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I had to ask Simon Coles for help, and he found what his late Father, Derek Coles, had posted to the Net. I remembered it, but couldn't find it in my notes. Thanks again, Simon. ----- The PDS of the UK have for some time been directly involved in progressing appropriate accommodation for people affected by PD. In response to the various contributions regarding the "PD Village". I thought it might be helpful if I were to give some information and background for as Chairman of the UK PD National Society from April 91 to July 93 I was involved with those various projects. The are three projects in which the Society has been involved and which have been operational. The Cambridge Flat, which has now been moved for redevelopment. That was the first and provided a form of respite care. The Walsall project which is a long term care facility and is probably what people are referring to when they talk of the PD village. It is not so large as may be assumed by that term since it is composed of 19 flats. The latest one to be complete is the Inverness Respite Care Flat which provides short term respite care. I visited those at Cambridge and Walsall and as a former carer (my wife had PD with complications and died five and half years ago) I was able to view the facilities from a carerıs point of view. The requirement for these projects initially came from the need to provide some form of respite care so that the carer could "re-charge their batteries". In the UK this had traditionally been provided by placing the patient in hospital for one or two weeks. That proved less than satisfactory for a number of reasons and generally the patient came out of hospital worse than they entered it. This was due to the lack of detailed PD knowledge by the nursing and medical staff-they may know the theory but are often ignorant of the day to day, hour by hour management of the problem. The Cambridge Flat. ------------------------- The first project the Society tried was known as the Cambridge Flat which opened in May 1993. To quote from "The Parkinson", the journal of the Society, it was "Available for people with PD and their carers to enjoy the benefits of a break from everyday life in a home from home environment rather than a hospital ward. It means that the carer and partner can stay together in pleasant surroundings and have the benefit of support from professionals attached to the Chesterton Hospital. For example some carers prefer to have: o mainly night care assistance o help for an hour in the morning and the evening. o daytime sitter, which enables the carer to go out for without worrying about the partner who is left behind. The Cambridge flat provides support and care but also allows you to have the freedom of choice which is so important." The basic idea was good but it had been put together by people who had never had to care for a severely disabled person. Their was no walk-in or wheelchair shower with a seat or handle although there was ample room to install one. The toilet was between the wall and a raised shower cubicle making it very difficult to for anyone in a wheelchair. There were a number of other faults in the design which made it difficult if the disability was severe. For those not so badly affected then it was helpful and many couples used it and found their stay enjoyable. Personally there were two other aspects which caused me some concern. Firstly the cost was very high initially but that was reduced later. Even so their was no provision for the carer to have a complete break. Personally I found that was really necessary if one you were a full time carer. I loved my wife dearly, we had a great marriage, had wonderful support from our son and daughter and I would not have allowed her to be looked after in a nursing home. However, if the disability is severe, which it was in my wifeıs case the caring is a 24 hour a day business with inadequate rest to allow for recuperation. Regular respite breaks are essential if you are to remain fit to provide the quality of care your loved one needs. I have spoken to other carers of the severely disabled people and they all agree that respite care is essential. The second point was the location. It had been sited at the back of an old building and although the accommodation was pleasantly renovated the outlook was depressing. The Walsall Project ------------------------- The "Walsall Project", as it was originally called, was a different and grander concept. Located in a pleasant residential area in the town of Walsall in the English midlands close to Birmingham it resulted from an initiative some considerable time ago to secure funds to provide accommodation for people with PD. Initially there was some debate as to whether the facility should be sheltered housing, residential care, respite care or a nursing home. For those unfamiliar with the British system these provide increasing degrees of care. Sheltered housing allows people with PD to look after themselves independently in self-contained units of accommodation but who would have access to a resident warden for emergencies. A Nursing home would provide full nursing care for those severely disabled while respite care provides the PD person with a temporary stay of a week or two to allow the carer to "re-charge their batteries". The building was designed by a an organisation well versed in the needs of the disabled which is plainly obvious on inspection. Building work was completed in early 1994 but it was more than a year before it could be placed into operational use. Funding was provided mostly from National and Local Government grants with the charity sector contributing a small amount. Changes in Government policy and the introduction of knew concept of "Care in the Community" during its development resulted in some fundamental changes. Those problems are too complex to go into here as many of them relate to the British National Health Service, Social Services and the way help is provided for people with a disability. The complex consists of 19 self-contained flats or apartments in three groups of four and one of five. Each is group radiates out in a star fashion from a central spacious dining and recreation area. At the far end of each group there is a separate pleasantly furnished sun-lounge. All flats and amenities are on the ground floor(street level for our friends across the pond!) and fully accessible with a wheelchair. Each flat has a good sized bedroom, lounge area, a mini kitchen with sink, fridge, worktop and compact oven/microwave. The bathroom has been carefully constructed to be disable friendly. Two way speech alarms have been provided with a shower room call point. Specially formulated wheelchair friendly carpeting has been installed and the central heating is individually controlled and supplied via low surface temperature radiators to prevent accidental burns. There are relaxing dining facilities in an attractive wood panelled central atrium, with meals taken there or in the flat. A furnished self-contained apartment has been provided for short stay guest. A full in house laundry service is provided. The whole atmosphere is light, airy and relaxing. The local Branch of the Society did much to promote this facility and it stands as a tribute to their hard work and tireless dedication. They continue to support it and provide an adapted minibus for outings. At present about 17 of the flats are occupied. There is a fully trained senior PD experienced nurse in attendance who is supported by some care staff. The weekly cost is presently £350 or $546. Inverness Respite Care Flat. ------------------------------------- The Inverness Respite Care Flat is similar to the Cambridge flat in that it provides sort term respite care. Summary. ------------- All three have provided good experience and the ones that follow build upon the experiences of earlier ones. One of the problems being experienced at Walsall is that the degree of care is adequate while the patient has a reasonable amount of self dependence. When that becomes impaired and a higher degree of care is required that is not possible under the present arrangements although they are trying to overcome that difficulty. I hope this will give you an insight of the sort of things we are tying to do in the UK in regard to providing care for those affected by PD. With each project, hoprefully, we get a little closer to solving what is quite a complex problem for as we all know PD affects people in different ways. The future - a personal view. ------------------------------------ Personally I would like to see an all-in bracing facility along the lines I suggested in August 1992 when as Chairman I put forward a paper suggesting what I called a "Parkinsonian Centre". The following is the basis of that paper which may be of interest. "The Parkinsonian Centre would support the following activities: 1. Residential & Respite Care. 2. Training. 3. Research Co-ordination. The Centre would be located in a large renovated country manor house with large grounds to allow for expansion as required. We could then provide respite care facilities, residential flats for those who are so severely disabled they can no longer stay in their own homes (this would be particularly helpful for those who are either single or have lost those who cared for them). Provision would be made for a full range of PD specialist care, nursing, physiotherapy, speech therapy, occupational therapy, a resident doctor etc. Facilities would be available to take sufferers and their carers on organised outings etc. A centre for Conductive Education and one for counselling, similar to the Romford Project, could be included. PDS funded research could be technically co-ordinated from there by a research scientist who could establish a computer database covering World-wide PD medical research, alternative medicine developments, and welfare programmes. A PD medical and technical library could be established that would be the best of its kind in the World. Such facilities would encourage researchers to obtain up to the minute information on the latest World-wide developments in PD which could be provided on a fee basis. In turn they could feed in their research developments to us. Iım not an idealist, researchers have vested interests in protecting their research information until they feel able to publish. The Drug Companies need to consider their market and share rating. However we need to ensure that we are not funding research that is being carried out in some other country. Our interest is to ensure maximum benefit for the sufferers. At present PD research intelligence is only being done on an ad hoc basis and no one has a World-wide database of research specifically targeted at PD. There are medical research databases but I donıt believe they are being screened and analysed with military precision. How many researchers are there that live with PD 24 hours a day (that can put the matter into a different perspective)? Training courses could be run for nurses (Hospital and District) so that they would get hands on experience. Courses and seminars could be arranged for GPs (they are obliged to attend so many training courses a year) with more advanced courses for junior consultants. Consultants who attended the YAPP&RS seminar of November 91 found it very illuminating as they saw the Parkinsonian in a different setting from the consulting room. The possibilities are endless and I am sure each of you will have many more ideas. It should be a place that is light, airy, filled with joy that is a delight to live and work in with grounds and gardens well tendered for (and by )patients which they, their families, and visitors can enjoy and obtain the specialist care at present lacking in established facilities. Before proceeding with such a venture we would need to do a feasibility study or business plan to identify the capital, operational and maintenance costs, methods of supporting the ongoing operation, economic size, possible location, staffing levels etc." For various reasons that concept has not been pursued but I still feel it would provide the best of all worlds for those who are affected by PD. I hope the above has been of interest and informative. If anyone is interested in the idea of a Parkinsonian Centre I would be happy to discuss it further. ---------- You may also find more useful stuff by going to http://parkinsn.coles.org.uk/Parkinsons/PARKINSNLog.nsf/Main/$searchForm?SearchView and searching for "Derek Coles". Hope that helps, Simon ---------------------------------------------------------------------- Simon J. Coles Email: [log in to unmask] The Adrienne Coles Memorial Trust http://www.coles.org.uk/ ** Dedicated to Parkinson's Disease Information on the Internet ** =============== Life is too precious to take seriously ===============