Hi,

People have been expressing interest in a "PD Village", and what the UK PDS
has been doing in this area. My Father, Derek Coles ([log in to unmask]) was
National Chairman of the PDS when a some of these projects were underway,
and has kindly written a summary of the PDS's activities in this area.

If you would like any more information I suggest you correspond with Dad
directly at [log in to unmask] as he doesn't read the PARKINSN list at the
moment. I'll be in the US travelling for the next 2 weeks so probably won't
be in contact for a while.

This is what Dad has written......

------------------------------------------------------------------------------

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 - 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. This
          was the first project 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 project 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 carer's 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
problems of PD.



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:
        - mainly night care assistance
        - help for an hour in the morning and the evening.
        - 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.  There 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 wife's 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 "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 UKP 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 projects have provided good experience and the later ones 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.

   I'm 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 don't 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.


Derek Coles
[log in to unmask]




--------- My opinions are my own, NIP's opinions are theirs ----------
Simon J. Coles                                 Email: [log in to unmask]
New Information Paradigms                  Work Phone: +44 1344 778783
http://www.nipltd.com/                     Work Fax:   +44 1344 772510
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