Like many fellow carers, when I faced David's devastating diagnosis I was under the totally misguided opinion that I would be able to get all the help I needed to care for him. It is my considered opinion that the help and assistance available is a postcode lottery. How naive one is at the start and how quickly you hear the words ''there is no funding for ...''

Direct and Indirect Payments

When I was given a leaflet on Direct Payments by my social worker I thought this would be the answer to our problems. I have continued to work full time and remain adamant that I will try and fit my working day around caring for David. Direct Payments would provide me with the independence to employ my own carers for the hours that would enable me to continue to work and to enable David to remain at home for as long as possible.

I contacted the local administrative centre for Direct Payments only to be told that I would not qualify. All county councils interpret the rules for qualification for Direct Payments differently. In West Sussex I was told:

''Technically there is no discretion if the client is eligible and opts for DPs: the LA would be obliged to make the payments. There is an area of discretion about how the 'willing to receive' criterion is interpreted: that is, about the degree of mental capacity that is regarded as adequate to validate the client's consent to receive DPs.
This is in part a matter of professional judgement, although the guidance is that capacity consent should be assumed unless there is evidence otherwise.''

However, I'm not sure that any such discretion applies in David's situation, as it seems to be recognised by everyone that he doesn't have the capacity to consent, however liberally the rules are interpreted.

The fact that I hold Enduring Power of Attorney did not make any difference and to me, their interpretation was not logical. In order for us to receive Direct Payments they would have to be called Indirect Payments and West Sussex do not fund Indirect Payments. My contact at the Direct payments office was sympathetic and wanted to see the introduction of Indirect Payments but the decision was not his.

Taking further action

Two things made me prepare to challenge the decision.

Firstly, I read with great interest the landmark ruling Barbara Pointon won (printed on the Alzheimer's web site). Whilst reading her account I saw that she had received Direct Payments.

Secondly, on a Pick's Disease Support Group (PDSG) outing to Lille I spoke to other carers who were also receiving Direct Payments.

I realised that the help one receives bears no relationship to the classification of the illness and is purely the decision of individual social services. One County Council disregards what is treated sympathetically by a different CC. In my area there is little or no funding for mental disease and absolutely no facilities for younger people with dementia.

I decided I was not prepared to accept what I considered to be irrational decisions contacted my local MP (Nicholas Soames), the District County Councillor, the County Director of Social Services, and the Local Manager of Social Services. I also enlisted the support of the Chairman of my local Carers UK Group. The latter proved to be the turning point as he took on my case and had the ear of various County Councillors who were concerned at the lack of resources for carers.

I then entered into protracted letter writing and kept reminding the ''powers that be'' that I was still out there knocking on doors and was not prepared to go quietly. I am told that the door was already ajar and what was needed was for someone to push it open. Finally it was agreed that West Sussex would fund Indirect Payments to 6 families in the county as test cases.

We have all experienced how slowly the wheels grind when asking for funding and to date I have not received any money, I have finally met my Project Officer who will advise and guide me through the process involved in employing carers and all that is entailed. Although I am used to employing, producing contracts of employment and running a payroll, I have decided to accept all the help on offer. I need to make things as easy as possible for myself and hopefully for others coming after me. I am assured that I will eventually receive some money and it will be back-dated to the end of May.

Caring for David

During the time that I have been fighting my case David went missing for a day and this involved a full-scale police search. Unfortunately he continues to deteriorate quite rapidly. I have therefore had to employ carers to help me and I have to fund this myself. Approval based on his 'non-residential services implementation plan' has been granted for 18 hours per week and four weeks respite per year. This is now six months out of date and totally inadequate given his current status. I now face another application for more funding which will probably take another 6 months to agree by which time this too will be inadequate.

What frustrates me is that the system cannot cope with a rapidly deteriorating dementia. The decision-making processes are so slow that they do not keep pace with the rate of deterioration. All my working life I have had to be proactive and the caring system is reactive. There is little or no forward planning for what is inevitable and certainly no long term planning. We now have an appointment with a funded nursing care assessor who has to access David's nursing needs. As David attends an assessment centre at the local hospital with 6 weekly reviews, it amazes me that we need so many assessments; this strikes me as showing a lack of communication between the different departments.

What is desperately needed is some continuity of care, so that when the patient passes from the umbrella of social services into continuing care the transition is effected smoothly and effectively, with the minimum of stress for the carer. Carer stress has been well documented but I would like to say that it is all too easy to get swept along by ones desire to do the best for ones partner. In 8 years I did not have one day's sickness. In the last year I have been hospitalised twice for major infections. The most recent incident has really made me stop and think and realise that no matter how much I want to take care of David at home, the toll it is exacting it becoming excessive. I was also amazed by how fast social services can react when faced with a crisis!

Finally I would like to say that if you really feel very strongly about an issue it is certainly worth having a go at getting the necessary changes to policies.

Update 12.11.04

I would like to add that the Indirect Payments are now up and running and the money was back dated to 21 May. I have found the Direct Payment team to be exceptionally helpful and very keen to make the pilot scheme work. Any glitches have been dealt with quickly and efficiently. I have also applied for and been given another 12 hours to pay for a carer. I have found that the scheme gives so much flexibilty (if you can find the carers).

Unfortunately Davids deterioration continues and I am currently in the process of trying to find a care home suitable for a 53 year old. This has involved a countrywide search. I am hopeful that he will be going to a specialist home for Picks sufferers with an average age of 50!