[PCA]
SUPPORT GROUP
newsletter
Welcome to the [PCA] Support Group The PCA Support Group thanked Dr
Angus Kennedy for giving his time to
come and talk to us at our meeting on
Nov 18th 2011. He described the various
steps involved in the process of achieving
a diagnosis of PCA, and demonstrated
the value of experience in the field when
it came to recognising unusual or rare
diseases, such as PCA.
He was candidly honest about the failings
of doctors when faced with a relatively rare
disease as well as being open about the
difficulties posed in a typical consulting
room setting. The details of his talk are
minuted at the end of this newsletter.
The usual format of informal conversation
during lunch followed, and the afternoon
closed after a series of small group
discussions had allowed for more specific
topics to be touched upon.
Riitta led a group for people who were
facing a recent diagnosis of PCA, Seb took
specific questions from his group, and Jill
and Jane facilitated discussion around
some of the adaptations people had felt
they had needed to make as a result of the
PCA diagnosis.
We welcomed several new members,
attending for the first time.
Newsletter Issue 12, December 2011
Next PCA Meeting
Friday 3rd February 2012
(RSVP to Jill Walton)
11am - 2pm (half hour coffee break/
snack lunch included)
NEW VENUE: Wilkins Old Refectory,
University College London, Gower Street,
London, WC1E 6BT
Speakers: Dr Jonathon Schott and Dr
Sebastian Crutch will host a question
and answer session, followed by a brief
presentation from Dr Schott: ‘Future
treatment: where are we heading?’
LUNCH
Mr Steve Line, Head teacher at Lindon
Bennett School will speak about the ‘My
Requests’ programme he facilitated, to
be followed by small group workshops
in which we will begin to work towards a
similar set of principles for our members.
Tea and coffee will be available upon
arrival, from 10-30am, and will be
available after the meeting until 2-30pm,
for anyone wishing to stay on!
Please confirm your attendance:
Jill Walton 07592 540555
or email jill@pdsg.org.uk
Map and directions provided in this
newsletter.
Please let Jill know if you would prefer to
receive this newsletter in a bold font format.
Myrtle Ellis Fund
The PCA Support Group is generously supported by the Myrtle Ellis Fund, as part of the
National Hospital Development Foundation (Charity number 290173). For more
information on the work of the Fund or to make your own contribution to the running
costs of the PCA Support Group, please contact the Foundation on 020 7829 8724.
directions
Directions for meeting on 3rd February 2012
Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT
Underground
British Rail
The closest tube stations to UCL’s Gower Street
London has many mainline rail stations. Most
site are Euston Square (Hammersmith and City,
of these are a short journey away from UCL,
Metropolitan and Circle lines), Warren Street
with the stations at Euston, King’s Cross and St
(Northern and Victoria lines), Euston (Northern
Pancras being within easy walking distance.
and Victoria lines) and Russell Square (Piccadilly
British Rail Infoline: 0845 748 4950.
line).
London Underground Infoline: 020 7222 1234.
Buses
Parking
UCL Helpline 020 7974 4651 or 020 7974 4655
(Staffed Monday -Friday 9.00 am to 5.00pm)
UCL’s Gower Street site is served by many
Transport for London bus routes. Buses travelling
We are very conscious that travelling to and
from north to south stop in Gower Street,
around London can seem a daunting prospect.
immediately outside UCL’s main gate, while those
Please see the advice regarding travelling on
travelling from south to north stop outside Warren
London underground, later in this newsletter,
Street station, about five minutes’ walk from UCL.
and also contained in the minutes.
Be aware that pre booked travel is generally
Services to these stops include route numbers: 10,
cheaper than tickets purchased on the day, and
14, 24, 29, 73, 134, 390.
that the MEF does extend its remit to assistance
London Buses Infoline: 020 7222 1234
with travel costs where required.
contributions
Your contributions
Members of the PCA Support Group
have the opportunity to contribute to the
newsletter, and thereby ask questions,
share experiences, helpful hints, or stories
which may benefit the wider group.
Updates on issues relating to raising
awareness of PCA or other local initiatives
which members are aware of could also be
of interest .Published pieces could range
from snippet ‘one liner’s’ to more detailed
commentaries….whatever feels most
Thank you!
Simon Lovell [runner number 3616], a friend
of one of our members, Tina Stevens, ran
with Tina in mind when he completed a
‘Mens Health: Survival of the Fittest’ 10k run,
on Nov 12th. The event began at the majestic
Battersea Power Station and featured 14
obstacles over the 10k riverside course.
Simon and his friends finished in the first
500, and donated over £1000 to Alzheimer’s
research. Thank you to the group for their
efforts and the monies raised.
appropriate!
‘Show and Tell’
It was suggested that people bring the gadgets
they have found helpful in managing PCA to
a future meeting, for a sort of ‘show and tell’
session, or equivalent. I put this to you now, in
order that when asked for a future meeting, you
might have things in mind!
London Underground
Did you know that you can ring London
Underground Customer Services on 0845
330 9880, the day before you are due to use
a service, and they will arrange for someone to
meet you in the entrance area of the station at
which your journey begins. They will accompany
you down to the platform and onto your train and
then radio ahead, to an official at the station you
next need to use who will assist with any platform
changes you require, before radioing on again,
to alert a member of staff at the station of your
destination, who will assist you from the station
up to ground level.
PCA Identity Cards
In previous meetings and discussions, we
agreed that it would be useful for people with
PCA, and their carers, to be able to carry a small
card which would alert others to the fact that
there may a need for increased understanding,
attention or patience. We are delighted to be able
to tell you that these cards are now available!
Please contact jill@pdsg.org.uk or telephone
me on 07592 540555 if you would like one! We
will be including them in with all new member
welcome and information packs from now on! I
will also bring a supply to the Feb 3rd meeting.
Please send articles/responses for inclusion in
future newsletters to Jill Walton, 22 Brushwood
Drive, Chorleywood, Herts, WD3 5RT or email
them to jill@pdsg.org
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news & stories
New Venture in Worthing
Then & Now
A
S
group meetings, which will take place in
Until then we had met no one else with P.C.A. &
addition to the ones held in London.
had felt somewhat isolated and ‘odd’ when we
We are delighted to announce that we have
went to general Alzheimer’s groups.
begun negotiations with the Alzheimer’s Society
We had taken over five years to get the P.C.A.
with regard to using their Worthing branch office
Diagnosis since Graham was told, in September
in a pilot programme, to trial the first regional
2002 that he had an ‘eye problem’ which could
carers’ support group meeting. We are grateful
be resolved if he did muscle strengthening &
to Roger and Wendi Kelly for their support in this
tightening exercises on his eyes. In 2005 he spent
venture, and look forward to updating you as
several nights in a London hospital undergoing a
developments proceed.
battery of tests and was still not told for another
We are aware of other group members who have
two months that they had concluded that he
expressed an interest in assisting in a similar
must have Alzheimer’s but that they had not seen
way with regional developments. Please do let
anyone with his exact symptoms before & that no
me know if this is something you would like to
medication was prescribed. After another eleven
be involved in. The Worthing venture will form
months a family member suggested we ask for
the part of our discussions with colleagues at the
a second opinion & we finally came to Queen
Dementia Research Centre regarding the future
Square.
development of the support groups.
In Jan 2007 we saw Dr Mallucci who immediately
It seems very fitting to juxtapose this new
recognised Graham’s symptoms as typical of
venture for the PCA support group with the
P.C.A. & he started on 5 mg of Aricept.
following account supplied by Graham and Sue
Compared with now it seems we were in ‘The
Doggett, which symbolises the progression of
Dark Ages’. Just knowing the problem & having
the group over the past 4 years. It also confirms
effective medication made such a difference
the need for the regional expansion of the
to Graham’s life & outlook & helped us all to
group.
understand & cope with the symptoms.
s many of you are aware, one of the aims
of the PCA support group is to extend its
remit to encompass regional carer support
even couples attended the first P.C.A.
Meeting, organised by Riitta & Seb at the
National Hospital, on November 2nd 2007.
The P.C.A. Meetings, thanks to Myrtle and her
family, have been a source of information,
friendship & help in what is a difficult & rather
bizarre experience.
NOTICE: Carers only meeting
This is scheduled for May 25th, and next full meeting June 22nd 2012.
news & stories
The outstretched hand of a stranger
Peter Ledger wrote this article for the Newsletter. It is describes the
kindness he has encountered since his wife was diagnosed with PCA.
My wife Margaret was diagnosed with PCA
in 2006. Despite this, for the next five years we
were able to sustain a reasonably normal life, so
much so that in December 2010 we flew to Perth,
Western Australia, to spend Christmas and New
Year with our son and his family.
Returning in late January 2011, as we walked up
and down the aisle of the aircraft to get some
exercise, we passed two men. To an English
observer they were classic Ausies, gregarious,
physically large with tattoos on their arms. Where
we were being ‘sensible’, taking exercise, they
were standing in the galley area enjoying a laugh
and a beer.
Later in the flight, Margaret needed to use the
loo. It was dark and as I gingerly steered her up
the aisle we encountered a heavy curtain. It was
effective in cutting the light out from the cabin
but was a real obstacle for the two of us. I was
struggling to find a way through when a hand
stretched out and parted the curtain. On our
return, I encountered the same problem and,
once again, the hand of the stranger stretched
out and opened the curtain.
I settled Margaret in her seat and went back
to thank the person who had helped me. The
hidden hand belonged to one of the “classic
Ausies”. I thanked him for his help and explained
Margaret’s situation to which he responded: “no
worries, mate! We think you’re doing a great
job.”
The memory of that incident has never left me
and it is the kindness of strangers that has often
sustained me when I have found the going rough.
It’s a phenomenon which is hard to explain,
especially in a material world often characterized
by a “me first” attitude. The reality is, I suspect,
that most people have an innate sense of
kindness and compassion which is not always
apparent in the fast moving world of the 21st
century.
This was summed up for me on a walk through
Topsham, a small village in Devon. The
pavements were quaintly narrow and Margaret
bumped into a child walking in the opposite
direction with her mother. Margaret apologized
but mother and child were insistent that it was
their fault and it was for them to apologise. They,
like the “classic Ausie” on the plane, had no idea
who Margaret was or that she might suffer from
problems with visual cognition. It was some
deep seated insight which indicated to them that
Margaret was a person to whom they wished to
show consideration. So kindness is everywhere;
you only have to look to find it.
Margaret has now had to move to a nursing
home. The care she receives is exemplary but
it was a devastating moment when it came.
However my spirits were lifted by an incident
during an early visit. Another resident in the
lounge with Margaret became distressed.
Apparently no longer able to speak she could
only make a wailing sound to gain attention. I
felt completely helpless and set off to find one of
the staff. As I crossed the room another resident,
an elderly man dependent on a Zimmer frame,
called out: “what’s the matter Dot?” Shuffling over
to where she sat he repeated: “what’s the matter
Dot? Would you like to sing?”
Dot nodded and the old man started to sing: “It’s
a long, long way to Tipperary, it’s a long way to
go…” To my amazement, Dot joined in and her
distress disappeared.
As for myself, I am constantly surprised and
sustained by the kindness I receive. Strangers
often come up to me and enquire after Margaret.
On a recent trip back to Perth, the first on my own,
our son told me that one of his neighbours asked:
“how’s your Dad coping with being on his own?” I
have never seen the neighbour, let alone met him
but the kindness of his sentiment touched me.
Someone, even if he was a stranger, wished to
express his concern for me.
So I wrote this short piece with one person
in mind – if you are a carer and sometimes
wonder how you will carry on, I wrote it for you.
Next time you feel things getting you down, just
remember there is someone out there, possibly
a stranger, who thinks: “no worries mate! We
think you’re doing a great job.”
Checklist
This checklist will remain
a feature in forthcoming
newsletters, and can be
added to as appropriate.
It is a brief reminder and
pointer to those services
which may be of benefit for
people with PCA…….
Assessment of need: for
patient and carer. Request one via
your GP or directly via your local
social service dept.: [Disability
Living Allowance/Attendance
Allowance/Council Tax Reduction]
Lasting Power of Attorney:
Blue badge parking permit
RNIB: Support and advice for
people with sight loss. Tel 0303 123
9999 E-mail helpline @rnib.org.uk
Medic Alert or other identification
networks
Disabled Living Sites: which
needs to be established as soon as
sell products designed to make
possible.
daily living activities easier to
manage .Of particular note is The
Admiral Nurse Service:
information and support for family Knork is a fork with wide, rounded
and bevelled outer tines that will
carers, people with dementia and
safely cut food like a knife, without
professionals. Available locally in
a sharp edge to cut the mouth
some areas for practical support,
of the user.
but helpline open to all. Tel:
0845 257 9406 or email direct@
dementiauk.org
RADAR keys: National
key scheme for toilets for
disabled people. E-mail:
radar@radar.org.uk
Tel: 0207 250 3222
my requests
The agenda for our meeting on Feb 3rd includes a
presentation by Mr Steve Line, head teacher at Lindon Bennett
School, a primary school for children with severe and profound
and multiple learning difficulties, where he facilitated a project
which culminated in the publication of the ‘My Requests’ document.
The statements it embodies are the cornerstone of the school and
are fundamental to the way the school works. Mr Line will talk
about their history, how the ‘requests’ were worked through, the
consultation process around them, and what each request means to
the children and to the school. We are all too aware of the difficulties
mentally disabled people have, when they need treatment outside
of their condition, as in or out patients. As a follow up activity to Mr
Lines’ presentation we would like to facilitate the development a set
of guidelines that patients with PCA can carry, when facing such
treatments.
In order to facilitate the smooth running of the session, we have
included a summary the ‘My Requests’ statements in this newsletter,
in order to give people the opportunity to think ahead of the meeting
about the kind of things they would like to see included. We look
forward to hearing Mr Line expound upon them!
MY REQUESTS
Give me the dignity and respect I deserve
Always give me time to respond
Remember I like to make choices, please help me to do so.
Always look out for me and keep me safe
Always remember to tell me what is happening next
Stay calm and be patient with me
Give me the opportunity and time to communicate for myself
Talk with me, not about me
Please take the time to understand what I am trying to tell you
Please don’t judge me
research funding update
This update, as provided by Seb reveals some very
exciting developments!
In the current climate of economic crisis and stagnation, it would be easy to feel gloomy at the
prospect of finding the funds to support the vital research needed to discover and improve treatments
for Alzheimer’s disease and the many other conditions which cause dementia. However, there is some
heartening news for people with degenerative conditions such as PCA.
Biomedical Research Units
into new preventative treatments, together with
In August, the Department of Health announced
educating the researchers and clinicians of
the funding of four new Biomedical Research
tomorrow through a series of training fellowships.
Units dedicated to research into dementia and
Alzheimer’s Research UK
neurodegenerative diseases. The centres will be
Alzheimer’s Research UK (ARUK) have had a
located in Cambridge, Newcastle, the Institute of
highly successful year fundraising, funding
Psychiatry in south London, and here at University
research and influencing national dementia
College London. Each centre will be funded to a
policy. ARUK are the UK’s leading dementia
total of £4.5m each over five years.
research charity. They have now funded 389
Prime Minister David Cameron said: “This
research projects across the UK with a value
unprecedented investment into the development
of nearly £40 million. They also played a
of innovative medicines and treatments will have
leading role in the Ministerial Advisory Group
a huge impact on the care and services patients
for Dementia Research (MAGDR), which in June
receive and help develop the modern, world-
published a ‘Route Map for Dementia Research’.
class health service patients’ deserve.”
Thanks in part to the work of this group, £18
Health Secretary Andrew Lansley said: “Dementia
million was secured for the four biomedical
research also features strongly in the programme
dementia research units (see above) and
of funding announced today. Dementia is one
funding for neurodegeneration research will be
of the most important issues that we face as
increased by 10% over the next 4 years to £150
our population ages. We know it can have
million by 2015. The ARUK currently fund all the
a devastating effect on peoples’ lives so it is
PCA research conducted at the UCL Dementia
essential that we develop new treatments to help
Research Centre.
NHS patients and their families.”
For more information about Alzheimer’s Research
For further details, see http://mediacentre.
UK and for a summary of their achievements over
dh.gov.uk/2011/08/18/record-800-million-for-
the past year, see www.raysofhope.org
groundbreaking-research-to-benefit-patients/
Wolfson Neurology Initiative
In January 2012, the Wolfson Foundation
announced their intention to fund a £20m
initiative, the largest single award in the
foundation’s history, to support neurology
research (http://www.wolfson.org.uk/grantapplicants/scientific-medical-research/wolfsonneurology-initiative/). We are delighted that it
was revealed in early December that the bid
from University College London, led by Professor
Nick Fox, had been successful. This extraordinary
level of funding will be used to support a 5 year
programme of research into neurodegenerative
diseases including Alzheimer’s disease. The
work will focus will on bringing forward studies
minutes from last meeting
Minutes of PCA Support Meeting 18.Nov.2011
Venue: This time we used the Main Hall at
2.
Jill opened the meeting with a welcome to
Conway Hall, a single room for the main talk,
those present. She thanked Clare Webber for
lunch and coffee, social networking and mutual
help with formatting the Newsletter and for
support. The venue is central (for access by public
our new PCA logo. The balance between
transport) and is close to The National. We are
text and illustrations and links to other
all aware of its shortcomings: difficulty of access
organisations was much appreciated in the
to WCs for sufferers with balance and vision
feedback from members present.
problems and a rather gloomy lighting system:
2,1 Ritta welcomed new members, Kate and
however the inadequate wheelchair access to the
Linda from Sussex, Susanna and Paul from
lunch venue was avoided this time. Jill is actively
Greater London, Will from Berkshire, Bill from
researching alternative venues with rooms on the
Chislehurst, Liz and Garry from Cheltenham.
ground floor that are not prohibitively expensive
3.
Jill welcomed our speaker, Dr Angus
and is grateful for suggestions made.
Kennedy. His topic was “How to become a
We did talk about travel to and across London.
neurologist in one easy lesson.”
PCA members are eligible for a Disabled Persons
4.
Dr Kennedy entered Medicine in 1985 it
Rail Card. If the journey is booked in advance,
took 13 years to become a Neurologist – “a
railway staff will assist with access to the train
cerebral electrician” as he put it.
and should there be an emergency or diversion
4.1 A pre-requisite for a neurologist is the ability
en route, they will also assist with access to rail
to listen, creatively and analytically to what
replacement busses etc. There is a reduction for
a patient describes, so as to know where
patient and carer. London Underground staff
within the nervous system to begin the
can also help. If requested at the start of an
programme of tackling the problem.
Underground journey, a patient can be met and
4.2 Problems can come from the cerebral cortex,
helped to leave the station, or guided across an
the spinal cord, the joints… – the neurologist
interchange. Another consideration for a venue
will begin in the middle and be prepared to
is step free access at Underground stations. An
move upwards or downwards to achieve
advantage of Conway Hall is Lift access to street
diagnosis. Examining the nervous system is
level at Russell Square.
a bit like circuit testing, for example, testing
the eyes, movement etc to find where the
Attendees: There were around 50 attendees,
sufferers, carers and staff from the National. We
fuse has blown.
5.
Up to the 1960s, neurologists had their
extend a very warm welcome to new members:
notebooks plus testing tools to work with.
we hope you enjoyed your visit, and look forward
They could diagnose but not treat the
to getting to know you even better next time.
condition. It was a case of managing the
Unfortunately the microphone failed, so acoustics
symptoms in a vastly changing sphere of
of the big hall meant that it was more difficult for
knowledge about conditions such as MS, ME
some people to hear this time.
etc.
6.
Minutes
1.
The advent of scanning technology brought
a new armoury of tools. Scans challenge
diagnosis. They measure the physical
The meeting began with an informal social
anatomy of the brain, its shape and size.
get-together over coffee. It is, as ever
The measure its function during movement,
important to have this time to catch up on
for example, during movement of limbs, the
news, to get used to the venue and to relax
cross over of electrical impulses.
after long Journeys to and across the capital.
7.
A further leap forward in the ability to
We aim for a global diagnosis in which
measure chemicals in the brain, the result
the importance of follow up and a second
of a 4 year nation-wide research project
opinion are vital.
meant a huge advance in the understanding
8.1 There is a need to publicise the work with
brain function, unheard of in 20 years. Each
psychiatrists: collective skills are needed to
brain behaves individually and the analysis
diagnose and manage symptoms.
of individual reactions leads to an analysis
8.2 The role of work on-line is growing: Google
common to known conditions. It also
means greater complexity in the process
is inevitable, learn to embrace it!
8.3 There is a need to analyse patients over a
of diagnosis. A 30 minute conversation is
period of 10 years and to analyse the brain
needed to sift the information.
after death to check if the diagnosis was
7.1 Hence a different system of running
consultations needed to be set up: A regular
accurate.
9.
Abroad. The USA has many neurologists,
series of 30 minute conversations which
hence raising the question of whether a
gives the patient time to relax and to talk.
patient should see a neurologist first. The
It is important to reduce stress on patient
UK has 500 neurologists: there is a great
and carer, so this slot became the norm we
need to co-operate with other specialists
currently follow.
internationally, e.g. over the value of scans in
7.2 The option to develop on-going contact by
e-mail or phone had to be opened.
adjusting the treatment of ME.
10.
7.3 PCA sufferers often put a brave face
Medication. The variation in local care and
the availability of the latest drugs are
on symptoms in public, but this is not
political issues. Currently there is a 9 month
always an accurate picture of the stage
wait for NICE to approve new drugs.
the condition has reached. Carers do not
10.1 Treatment is inching forwards because of
wish to discourage their partner or spoil a
“good day” for them. Hence is has become
fears of side effects.
10.2 MS patients are willing to take this risk with
important to consult with the carer in private.
7.4 During such consultations, the important
disease-modifying drugs.
10.3 MS is an example of change. A study is on
question is to ensure that the internal
board and on-going to monitor the balance
monitoring system functions properly. A
between chemical change and physiological
carer is in a unique position to notice subtle
deterioration with the aim of improving the
changes and to describe concerns a sufferer
quality of life.
may simply be unable to express. This will
10.3 At present, our aim is early diagnosis,
help to focus treatment on the part of the
monitoring the condition and treatment to
brain that may be damaged.
keep patients going for longer. Repairing
7.5 In looking for a definition, there may well be
problems with words, but we do need to
cells is much harder to achieve.
11
The future. Our hope is to improve basic
perceive patterns within the sections of the
availability of treatment: to establish quality
brain- front and back, left and right.
regional clinics with multi-skilled staff
7.6 In early diagnosis there are fewer
symptoms: diagnosis then leads to advising
available.
11.1 We want to try to deal with the average
the family/sufferer about what to expect
better than we do. To formalise consultation
later on. Symptoms can be treated and
with the carer nationally. To understand
controlled so that PCA sufferers can lead a
better what the sufferer is feeling.
“normal” life for quite a long time.
8. Physical tests e.g. lumbar punctures, can
reinforce the correctness of diagnosis. It is
important to be honest about uncertainty.
11.2 Question from the floor: Is PCA on the
increase? Dr Kennedy sees 3-4 cases per
year: previously he saw only 1.
Time in specialised groups followed for the rest of
the meeting.
Following lunch, attendees had 4 choices
Early Diagnosis with Riitta.
Here discussion centred on how to get the best
for one’s relative. Maximising energy levels.
Coping with print, eg, in the Newsletter – difficult
for some sufferers who prefer to read rather than
be read to.
Pushing a wheel chair for longer than 50 yards is
difficult, when accessing no-step access to trains
etc.
Dealing with disturbed sleep patterns and
dreams as a side effect
Scientific Questions with Seb. The discussion
in this group centred round the role of Clinical
Psychology (understanding the condition) and
Neuropsychology (managing the mood of
sufferers). How tests relate to real-life situations.
The difference between character-led behaviour
and behaviour that develops as a result of
disease.
Factors of coping with Life style with Jill and Jane.
Sleep patterns: dangers of WC visits in the night.
Possibility of a bar across the stairs to stop falls.
Tape and DVD players as a stimulus for people
living alone. Computer and TV access can be
problematic.
Possible solutions: loading tracks onto a UB stick:
Calibre books provide talking books that last for
up to 6 hours: TV remotes from the RNIB with 5
channels only.
Advice is, to take care with spending too much on
gadgets. A swap shop would be a good idea.
Handing over care will always be hard. Expect at
least 4 weeks for a patient to settle into a home.
Chill-out group This regular feature is always
chosen, particularly by PCA people who have
already had a tiring journey to the venue. A long
talk by one speaker is particularly demanding in
such circumstances, where the disease makes
concentration levels much shorter. A rest with
friends and carers is very helpful.
Celia Heath
pca support group mtg
PCA SUPPORT GROUP MEETING
1st July 2011 at Red Lion Square
Venue: I am writing these minutes from 4 MP3
files recorded during the meeting, as I was away
and more secure.
1.2 Her research therefore had 2 aims: 1) to
in Germany 01.07.11. It was lovely to hear all of
raise awareness of the needs of the visually
your voices and to try to identify them via the
impaired, whether that sight loss is due
internet: but please bear with me if the minutes
to PCA, Macular Deterioration, Vascular
are not as detailed as usual! I shall do my best.
Dementia or Alzheimer’s disease. And 2)
The venue and some of the difficulties it presents
to tackle the aim of making the life of the
are well known: however, it is both close to the
sufferer more comfortable and hence of a
National Hospital and central for those travelling
higher emotional quality.
to London from afar.
1.3 Caring for a visually impaired person is a “big
stage” event. Every sufferer and every family
Programme: Riitta Kukustenvehmas welcomed
is different, hence interpreting each person’s
the attendees, beginning with news of members’
needs in an individual task that requires both
fundraising activities. It seems we are following
creativity and common sense.
in Seb’s footsteps after his successful assent of
1.4 Most people prefer to be in their own homes
Mont Blanc last year and there has been both
because they contain familiar clues and
a sponsored swim and a cycle ride- London
memory props. The aim is to help them enjoy
to Paris, which have raised £4,500 altogether
life there for as long as possible.
for the Myrtle Ellis Fund. My own more modest
1.5 A shared life between carer and patient can
climb up Kinder Scout will be on 14 August: I will
even lead to a closer relationship, a new
be sending you all a flyer. Today’s programme
understanding of that person, e.g. a son or
included 2 talks: Pam Turpin “Adapting the home
daughter will learn for the first time of the
environment to cater for the needs of people with
childhood of a parent.
visual impairment.” And Robert Lindsay (Elderly
1.6 Pam first asked “Beryl” what home meant
Client Consultant) “Protecting you and your loved
for her. Her reply was “It is safe, it means
ones, before it’s too late.”
happiness and I can do what I want, when
I want.” Beryl needed to be helped to see
Adapting the home environment to cater for the
and to avoid falls. Technical surveillance and
needs of people with visual impairment. Pam
various gadgets had the dual function of
Turpin.
helping her and informing family and friends
1. Pam began her illustrated and very practical
of her needs.
demonstration and talk by describing the
motivation behind her research into this
Underpinning Pam’s talk was the need to ask
topic. It was fuelled by her responsibilities
patients themselves about their needs for as
as a carer in looking after members of her
long as possible, and not merely to talk about
family and the varied kinds of dementia they
them with other carers and professionals.
suffered from.
2. Ground rules and practical suggestions.
2.1 Patients are distressed and confused by too
Her work underlined the fact that each
much external noise. Even in care homes a
sufferer is an individual, with individual
constantly playing TV can lead to
needs.
deterioration. Switching it off, means sufferers
1.1 Many of the adaptations made to homes and
are enabled to talk. Checking that hearing
care homes need a creative attitude towards
aids are on and functioning properly, clearing
these individual needs and fears, in the hope
ear wax both mean that patients are at
of making patients’ lives more comfortable
ease listening. All family members need to
know how to set and maintain hearing aids!
prompt sufferers to take medication etc.
Echoes are to be avoided: softer furnishings
4.4 However, some gadgets e.g. level indicators
are preferable to hard floors.
for cups, talking books or talking watches
2.2 Glare can make conversation a misery. Multi
may have a limited life. Comments from the
function glasses, e.g .the kind available from
floor reminded us that a patient’s declining
cycle shops with interchangeable lenses
motor skills may not keep pace with them.
for different conditions, can calm a patient.
Individual practical solutions will eventually
Having the right lighting can eliminate
prove more adaptable. No one idea will fit
shadows, which may appear threatening
everyone.
when the correct perception of them is
4.5 In bathroom areas, all white fittings can
deteriorating. Keeping windows clear of
cause serious confusion. A coloured
nets and foliage, lightening the wall colours
toilet seat aids perception and helps
can both enhance natural light and hence
visually impaired people to maintain
improve the mood of patients - and their
personal hygiene in the WC and stop the
carers.
embarrassment of missing the loo. Sudden
3. However avoid too radical a change of décor
patches of dark colours can look like water
which can mean that home is no longer
and patients may be afraid of treading on
recognisable to patients, especially those
them.
who live alone: When no-one is there to
4.6 Mirrors need to be carefully sighted, as
give immediate reassurance, people can
patients can mistake their own reflection for
think they are in the wrong house. So, keep
someone else using the WC or bathroom.
objects in familiar places, especially phones
The same is true of reflections from windows
and torches. Keep wall colours similar and
at night: if curtains are impracticable, glass
replace only necessary furniture, so that the
can be treated with special adhesive film
house smells the same.
available from window manufacturers.
3.1 Worn carpets are a danger, especially on
4.7 Always ask patients about colour preferences
stairs: stair edges may need to be marked.
for as long as possible. Opticians may
However when replacing carpets, remember
be able to say which colours can best
busy patterns can confuse people with sight
be perceived. (The Iris Murdock centre in
problems. Dark colours and shiny floors can
Cambridge has advice and demonstrations
appear to be wet and cause panic.
about colour use).
4. Bathrooms, Dining rooms and Kitchens.
4.8 Aids for professional carers may need to
Be ware of too much white. Add colour
be visual - not all of them share the same
contrasts, e.g. coloured china or coloured
language with patients. Particularly the
adhesive bands on familiar objects, coloured
administration of medication needs to be an
stick-on edges to chairs etc all improve
individual matter. (We heard an example of
declining perception of objects and their
one patient who dropped tablets unless they
positions.
were given one at a time. A visual prompt
4.1 When the memory is failing, you may need to
of a hand with just one tablet sorted the
remove cupboard doors, so that patients can
problem).
see what is inside rather than trying to
remember it – and opening everything.
4.2 Talking stickers (which can be individually
recorded) can assist perception of what to do
The legal situation: protecting your loved one
before it is too late. Robert Lindsay.
Robert’s talk reviewed the three options of
with everyday objects. E.g. “Jenny, shut the
power of attorney that have developed over
door!”
the years. Members have generally made
4.3 The Blind Society in York demonstrates
a number of such objects. Dosset boxes
provision and found it helpful to review
the various options they may currently be
dealing with. For the recently diagnosed, the
7. Lasting Power of Attorney (LPA) is the latest
presentation was a most helpful introduction.
version, again improving protection against
As Pam had pointed out, no patient has the
improper use.
same needs as any other and carers are
7.1 There are two versions, Power over financial
often a patchwork institution - and not, as
affairs, including property and Power to
Robert pointed out, like a Henry Ford motor
decide over issues of health and welfare. This
car: no one size fits all!
latter applies only if the patient is in the care
5. General Power of Attorney (GPA). All powers
of the LEA (as opposed to being in private
of Attorney have to be given by the one
care) and allows carers a protected voice
relinquishing financial (or for LPA, medical)
in choosing when and where care will be
control over their affairs and it is necessary
effected, e.g. in choice of hospitals and care
to register the document for acceptance
homes.
by banks etc. The process can take up to 8
7.2 It is wise to choose attorneys carefully and
weeks. It carries a £400 application fee plus
to include a replacement attorney, if the
£825 in solicitors fees.
situation changes for the designated attorney.
5.1 Information on the financial affairs of the
An interesting example came from a single
person concerned must be up to date.
parent, who wanted her daughter involved
5.2 In GPA a person gives power to a trusted
but also felt the need to ask a close friend to
individual to act on their behalf. It is of limited
join her, as this person knew her day to day
time use, the applicant must have the mental
wishes more intimately.
capacity to understand the application. Their
7.3 Again with both LPAs a pre-defined list must
power ends when the mental capacity is
be notified and registered. Part A is to be
gone. Problems have arisen when the trusted
signed by the donor, provided he/she is able
individual has intentionally or mistakenly
to do so. There is provision for someone else
abused the situation.
to sign on their behalf, if the donor becomes
6. Enduring Power of Attorney (EPA). This
incapable: e.g. a provision can be included
version was introduced in 1986 specifically
to support people with dementia and mental
“only when I lose my memory”.
7.4 The Health and Welfare LPA only applies
incapacity. (820 000 currently have dementia
when the person becomes too ill to act and is
in the UK: 2,000,000 altogether have mental
being funded publicly. It exists to prevent such
incapacity).
things as forced admission to an unsuitable
6.1 It gives the trusted person the power to act
care home. Attorneys are compelled to act in
financially on behalf of the sufferer. It has
the person’s best interest. Two people can act
immediate effect, but must be registered with
on the sufferer’s behalf- severally or jointly.
the Office of the Public Guardian.
Robert’s advice was to keep the provision
Information will be sent to members of a pre-
clear and simple in all applications!
defined list, so care needs to be taken in
7.5 A Health and welfare LPA can include a
drawing this up, since not all members of a
person’s wishes for the end of life. Although
family agree together and objections can
medical practitioners have the final say, they
delay the process, which normally takes
are obliged to consult with family members.
6 weeks. It can be difficult to act in the
interim (e.g. to sort out a lost bank card) but
experiences from the floor showed action can
generally be achieved even then.
6.2 As with all applications for Power of Attorney,
it is important to act soon after diagnosis, so
that the patient and the carers have a clear
idea of his/her wishes.
Celia Heath July August 2011