[PCA]
SUPPORT GROUP
newsletter
Welcome to the [PCA] Support Group Newsletter Issue 13, March 2012
The PCA Support Group met on February
3rd in Wilkins Old Refectory, at UCL,
Gower Street site. As per the agenda, Dr
Jonathon Schott presented an update of the
possibilities surrounding future treatments,
followed by a question and answer session
co-hosted with Dr Seb Crutch.
‘Carers’ only PCA
Support Group Mtg
Fri May 25 2012
(RSVP to Jill Walton)
12-2.30pm – sandwich lunch provided!
Topic: Considering issues relating to end
of life care
VENUE: Seminar Room at the Dementia
Research Centre, 8-11 Queen Square,
London, WC1N 3BG.
Nearest underground stations are Holborn
or Russell Square. See page 10 for a map
and directions.
After lunch, Mr Steve Lines , head teacher
at Lindon Bennett School described the ‘My
Requests’ programme he had facilitated
there, before drawing out comparable
associations with the needs of our group.
He assisted members of the group in small
group workshops during which we began
to work towards a similar set of principles
for our group members.
PCA Support Group
Mtg
Friday June 22 2012
This work is ongoing, and you are warmly
invited to contribute your thoughts or
suggestions to jill@pdsg.org.uk [by the end
of April 2012].
(RSVP to Jill Walton)
VENUE: Wilkins Old Refectory, University
College London, Gower Street, London
WC1E 6BT
11am - 2pm (half hour coffee break/
snack lunch included)
Speakers: Dr Seb Crutch : ‘Research
into PCA: what are we finding and what
questions should we asking’
Music workshop to be provided
Tea and coffee will be available upon
arrival, from 10-30am
Please confirm your attendance:
Jill Walton 07592 540555
or email jill@pdsg.org.uk
Map and directions provided in this
newsletter
We welcomed several new members,
attending for the first time, but were
reminded just how difficult it can be to
attend this group for the first time and in the
initial stages post diagnosis. Perhaps this is
something we ought to remain conscious
of as a group, and work towards effectively
incorporating ….
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 Brain Appeal (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 3448 4724.
1
directions
Directions for meeting on 22nd June 2012
Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT
Underground
British Rail
The closest underground stations to UCL are
London has many mainline rail stations. Most
Euston Square on the Circle, Metropolitan and
of these are a short journey away from UCL,
Hammersmith and City Lines, Goodge Street
with the stations at Euston, King’s Cross and St
on the Northern Line and Warren Street on the
Pancras being within easy walking distance.
Northern and Victoria Lines.
British Rail Infoline: 0845 748 4950.
London Underground Infoline: 020 7222 1234.
Parking
Buses
UCL Helpline 020 7974 4651 or 020 7974 4655
UCL’s Gower Street site is served by many
(Staffed Monday -Friday 9.00 am to 5.00pm)
Transport for London bus routes. Buses travelling
from north to south stop in Gower Street,
We are very conscious that travelling to and
immediately outside UCL’s main gate, while those
around London can seem a daunting prospect.
travelling from south to north stop outside Warren
Please see the advice regarding travelling on
Street station, about five minutes’ walk from UCL.
London underground, later in this newsletter,
and also contained in the minutes.
Services to these stops include route numbers: 10,
Be aware that pre booked travel is generally
14, 24, 29, 73, 134, 390.
cheaper than tickets purchased on the day, and
London Buses Infoline: 020 7222 1234
that the MEF does extend its remit to assistance
with travel costs where required.
2
contributions
Your contributions
‘Show and Tell’
Members of the PCA Support Group have
the on-going 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 liners’ to more detailed
commentaries….whatever feels most
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!
appropriate!
Flights with a partially sighted
person
Apple i phone
‘….the Siri i phone has been a tremendous find
for us…’ One particular member of our support
group, having been cut off from his family
and environment because he could no longer
Nowadays one has to pay for any airline
assistance unless you are in a wheelchair or are
partially sighted. The best strategy for patients
use the phone, reconnected with his Universe
simply by using Siri software on the iPhone. He
doesn’t have to rely on knowing what the number
is or even where the buttons are - he simply
speaks into the phone, asking it to ‘review’ before
instructing it to ‘send’. The phone allows you
to use your voice to send messages, schedule
meetings, place phone calls, and more. But Siri
isn’t like traditional voice recognition software that
requires you to remember keywords and speak
specific commands. Siri understands your natural
speech, and it asks you questions if it needs more
information to complete a task. Diane Garfield is
currently liaising with one of the i phone suppliers
in respect of testing the Siri software over the next
few months.
Follow this link for more information:
flying anywhere is to register as partially sighted
(with the RNIB) and so qualify for free assistance.
Despite not being officially registered, BA believed
us and staff were enormously helpful.
Filtered glasses
One thing I wanted to share with others was
our incidental finding out about filtered glasses.
These are overglasses costing only about £20
per pair that look a bit like ski glasses. In my
wife’s case she uses a lemon coloured pair that
takes out all the blue spectrum of light. These
have been the only step forward in her 5 year
history of diagnosis, but were a major find from
some half a dozen pairs that a support worker
thought we might like to try. The only pair with
a filter as opposed to the others which were all
http://www.apple.com/iphone/features/sirifaq.html.
tinted and had an immediate effect. She then
travelled much better, particularly in the car and
was able to watch some television. The glasses
have to be filtered rather than tinted as for normal
sunglasses and there are several other strengths,
colours and spectrum colour eliminators
available.
Her particular glasses were 70% Yellow Spectra
Shield Plus. They were supplied at a cost of
£20.89.
3
contributions cont’
Activities for people with PCA
I
London Underground
have heard it said many times during our
Did you know that you can ring London
support group meetings, that the days can
Underground Customer Services on 0845
be a long time to try and fill with meaningful
330 9880, the day before you are due to use
activity for a person with PCA. In response to
a service, and they will arrange for someone to
an enquiry asking for suggestions, we gave the
meet you in the entrance area of the station at
following response:
which your journey begins. They will accompany
1] the RNIB website has some interesting gadgets
you down to the platform and onto your train and
and art/craft/game ideas in their shop, which can
then radio ahead, to an official at the station you
be accessed via www.rnib.org.uk
next need to use who will assist with any platform
changes you require, before radioing on again,
2] various assistive technologies for people
to alert a member of staff at the station of your
with dementia are described at http://www.
destination, who will assist you from the station
atdementia.org.uk/
up to ground level.
3] ‘Pictures to share’ are a series of books, with
large print photographs which can be useful
PCA Identity Cards
triggers for conversation. I think that there are 12
gentleman who himself was diagnosed with early
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
onset Alzheimer’s disease. It can be accessed
will also bring a supply to forthcoming meetings.
books in the series, and the ISBN no. for the one
about pets is 978 0 955 3940 89. Available from
the Alzheimers Society shop.
4] one of our support group members has started
a Facebook page called Posterior Cortical Atrophy
which people can request to join. You may be
able to generate a live discussion and glean
ideas via that means. Additionally, ‘Memory
people’ is a group which was founded by a
from a facebook account by typing ‘Memory
People’ into the search bar of the home page.
5] Music and music therapy options might be
My name is
explored. Maybe Guideposts Trust Music
I have an
illness and
need help with
l
Other medica
conditions
Therapy might be able to advise? Or
Alzheimer’s Society ‘Singing for the Brain’
may have a local group available.
Please can you let me have any ideas or
Allergies
suggestions which have worked for you? I
will of course forward them to the gentleman
o might help
Someone wh
in question, and also ensure that they are
Name
shared in the next newsletter!
I have
Daytime tel.
me
[PC A]:
posterIor co
Evening tel.
rtIcal a
trophy
this affects m
y vision and th
inking
I would apprec
Doctor
iate your help
please read th
is card for mor
e
information on
how to help
thank you
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
4
Posterior cortic
al atrophy [
PC A] is a progress
condition which
ive
affects the back
of the brain. It
most common
is
ly cause
news & stories
Good Samaritans are everywhere?
Mr Ken Cox and his wife Ann are members of the PCA support group.
Ken has kindly supplied this account in response to Peter Ledgers
touching description of the kindness he and his wife have encountered
since a diagnosis of PCA.
It was almost a relief for our family, my wife
Ann and me when she was diagnosed with
PCA in January 2006. At last we knew the
course of Ann’s difficulties, which began about
four years earlier, a few years after she retired as
a Headmistress in 1994.
We lived in Edenbridge, a small country town in
Kent, and Ann was a keen member of the local
group of the National Women’s Register. They
met in members homes every fortnight and
planned their own programme every year. Their
visits to the theatre or cinema were followed by
discussion and critiques; they discussed topical
issues, books, poetry etc. They organised
outings, had meals in local restaurants etc. – a
lively, friendly group of ladies.
By 2003 Ann was finding it increasingly difficult to
play an active part in their meetings and decided
to leave. However, members encouraged her to
stay and several of them started to invite Ann to
join them on ‘outings’ eg: visiting garden centres,
National Trust properties, lunchtime concerts,
shopping, swimming etc. These offers of help
soon developed into a regular monthly rota –
and it is continuing in 2012!! Ann still enjoys
the meetings and especially and company and
friendship of the outings. Members tell me that
they enjoy these outings too. These breaks give
me some ‘free time’, which I greatly appreciate as
a welcome interlude in my 24/7 role as a carer.
The love and support we both feel is a great
stimulus for Ann and gives me renewed strength.
The ladies are truly “Good Samaritans”.
Could the love shown by these Good Samaritans
also be found where you live? Do you have
neighbours who might be interested in an
occasional visit to a local pub or restaurant?
Would they enjoy a visit to a garden centre or
a day out to a place of interest? Perhaps you
belong to a group – Probus/W.I./dancing/Whist,
gardening or allotment club, Rotary? I hope you
find that Good Samaritans are everywhere! I
guess you know a few already.
Ken Cox
A personal care account
Many of you will know Catita Lumley and her family, as longstanding
members of this support group. It was with a mixture of sadness and
relief, that her cousin, Martina Wise, informed us that Catita had died on
Thursday Jan 26, 2012, aged 67.
Martina was keen to share some of the things
they had learned along Catitas journey from
diagnosis onwards, and we share them here, in
the hope that by their reading, others may feel
in some way, less isolated.
From the earliest stages of accepting the
diagnosis and all that it would inevitably entail,
Elizabeth Kubler Ross’ published work around
loss, bereavement and grief was a source of
great help and understanding. ‘On Death and
Dying’ is her most famous book, but much helpful
information can be accessed via her website:
www.ekrfoundation.org
Establishing a Lasting Power of Attorney, and
the drawing up of Living Will were two practical
provisions which very much impacted and eased
some of the decisions around Catitas care needs.
The Liverpool Care Pathway was particularly
inspirational in assisting the family in their
thinking around end of life decisions. Details of
this pathway are available at www.mcpcil.org.
uk/liverpool-care-pathway (continued overleaf)
5
news and stories cont’
With regards to some of the more practical
aspects of caring for Catita, Martina was keen
to share the following:
Take spare clothes, a damp flannel, and plastic
bag for disposing of any soiled garments,
whenever you go out
Plastic adhesive window coverings, available at
B and Q, or similar hardware outlets were helpful
for covering windows, which were triggering
visual disturbance if left uncovered, and where
curtains did not help.
Acknowledge the need to ask for help. And
remember that anyone who stops is usually
prepared to help!
Martina found the Alzheimer Society ‘Talking
Point’ forum a useful point of contact.
A sensor, between the threshold of the bedroom
and landing, and possibly at the front door too,
with an alarm monitor, allowed for the carer to
rest/sleep knowing that the alarm would sound in
response to significant activity.
Stress balls were a useful and possibly
therapeutic thing for Catita to handle.
A very soft cushion or teddy bear was used a lot,
when she wanted to hold and squeeze objects.
Involve younger family members from the outset
both in explanations regarding the way in which
a relative is unwell, and in ways of being able
to help. Taking the dog for a walk, or collecting
the paper are ways in which children can be
empowered to feel in some way useful and
able to offer support. ‘Always and Forever’,
written by Alan Durant was the book they
found most helpful in explaining to children and
grandchildren the pathway they needed to be
prepared for.
Even when words were difficult to find, Catita
could sing or hum in tune, and so music had an
important part in her care provision.
Distinctive food smells seemed to be a good
way of lightening difficult moods, or averting
challenging behaviour. During the day this could
be the actual cooking of food, but even at night
time, thyme, rosemary or garlic seemed to
produce a positive effect.
Use Velcro-ed on buttons, purely for decorative
purpose, and which can be played with and
removed without consequence.
In the later stages of care management:
Oral care was best provided via a flannel glove.
The carer placed toothpaste on a finger and
rubbed rather than brushed teeth.
Holding the chin down slightly, between thumb
and forefinger sometimes helped in keeping the
mouth open for long enough for oral care to be
achieved.
Swabs on long handle sticks were useful for
mouth care.
Keep skin well hydrated, and protected where
necessary with Sudocrem.
Evian facial aerosols were a gentle way of
refreshing.
Beanbag neck supports provided a comfortable
support to head and neck, as did the carer gently
taking the weight of Caritas’ head, or using head
massage as a therapeutic tool.
Knee separators for use in the bed became
particularly important for pressure relief and
comfort.
Although an electric pressure relieving bed was
a great asset, problems did arise if ever there
was a cut to the power supply. Martina suggests
keeping a blow up airbed, deflated, under the
mattress, which can be manually inflated if power
is going to be lost for any significant period of
time.
Fresh pillowcases are a lovely way of making the
bed feel clean.
When Catita was no longer able to eat, the carer
pureed ‘normal’ food, and used a 50ml syringe to
squirt liquid into the space between Catitas teeth
and cheek. Gentle stroking seemed to help her
swallow. Catita had asked not to be PEG or naso
gastrically fed.
Bath towels rolled to help maintain position in the
bed were a softer alternative to some of the other
aids provided for this purpose.
Whilst stimulation has its place, remember the
value of silence. Simply sitting and reading in the
same room is sometimes enough.
The PCA Support Group did make reference to
Catita at their meeting on Friday February 3rd,
which co-incided with the day of her funeral.
We of course send our condolences and kind
regards to Mr Lumley, Martina and the wider
family.
6
more news
‘This is Me’ leaflet launched
Alzheimer’s Society has launched a
leaflet called ‘This is me’ for people
with dementia who are going into
hospital.
‘This is me’ is a simple and practical tool that someone
going into hospital can give to staff to help them
understand the condition. It provides a ‘snapshot’ of the person with dementia, giving information
about them as an individual, such as needs, preferences, likes, dislikes and interests.
This should enable staff to treat each person as an individual, thereby reducing distress for them
and their carers and helping to prevent issues such as malnutrition and dehydration.
The Royal College of Nursing is supporting the ‘This is Me’ initiative.
The leaflet can be downloaded via alzheimers.org.uk or ordered by telephoning 01628 529240
Message in a Bottle
In a recent meeting, the concerns around
conveying emergency information in a crisis
were discussed, and members of the group
may be interested to know about this scheme.
The Lions ‘Message in a Bottle’ scheme is a
simple idea designed to encourage people
to keep their personal and medical details on
a standard form and in a common location
- the Fridge. Whilst it is focused on the more
vulnerable people in our community, anyone
can have an accident at home, so this scheme
can benefit anyone.
Message in a Bottle is an initiative that very
many Lions Clubs across the country have
taken to and recognise as a means of fulfilling
their motto “We Serve”, often funding the
scheme from their own charity accounts.
This scheme is free to the user. As a minimum it
will save the Emergency Services valuable time
identifying you and your emergency contacts.
By telling whether you have special medication
or allergies or not, it is a potential lifesaver and
provides peace of mind to users and their friends
and families.
Bottles, which are free of charge, can
usually be found in your local Chemist or
Doctors Surgeries. Thanks to a number of
other organisations, you may also find
that you can obtain one through your
nearest Neighbourhood Watch group,
Age Concern, Council Offices, Housing
Associations and many other places
including Police stations. If you are unable
to find a Bottle, please contact your local Lions
Club.
If you have any difficulties in finding your nearest
Club, or would like to know more about this
scheme, please E-mail: mdhq@lions.org.uk
miab@lions.org.uk or telephone 0121 441 4544.
Dementia Awareness Week 2012
This year’s Dementia Awareness Week will
take place between 20 and 26 May. The aim of
the week is to increase public awareness and
understanding of dementia and get people
thinking and talking about it. The PCA Support
group will be represented in the main UCL
Hospital in Euston Road on May 24th. You may be
involved in local awareness activities, and if you
require copies of the new PCA Support Group flier
for your event, please let me know!
7
regional meeting
Worthing PCA Support Group Meeting
As you know, our support group meetings to date have all been held
in London. Getting to London for a meeting is not always ideal, and in
some cases, prohibitive for people.
We do have the vision to facilitate local regional
meetings, to take place independently of the
London meetings in areas where groups of 2, 3
or more members want to come together. We
are therefore delighted to inform you about a
regional support group meeting that we are
trialling in Worthing, on April 20 2012.
The meeting will take place from 12noon2.30pm, at: 27 Stone lane, Worthing, BN13 2BA
I am informed that the venue is located in a
residential area so there are no issues about
parking charges or spaces, but please avoid
blocking the entrance of drives of local residents!
The meeting will begin with light lunchtime
refreshments as people arrive, hopefully allowing
introductory informal exchanges to take place.
After lunch, we will spend some time explaining
the rationale behind the establishment of local
support group networks, and discussing the
objectives, format and remit that this group might
want to take on.
We very much hope that other regional groups
will begin to develop in the near future and
would be delighted if you were able to join us in
Worthing on April 20th.
Please don’t hesitate to get in touch if you have
any questions, to express an interest in coordinating a local group, or indeed to confirm
your attendance at this one!
8
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 …
Blue badge parking permit
Assessment of need: for
RNIB: Support and advice 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]
people with sight loss. Tel 0303 123
9999 E-mail helpline @rnib.org.uk
Medic Alert or other
identification networks
Lasting Power of Attorney:
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
9
map for queens square
Carers only PCA meeting;
Fri May 25 2012
12-2.30pm – sandwich lunch
provided
Seminar Room at the Dementia Research Centre,
8-11 Queen Square, London, WC1N 3BG.
The nearest tube station is Russell Square.
The nearest mainline stations are Euston, King’s Cross
and St. Pancras.
10
minutes from last meeting
Minutes of PCA Support Group Meeting, 3rd February
2012 at University College London: Wilkins Old Refectory
Dr Jonathan Schott, from the Dementia Research Centre, Institute of
Neurology “New Trends in Research” and Steve Line, Head Teacher of
Lindon Bennett special School “My Requests”
Venue: We would like to express our thanks
3 . The Programme. Dr Jonathan Schott “New
Trends in Research”
to U.C.L. for allowing us to use this beautiful
venue. It is perfect for our members, with easy
3.1 Overview. The greatest wish of all new
access from street level. With its own set of
patients is to get treatment. Their greatest
self–contained WCs and cloak room, it provides
need is to understand that the disease is
a comfortable and secure environment. There
progressive and incurable and that the
is easy access from public transport. There are
ongoing maintenance of a healthy lifestyle
small flights of stairs from all nearby Tube stations
is vital: Eating a good diet, not smoking,
up to street level, however, but there are lifts and
watching blood pressure etc. We cannot yet
escalators for most of the way up from the track.
stop progression: but this is our aim.
Essential car users should contact UCL, if we use
3.2 Good medication needs to work for close on
the venue again: there is a small car park and the
100% of patients – without side effects. It must
university may be able to help if there is advance
be cost effective.
notice.
3.3 PCA is a syndrome brought on by Alzheimer’s
1. Attendees: 36 members attended with 9
Disease. We suspect there will be a genetic
NHNN staff and speakers. Seb welcomed a
component in some cases, but this is as yet
number of new members from Aldershot,
unproven.
Bayswater, Devon, Diss, Hackney and Pratts
3.4 We suspect that it is caused by particular
Bottom. We hope you felt comfortable with
triggers or events, so research is aimed at
us and look forward to meeting you again at
establishing what triggers the build up of
future meetings.
proteins which are present in patients’
2. News of Members: After this welcome, Seb
brains and how this can be prevented.
continued his opening remarks with news
3.5 It is much easier to treat a disease in its
of other members. Sadly, we learned of the
early stages. We aim to stop abnormal
death of Katita Lumley, who died the previous
proteins from accumulating, to clear the
week. We extend our warmest regards and
abnormal ones , to stop inflammation and
sympathy to her family during this time of
stop pathology. current treatment involves
bereavement.
Acetylcholinesterase inhibitors – Doneprezil,
2.1.After a lot of hard work from Jill and active
Rivastigime, Galantamine and Memantine.
4.1 Drug Development. Drugs need to penetrate
support from local members, we are happy
to announce that our first regional pilot
a complex organ and their development in all
meeting will take place in Worthing on Friday
medical areas follows an established route:
April 20th. We wish them every success: more
for Alzheimer’s, in general. the stages are:
details to come in the News Letter.
• Pre-clinical – study of chemical blockers
2.3 Riitta Kukustenvehmas will be leaving
• Animal studies – for safety tests
the NHNN in May to facilitate a move to
• Tests in healthy volunteers
Montreal. Her talented work has been much
• Trials in small numbers of patients
appreciated by all our members and we
• Large multi-centre trials
would like to express our thanks to her and
• Licensing
very good wishes for the future when the
• On-going monitoring.
move comes.
11
The cost of this process is 1 Billion US Dollars.
minutes cont’
4.2 The Challenges for PCA . Not all sufferers
pragmatic approach.
have Alzheimer’s disease (although most do).
5.7 There is a psychological down turn if the
We urgently need better diagnostic techniques.
drug is removed. However, when it does
4.3 Pathways to the development of PCA may
become ineffective, Doctors are not allowed
not be the same as those for “typical”
Alzheimer’s. We need laboratory research
to prescribe a placebo.
5.8 Factors concerning environmental issues
followed by blood tests to establish
are at present largely unknown. There are
susceptibility to the disease. There are no
no data bases as yet to chart gene defects
uniform diagnostic criteria and hence an
which may be common to cancer/neuro
urgent need to harmonise these across
degeneration/ heart problems etc.
centres. Dr Seb Crutch is currently organising
5.9 Genetic factors are not linear. The progress
an international meeting to harmonise
of genetic mapping for PCA attempts to
treatment and diagnostic methods.
distinguish between genes causing disease
4.4 PCA is difficult to detect early. We need better
and the predisposition to disease. As with
scanning tools: better education of GPs and
research into “risk genes” that predispose
Opticians: more popular awareness raising,
patients to succumb to Alzheimer’s, research
à la Terry Pratchett: and more academic
is in the very early stages. There is still a
awareness raising.
need for research into the donated brains of
5.1 Questions from the Floor: Aricept is not an
ideal medicine: What does it do? Brain cells
sufferer’s children (following death).
5.10Are pills the best method of delivery of drugs?
die during the disease: Aricept boosts the
There is a risk of infection with injections. Pills
levels of the neurotransmitter acetylcholine
are cheap, practicable and readily available.
and the sufferer’s alertness increases. It is
Research into other methods such as gene
rather like the postman who helps to deliver
therapies and various infusions are simply
messages and hence there is a gain in self-
not currently researched.
confidence and a rise in the MMS. However
Lunch break
the effects can be nebulous, not as precise
Steve Line “ My requests” - and how the
as in the trials. The drug works for a number
project was set up. The Lindon Bennett
of years but we cannot yet predict the various
school is a primary school for pupils with
stages as accurately as we need to. Patients
multi handicaps and severe learning
however notice a difference with the drug
difficulties – which include both physical
and can experience a downturn if it is missing
and mental disabilities. “ My requests”
for as little as 2 days.
was a project involving, pupils, teachers,
5.2 Patients are concerned at why a drug may be
parents and carers, support staff of all kinds
unsuitable for them and are often frightened
associated with the school, to write easily
of giving up the drug temporarily when
understood guidelines for how the children
results are unclear, in case they cannot get
wanted to be treated by those caring for
back on to it again.
them. The poster they produced has been
5.3 MMSE (the mini mental state examination/
circulated with the news letter. Steve stayed
test) is supposed to be an indicator, but there
with us, as we started work on brainstorming
is still a need to listen to patients in addition.
the needs of PCA sufferers and their carers
5.4 The progression of the disease is difficult to
when hospital treatment is needed for other
assess – we still need more experience of the
early and late stages of the disease. Aricept
conditions.
6.1 12 years ago the staff at Lindon Bennett were
can become ineffective when the patient falls
unsatisfied with the established protocols and
off the MMS scale.
regulations for the treatment of children with
5.6 However non-verbal clues are important in
disabilities. Golden rules such as “You will…”,
the later stages pointing to the need for a
“You must not…” seemed irrelevant. They
12
minutes cont’
wanted positive guidelines, requests that
6.14 Don’t get overwhelmed by difficulties.
were born of the children’s own perceptions
7.1 Setting up your own requests. Be aware of
of their needs and those of parents/carers (of
all kinds) and which would positively engage
who you are, when publishing requests.
7.2 Who is in your group? Are you including those
them in their treatment.
who can’t speak and can’t sign? Be aware
6.2 They began with a brainstorming activity
of different abilities and ages. Who are the
within each of the groups involved. Children,
Parents, teachers, therapists and so on right
requests for and to whom?
7.3 Identify needs. Communication, safety – the
down to the school bus drivers collecting the
children each night formed such groups.
need to allow choice.
7.4 Who should honour your requests?
6.3 Following this, themes emerged, which later
Professionals who have responsibility for you?
became the requests on the poster. Steve’s
The general public? Have contact numbers
talk concerned the development of these.
for them.
6.4 “Give me the dignity and respect I deserve”
7.5 Why do you want to publish in the first place?
“Always give me time to respond” Take longer
Is it for a better way of working together? Is
to process information, instructions and
it to achieve mutual respect? Don’t assume
requests. Take time to complete an activity
that everyone knows who you are. Is it to
with me.
encourage others to give support? Or is it to
6.5 “Remember I like to make choices” This
concerned a raising of the awareness of
gain recognition?
We owe a special vote of thanks to Steve,
individual children’s needs. An awareness
who came in spite of needing to recover
of choice as part of learning and the
after an accident. He stayed with us as we
maintaining of independence.
started the brainstorm, aware that some
6.6 “Keep me safe” Children have many fears of
members would already be tired by the first
what might happen to them.
session and would need to make their way
6.7 “Tell me what is happening next” How can
home. For this reason our brainstorm is being
you help the totally dependent? Tell them the
written up separately to allow for e-mails and
process of what is happening, as it happens.
other contacts to come in. Please send any
6.8 “Stay calm” The importance of staying
contributions you would like to make to
calm and positive, even when behaviour
jill@pdsg.org.uk by the end of April.
is upsetting and challenging. It is vitally
important to the person concerned- even
if they don’t look as if they are aware they
have difficulty. Look behind and beneath the
exterior.
6.9 “Let me communicate for myself” Look at
non verbal communications. Don’t finish
sentences for them. Let your approach be
consistent.
6.10“Talk with me, not about me” Never talk over
children/patients.
6.11“Take time to understand” – and hence
to build confidence and self-worth. Never
assume that what you say is how a child/
patient feels.
6.13“Please, don’t judge me” This refers to social
discrimination of all kinds, e.g. whether
gender or race based.
13
Celia Heath February 2012.