West London & Middlesex Branch
November 2016, Issue 98
Branch News
Join us for our seasonal party!
The committee is delighted to invite you on
Sunday 27th November to our annual
branch seasonal party.
Our party is a less formal version of our
usual open meetings, where we come
together to enjoy mince pies, mulled wine
and a good catch up!
Branch chair, Janis, says: “If it’s a while since
you have been to a branch event, why not
come along to meet up with old friends. We’d
love to see you.”
If you need help with finding your way to the
venue or if you live with MND and have
difficulty arranging your own transport, please
contact Mandy or Emma.
Everyone is welcome – carers, friends and
family and, of course, people living with
MND. If you are newly diagnosed with MND
or this is your first meeting, we understand
that it can be difficult to make the decision
to join us, but we will have plenty of
volunteers on hand to introduce you
around, make you feel welcome and answer
any questions you may have.
We look forward to seeing you from 3-5pm on
Sunday 27th November at:
St Paul’s Centre
St Paul’s Road
Brentford
TW8 0PN
Sending best wishes to you all for 2017!
We will have Christmas cards for sale in aid
of our local branch of the MND Association
and we will provide free-of-charge massages
from a professional masseuse. An extra
special treat this year is that the branch’s
very own Keith will be performing live with
his band!
What’s more there will be activities for the
children, as well as maybe even a special
guest wearing red and bearing gifts(!), so
please do bring along all the family.
Will Santa Claus join us again this year?
Find the Branch Facebook page by searching for West
London and Middlesex MND or through this link
This issue…
News & branch
events
Pages 1–5
Information, hints
and tips
Pages 6–8
Follow us on Twitter
@WL_MND
Fundraising
and
Campaigns
Pages 8–12
Page 2
West London & Middlesex Branch
November 2016, Issue 98
Improving wheelchair provision for people living with MND
September open meeting guest speaker- Sarah Vines
Report written by Emma Wilson
At our September open meeting we were joined by guest speaker Sarah Vines, who is the
Mobility Services Manager at the Queen Elizabeth Foundation (QEF), based in Carshalton.
Sarah leads a project aiming to improve the wheelchair service provision to people living with
MND across the South East of England.
Two key problems that were identified in provision of wheelchairs for people living with MND
were:
1. A long waiting time, and
2. Equipment that did not fit the individual’s needs
QEF aims to rectify these key issues and provide mobility support in a multitude of ways, some
of which are summarised below.
 Our local QEF base, in Carshalton, boasts an assessment area, a demonstration area and a
private track. This means QEF can provide not only the most suitable wheelchair for the
individual, but are also able to demonstrate how to best carry out day-to-day activities like
how to get in and out of the car or on and off a bus with the wheelchair.
 Moreover, QEF provides services to help prepare you for going on holiday with your
wheelchair, something which can often seem like a daunting prospect. At its base in
Carshalton, QEF has the provisions to demonstrate how you and your wheelchair will travel;
from leaving home, getting to the airport, to getting on the plane itself. Additionally, it
provides advice for what you should say to your airline to ensure you have a relaxed trip.
 QEF provides training for health care professionals as well as Association Visitor volunteers.
 QEF can also provide driving assessments and equipment that may enable easier and safer
driving for people living with MND.
 QEF has two occupational therapists. Lynne Hills attends the MND clinic at Queen Square
(National Hospital for Neurology and Neurosurgery) every week. A second occupational
therapist, for which QEF is currently recruiting. attends the weekly clinic at Kings College
London.
St. Paul’s Centre
St Paul’s Road,
Brentford
TW8 0PM
 Sarah also introduced the new neuro-chair, originally developed by an occupational
therapist, Jenny Rolfe, in Oxford. Jenny asked the three main manufacturers who provide
motored wheelchairs to the UK to come up with a chair to meet the needs of people with
MND from the early stages all the way through to when users need more support, and at an
affordable price. The neuro-chair meets people’s needs for a much longer period and the
price has been negotiated down greatly. The project was nominated for a Health Service
Journal award. All three types of neuro-chair are available at the QEF mobility centre for
demonstration, alongside other more traditional chairs, scooters and hoists.
Continued over the page
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West London & Middlesex Branch
November 2016, Issue 98
Improving wheelchair provision for people living with MND
 QEF has a small fleet of mobility vehicles available for hire.
 QEF has a donation system, whereby people donate their old equipment, scooters and
wheelchairs, which can then be recycled and reconditioned to be sold or rented at a very
subsidised rate. Please note that if you have equipment you would like to donate to be
recycled it can be collected from anywhere within the M25.
 As part of the charity, QEF also has two holiday homes and a canal boat on the South coast,
which are fully accessible.
REGIONAL MND ASSOCIATION
CONTACTS
Regional Care Development
Adviser
Paulette Riley
Paulette.riley@
mndassociation.org
07760 624657
Volunteer Development Coordinator
Annabel Lotsu
Annabel.lotsu@mndassociation.
org
07831 349409
Regional Fundraiser
Wendy Pawsey
Wendy.Pawsey@
mndassociation.org
07872 161672
Campaigns
Alice Fuller
[email protected]
07733 893108
QEF advises on mobility issues
How do we access these services or find out more information?
You can access the QEF service either by phone or email or you can be seen by one of the
occupational therapists at the MND care centres.
Please contact QEF directly:
0208 770 1151 or [email protected]
or email specialist occupational therapist:
[email protected]
or visit the QEF website:
www.qef.org.uk
Sarah’s fantastic talk is available to watch in full on the branch YouTube channel. Go to the
home page of our web pages:
www.mndassociation.org/getting-support/local-support/branches/london/west-londonand-middlesex-branch
Page 4
West London & Middlesex Branch
November 2016, Issue 98
Events
Branch Contacts
Janis Parks
Chair
[email protected]
07764 272255
@janisrparks
Mandy Garnett
Branch Contact
[email protected]
020 8971 2104
Emma Wilson
Secretary
[email protected]
Naomi Neville
Treasurer
[email protected]
Mick Stone
Carer Support Group
[email protected]
07812 983596
Anita Karunasaagarar
Branch Publicity Officer
Press, Twitter, Campaigns
[email protected]
07709 525 637
Alexandra Harris
Web pages
[email protected]
James Haslam
Newsletter Editor
[email protected]
Did you know that your
Branch Committee and your
Association Visitors are all
volunteers?
Branch support for carers
We recognise that caring for someone with MND can be hard. Our support group
for family and friends of people living with MND - the Carers’ Group – recognises
this. It is designed to facilitate the sharing of experiences and knowledge, while
giving mutual support in a warm and welcoming atmosphere. It is perhaps best
represented by comments we have received from carers, such as the following:
'I am very grateful that the group is there. The knowledge that you are not alone
makes such a difference.'
'I would describe those meetings as a gentle, safe space to meet other carers.
There is nothing quite as powerful as being in a room with people who share your
experience.'
'It's very welcoming and distinctly non-threatening.'
The group meets on the third Tuesday of each month (other than August and
December). Meetings start at 7:15 pm and we finish by 8.45 but the format is not
rigid and it's fine to join late or leave early. The next meeting will be held on
Tuesday 22 November. Following a break in December, the first meeting of 2017
will be on Tuesday 17 January.
The location is Oddfellows Hall, 15 Parkshot, Richmond, TW9 2RT, which is a few
minutes’ walk from Richmond Station and the many associated bus routes. There is
free parking nearby.
If you are potentially interested and/or would like more information, please contact
Mick Stone, MND Association Visitor via email at [email protected] /mobile 0781
298 3596.
PLEASE NOTE THAT THE NEXT CARERS’ GROUP MEETING WILL BE HELD ON
TUESDAY 22nd NOVEMBER, NOT THE 15TH AS PREVIOUSLY ADVERTISED
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West London & Middlesex Branch
November 2016, Issue 98
Dates for 2017
The dates for the branch’s open meetings next year have been agreed. Please put
them in your 2017 diaries now:
Diary dates 2016
2016 Open Meetings
Sunday:
27 November,
Christmas Party
2017 Open meetings
Sunday:
12 March, Branch AGM
11 June
17 September
3 December, 2017
Christmas Party
Sunday 12 March: Branch AGM and we’re delighted to announce that our guest
speaker will be Chris James, MND Association Director of External Affairs. Chris will be
talking, among other things, about the Association’s campaigning and awareness
activities, as well the possible impact of Brexit on people with MND.
a
Sunday 11 June
Sunday 17 September
Sunday 3 December: Branch seasonal party
All meetings will be held at St Paul’s Brentford, our usual venue.
Watch out for news on speakers for our June and September meetings in future issues
of our newsletter.
Please also note that our annual Bushy Park Walk will be held on Sunday 16 July 2017,
with the walk starting at 10.30, followed by the usual amazing buffet lunch, raffle and
auction. It’s never too early to give this date to friends and family!
2016 Carers’ Support
Meetings
Tuesday:
22 November
2017 Carers’ Support
Meetings
17 January
21 February
21 March
18 April
16 May
20 June
18 July
19 September
17 October
21 November
Bushy Park Walk
Sunday 16 July, 2017
2016 Walk was a great success
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West London & Middlesex Branch
November 2016, Issue 98
Information
Tips and hints
Our Branch Contact, Mandy has sent us the following ideas, which we hope will be
useful to you.
This is a regular feature of our newsletter; if you would like to see all the Tips and Hints
we’ve published in the past, go to the Information section of our web pages:
www.mndassociation.org/getting-support/local-support/branches/london/westlondon-and-middlesex-branch/information
Selfie Stick
Selfie sticks can be useful for people with MND. Firstly, they
can take pictures when you are out and about and secondly
it acts like a handle for your phone so it is easier to find and
use.
Curly Toes
Curly toes can be painful. Try using a yoga toe
spreader for some relief. Check with your OT first.
Thinking of arranging an
event to raise money for
the branch? If you need
any help or advice,
please contact Regional
Fundraiser, Wendy
Pawsey
Email –
Wendy.Pawsey@mndass
ociation.org
Phone – 07872 161672
Would you like to share
an opinion, letter, story
or idea with our
readers? Email us at
[email protected]
Hot food tastes better
Eating can be a slow process but don't let cold food
put you off. Food warming bowls are a great way to
keep food warmer for longer. They can be bought at
camping stores or on Amazon.
Carers need hobbies
Carers need to enjoy something for themselves as
caring for someone with MND is very physically and
emotionally draining. Our branch is a big supporter of
'me time'. Try a local yoga class, walking group or even
join a painting class. You are a more patient carer if
you take time out to do something you enjoy. Contact
our Branch Contact, Mandy Garnett, to discuss ideas
and our branch could even help with funding.
And don’t forget our monthly Carer Group meetings,
another form of ‘me time’ spent with others who
understand the challenges of caring.
Disclaimer: These hints are to be used with common sense and we do not take any
responsibility or liability if they do not work for you. We do not have any relationship or
make profit from recommending any brands.
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West London & Middlesex Branch
November 2016, Issue 98
Teaching professionals of the future
Paulette Riley, Regional Care Adviser,
reports
I was asked by one of my Association Visitors
if I would be happy to allow a student from
Cambridge University to shadow me for a
day, so she could learn more about MND as
part of her Degree in Medicine.
With my manager’s permission, and my
experience with being a practice supervisor
with social work students in my previous role,
I was ready to set up the shadow day.
We met and the student told me about her
course, and I told her about the MND
Association and my role. We arranged for the
shadow day to be a couple of months later,
and I would arrange a suitable agenda for the
day. The student had to sign a confidentiality
agreement to ensure that information she
received was kept confidential and anything
written for University would be anonymous.
The day would consist of a visit to a person
with MND and attending an MND MultiDisciplinary Team (MDT) meeting.
The day arrived and I was informed that the
gentleman was not at home, but had been
admitted to hospital the previous week, and
his social worker agreed that we could visit
him there.
When we arrived, he was pleased to see us.
He had not had any visitors, as he lives alone,
with no family close by. We talked about his
stay in hospital, his circumstances and the
fact that he was keen to return home and I
answered the questions he had. We thanked
him for his time and left.
We sat and reflected on the visit, with the
student talking about the fact that we had
time to talk to this gentleman and listen to
him, which made him feel supported.
We then attended the MDT and there was an
OT, Physiotherapist, Speech and Language
Therapist, Palliative Care Nurse and an
Association visitor in attendance. The
meeting went as it usually does, with the
patients at the centre of the discussions and
various referrals being made between the
professionals around the table, and us, the
MND Association, very much a part of the
team and the processes.
After the meeting, we had time to reflect
again. The student said that it was good to
see things from both the patient’s and the
health and social care professional’s point of
view, and how this MDT worked well,
especially as we had discussed the gentleman
we had visited.
During the day, the student witnessed my
juggling calls on the telephone and replying to
emails when I had a moment.
We both came away with a sense of
accomplishment – the Student learning about
the MND Association and my role and
gathering information to take back to her
university to write about her experience; and
with me thinking how good it was to impart
my knowledge to the Health and Social Care
professional of the future, who will be
responsible for providing good patient care in
general and who knows, hopefully some
patients living with MND.
Paulette – speaking with her ‘shadow’?
Continued over the page
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West London & Middlesex Branch
November 2016, Issue 98
Teaching professionals of the future
The student said: “Attending the MDT
meeting really opened my eyes to the many
different issues faced by an individual with
MND and their family, as well as the
incredible efforts of various NHS and MND
Association staff members to ease the
burden of this awful disease and guide the
affected along its inevitable journey. What
impressed me about the MND Association
was its commitment to each and every
patient with MND in this country; they work
tirelessly to
ensure that they can help each of those
affected by MND in a way that suits them.
Most importantly, the Association provides a
personal support network for those afflicted by
this disease.
“Emotional support is a vital, often
undervalued, component of care for those
affected by MND and unfortunately cannot be
provided by the NHS to a suitable standard.
This is where the MND Association's impact is
unique and boundlessly powerful."
Campaigns
Campaigns Report
From Branch Campaigns Contact, Anita Karunasaagarar
For those of you who are unfamiliar with
the latest MND Association campaign,
‘Championing the Charter’, it’s an
initiative to reach out to your local
councillors and encourage them to
‘adopt the charter’. The result of this will
hopefully be a synergistic partnership
where we can efficiently work together
to ensure that the council is striving to
minimise problems faced by people with
MND, and their families living within
their area.
We have received positive responses
from a few councillors in the branch area
who have either been personally
affected by MND, or they have had
previous knowledge of the branch and
what we do.
As is usually the way with these things,
arranging meetings has been challenging
but, thanks to the contacts made by
branch member Julia Mepham, we have
finally secured a meeting with
Hillingdon, the outcome of which will be
determined after this newsletter has
gone to print. Hopefully, my update in
the New Year will come bearing good
news of a Councillor on his way to
convince his council to ‘adopt the MND
charter’ and work with us to provide
access to information and services for
those of you in Hillingdon.
If you’re in Ealing and Richmond, you
might like to know that we’re still
persevering and we’re expecting a
breakthrough soon.
For more information on the campaign,
and information on how to get involved,
please visit the MND Association
website.
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West London & Middlesex Branch
November 2016, Issue 98
Fund Raising
Join our Fund-Raising Group
A chance to have fun while raising funds!
Regular readers may remember reading about the success of the branch’s Fund
Raising Group, which has organised numerous events and raised lots of money and
awareness. After a short break, this group of our younger volunteers is now starting
up again and looking for new members.
The group’s style is informal and, if you’d like to have some fun, while helping the
branch, why not join them? If you’re interested, please send an email to Sarah at
[email protected].
The fund-raising group preparing for a successful games night last year
Branch members run Royal Parks Half Marathon
The branch has two incredible members, who regularly
raise funds for the MND Association.
You will have read in the past about Cathy Haynes
extraordinary sporting feats, which include cycling,
marathon running and triathlons. For the Royal Parks
Half Marathon, she pulled together a team of 45 –
Linehan’s Lineouts - to run with her and husband
Duncan. Together, the Lineouts raised an amazing
£76,000 plus Gift Aid.
Cathy, centre, with husband Duncan and sister Jilly..
and yes, Cathy and Duncan did run in those outfits!
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West London & Middlesex Branch
November 2016, Issue 98
Branch members run Royal Parks Half Marathon
Maxine Dimmer is another amazing athlete and fund
raiser. Since 2014, she has taken part in, and
organised, several events and to date has raised over
£21,000 for the Association. She will be adding to
that total in November, when she will be welcoming
over 400 guests to a Charity Dinner in Windsor!
Maxine celebrates her half marathon
Requesting support from the Branch
Important note for people with MND and their families
The funds raised by the Branch are primarily used to provide practical help and
support to people living with MND in our area*. This support is provided in
accordance with national guidelines set by the MND Association, which relate to
the range of items and services we can help fund, the maximum contribution we
can make per item, and the maximum per annum for an individual. Within these
guidelines, in many cases we are able to fund the entire cost of a piece of
equipment or service that can make a real difference to people’s lives. We can
also award grants to carers and young people directly affected by MND.
The Association, and therefore the Branch, does not fund items where there is a
statutory requirement for them to be supplied by health and social services,
although we might step in if the delay in receiving this funding is unacceptable.
Please note that most items of equipment and adaptations require the
recommendation of a health or social services professional. If you are hoping that
the Branch will make a contribution, you are strongly advised against making any
purchases or embarking on any adaptations without ensuring you have the
necessary recommendation from a health or social services professional. In any
event, it is wise to obtain their input before incurring any expenditure, no matter
who is to fund, to ensure that it is appropriate to your ongoing need.
* funds raised may also go towards research and other services.
Continued over the page
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West London & Middlesex Branch
November 2016, Issue 98
Requesting support from the Branch
Please note that only in exceptional circumstances can we fund retrospectively
and then only three months after the event, so do contact us before incurring any
cost. Once requests have been received by the Branch Committee or directly by
the Association, they are dealt with as quickly as possible.
You may not be aware that we are only able to provide this support thanks to
fundraising done by the Branch and others on our behalf. The Branch does not
receive any funds from the MND Association or the State. If you, friends or family
are thinking of raising funds for MND, please remember this and help us to help
others living with MND in your local area, as we may have helped you. We are
always happy to discuss ways in which you might be able to raise funds and to
offer support.
Finally, should any equipment no longer be required, please contact Branch
Contact Mandy, to see if it could be used to help someone else.
We know how grateful many of our members have been for our support in the
past. Why not help us to help the next family who has to cope with this
devastating disease.
Branch Committee
No longer need or wish to receive this newsletter and our emails?
To unsubscribe, please do one of the following, in all cases giving your name
clearly:
•
Phone / leave a message for Nick on 01306 881761
•
Send a text to 07761 757790
•
Email [email protected] (include WLMND in the heading)
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West London & Middlesex Branch
November 2016, Issue 98
Guidelines for online fundraising
We are very grateful to everyone who raises money for the Branch. Many of you
choose to do this via your own Just Giving or other online sites. In order to ensure
that the money comes through to the Branch, it is important that you please follow
these simple guidelines:
1. When setting up a fundraising page, the fund raiser (that’s you!) can only
choose to raise money for charities registered on the online giving website, in our
case this is the MND Association.
2. The online site will then send the money to the MND Association national
office. To ensure that it is transferred on to the Branch, you need to let Wendy
Pawsey, the Association Regional Fundraiser, know in writing that you want the
money to come to the Branch. This can be done by email to
[email protected]. Please copy our Treasurer, Naomi Neville
([email protected]) into your email, so that she can follow-up for us.
3. Please note that it must be you who makes this notification; the Branch cannot
do it on your behalf.
4. Please email Wendy at the same time as setting up the site, so that there is no
confusion or delay.
5. You also need to specify that you are fundraising for the Branch within the
main body of the text on your fundraising page, when it is set up. This is because,
by law, all donors must be fully aware, at the time of giving, if the money they are
donating is to go to a specific branch.
If you have any questions or concerns about this, please don’t hesitate to call or
email Janis. Thanks for following this process and many, many thanks for all your
support. The money you raise will primarily be used to provide practical help and
support to people living with MND in our area and may also go towards research
and other services.