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 Œ91 to July Œ93 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 carer¹s 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 wife¹s 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.

I¹m 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 don¹t 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 Œ91 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    **
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