Contents

Editorial - BBC THANKYOU!
Direct Payments - Jaki Brown
Book Review - Carole Ivey
Research Study Participants Request - Bronwyn Parry, Julie Jessop and Anji Wilson
Young People - Volunteers Needed
Contact Details

Editorial

BBC THANKYOU!

Thank you very much to everyone who contacted me for my research into Picks Disease, for the BBC2 series My Family - it was a wonderful response. It has been extremely interesting and helpful to hear people’s experiences and I am so grateful for your time and interest. I have begun to appreciate the unique nature of the disease and how it plays out within the family unit.

As the project got underway though I became increasingly aware that perhaps this current series was not an appropriate one for a subject such as Picks. It is a fascinating area and one that deserves coverage. We hope to continue the research and look into the possibility of another project, with an extended time scale, so that we might do the subject justice. We are still speaking with families and the research continues and I feel strongly that awareness needs to be raised.

So thank you again for everything and I hope it’s appropriate to contact people again when we have other questions.
Best wishes,
Alice Mayhall
Assistant Producer
020 8752 7978
Alice.mayhall@bbc.co.uk


Direct Payments

My husband David was diagnosed in April 2003 with probable Picks. At the time of diagnosis he was 51 and had a very successful career as a Tax Consultant. Like many fellow carers when 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 David. 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 …….”

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.

Two things made me prepare to challenge the decision. First 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.

The second was that on a PDSG outing to Lille I spoke to other carers who were also receiving DP. This was when 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 and fired off letters to my MP (Nicholas Soames), District County Councillor, County Director of Social Services, and 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 it needed was for someone to push the door 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 run a payroll, I have decided to accept all the help on offer. I need to make things as easy as possible for myself and if the test cases are successful, 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.

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 to 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 nursing care assessor who has to assess 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 one’s desire to do the best for one’s 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 is 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. If nothing else it raises the profile of FTD.

Jaki Brown


Book Review

The Selfish Pig’s Guide to Caring

Don’t be put off by the title, which may bring on a laugh, albeit a slightly shame-faced one.
Written in text book format for easy access to facts, this is a page-turner, written in up to the minute English, that plumbs the depths of carers problems with humour, honesty and eye-widening frankness. If only this book could be read by the public at large.

Carole Ivey


Attitudes about organ and tissue donation for research:

Information Sheet
We would like to ask you if you would be willing to take part in a research study. The study is on what people think about donating organs and/or tissue for research purposes. Before you decide whether to take part it is important for you to understand why the research is being done and what it will involve. Please take time to read this information carefully and talk it over with others if you wish.

Why is the study taking place?
New legislation is currently being developed that will determine how human organs and tissues may be collected, stored and used. It is important that those drafting this and future pieces of legislation have access to as much detailed information as possible on people’s attitudes to the donation of their organs and tissues for research purposes. However, at present no such information is available to them, as no formal study of this subject has ever been undertaken in Britain. The aim of this project is to undertake such a study.

Why have I been approached?
We will be interviewing 90 people aged 65 and over in three different locations. We are very keen to talk to people with a wide range of views and experiences and, as such, would value your opinion.

Do I have to take part?
You do not have to take part in this study. It is entirely up to you to decide whether or not you want to. If you agree to take part you can still change your mind and withdraw at any time without giving any reason and any information already gathered would be destroyed.

What will the study involve?
Your interview will take approximately one hour to complete, will be held in a location convenient to you, and a friend or relative can be present should you so wish. During the interview we will ask a range of questions about your attitudes to donation for research. You are not obliged to answer every question in the interview and may stop the interview or withdraw from it altogether at any time should you so wish without the need to give a reason. If you agree, we will tape-record the discussion but at no point would tape-recordings be used at presentations. Prior to the interview we would secure your written consent to be interviewed, a copy of which will be left for your information.

We must stress that the purpose of this study is NOT to secure your agreement to donate (if you have not already agreed), or to in any way influence your views about donation. This is a social scientific study that is simply aimed at eliciting people’s views, whatever they may be. The information that you give us will be held in complete confidence (as is required of us by the Data Protection Act) and will not be passed on to any third party for any reason.

Who is doing this research?
The research is funded by the Wellcome Trust and is based at King’s College Research Centre at the University of Cambridge. The research team conducting the interviews will be Bronwyn Parry, Julie Jessop and Anji Wilson, who all have a great deal of experience, especially in talking to people about sensitive issues.

Will my taking part in the study be kept confidential?
Anything you say during this research will be kept strictly confidential. Any names that you mention will be removed from the transcripts. Your name and address will only be stored for the time that we need to be in contact with you and this will be kept separately. We will destroy the audiotapes at the end of the study period.

Will anyone be informed about my taking part in the study?
No one will know that you are part of the study unless you tell them. If you want to tell your GP or anyone else we can send you more copies of this information sheet.

How do I find out the results of the research study?
A final report will be available on the website for the Wellcome Trust and at www.kingsbioethics.org

What do I do if I want further information?
If you have any further questions about the study please do telephone, e-mail or write to us. Please keep this information sheet in case there is anything you want to check at a later date. Thank you very much for your time reading this and we look forward to hearing from you.

Bronwyn Parry, Julie Jessop and Anji Wilson
King’s College Research Centre,
Cambridge, CB2 1ST
jaj26@cam.ac.uk
amw10@cam.ac.uk
(01223) 334539/334530


Young People - Volunteers Needed

	It has been suggested that the social and psychological context of younger people with dementia is different to that of older people. Younger people are more likely to be working, thus the loss of pension rights may place considerable strain upon the family. The loss of a driving license may also mean loss of independence and possible social isolation may lead to feelings of low self-esteem and depression. All these things may affect children. Family conflict is also often identified by carers as a possible side effect of dementia. Some carers have stated that their children had suffered psychological or emotional problems as a consequence of the dementia. Parents have reported that their children may have suffered emotional problems, problems at school and conflict with the person with Younger Onset Dementia, especially when the affected parent was their father. A researcher from the University of Birmingham is investigating Young people’s thoughts regarding their parent’s Younger Onset Dementia, and the impact that this may have on their relationship. Helping your child to take part in this research would hopefully help us to understand the healthcare, psychological and emotional of children, and to help to build services in the future based on the needs of families. We are looking for young people between the ages of 12 and 18 years, to take part in the study... If you ring this number
	0121 414 7124
Jacqui Allen (Clinical Psychologist in Training) will contact you, answer any of your questions, and send you some information about the study. Should your children decide to take part then she will visit you at home or somewhere else if they prefer and their talk will last approximately 45 minutes. All information would be treated in the strictest confidence. Your child’s participation would be very valuable to this research, and we hope you feel you would like to be involved. The research project is being supervised by Jo Allen and Jan Oyebode who are Clinical Psychologists and may be contacted on 0121 414 7124. Jo Allen and Jan Oyebode

Forthcoming Events

London: The Old Boardroom, National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG. 11.30 Introductions, Discussion, 1.00-2.00 Lunch 2.00-4.00 Your own Experiences.
Dates:-
14th September 2004 Speaker 12.00-1.00 Gail Robinson, Neuropsychologist, National Hospital for Neurology and Neurosurgery
3rd December 2004

North-West Meetings:Carer’s meeting 7.30-9.00pm Mary Dawbers 52 Mallard Crescent, Stockport SK12 1HT
Email: dawbers5@btopenworld.com Tel: 01625 879104

Nottingham: Meetings are from 7.30pm at Lings Bar House or ‘The Goose at Gamston’
Email: carol@pdsg.org.uk Tel: 0845 458 3208