Helpline: 0800 111 4324

LEEDS
& DISTRICT
Autumn 2012
Branch Newsletter
White Rose
Research
MS Chat
Helpline: 0800 111 4324
Registered Charity No: 1139257
Contents
This newsletter is available
From The Chair
3
by either:
Fundraising News
4
* Post/email (contact the
Forthcoming Events
5
newsletter editor -see back
Christmas Social
6
Activity Sessions
7
Research
8/9
Get Active for MS
10/11
Appealing an ESA Decision
12/13
page)
* Download at
www.mssociety.org/leeds
IT Can Help
13
Cloverleaf
14
Just For Fun!!
15
Financial Assistance
16
Support Officers
17
Socials
18
MS Chat
19
London.
Contact Numbers
20
NW2 6ND
The views expressed in this publication
are individual and are not necessarily
the view or policy of the charity and it’s
supporters.
We do not endorse
any goods or services that may advertise in this publication.
2
The Multiple Sclerosis
Society of Great Britain
and Northern Ireland
MS National Centre,
372 Edgware Road,
Staples Corner,
Tel: 020 84380700
Visit the website:
www.mssociety.org.uk
FROM THE CHAIR
To all Members
I would like to thank all our supporting volunteers. Your help
and support is vital and has help us raise over £ 5,000 this
year. This will pay for transport, running the activity sessions
and MS Chat and local grants.
We are in partnership with the White Rose (Land Securities),
working alongside Wakefield Branch, raising funds for local
branches.
We have coming up Trick or Treatment on Saturday & Sunday 27th/28th October. We’ll be at the White Rose creating
awareness and fundraising. If you can help bob down or ring
the helpline - 0800 111 4324.
We have several more events coming up so please, spread
the word and help support your local branch.
Jan
E’ Newsletter!!
If any member would like to receive their newsletter by email and help your local branch to
save money, please contact Kirsten giving your details -
[email protected]
3
Fundraising News
Donations
The following have kindly made donations to the
branch:

Mrs Hutton

Hobbycraft - Thank You for all your support
over the past few years. It has been very much
appreciated!!!
New Publications available
Just diagnosed (Third edition, July 2012)
The latest edition includes a revised summary of
disease-modifying drugs.
Fasting and MS (factsheet) – download only
Minor updates have been made to this factsheet which
looks at considerations for anyone with MS who might
want to fast.
All MS Society publications, audio recordings and
DVDs are free to everyone.
There is a new publication booklet available listing all
the free booklets etc., Please ring for a copy - 0808 800 8000
4
Up n Coming Events
& Collections
Saturday 27th & Sunday 28th October
Trick or Treatment @ White Rose Shopping Centre
- Fundraising event and general awareness
Saturday 17th November
Empire Music Gig @ Empire, Leeds Bridge, Leeds
City Centre
- Live music event raising funds
Thursday 22nd November
Leeds Train Station
- Fundraising event
Thursday 29th November & Saturday 1st December
Music for MS
- Local music talent; soloists, duets, bands, choirs
etc raising funds and general awareness
5
Christmas Social
Monday 10th
December (7-9pm)
@ Belle Isle WMC
This year’s Christmas social will be
FREE OF CHARGE to all members.
Please ring the helpline to confirm your
place
-
0800 111 4324
T
E
F
F
BU
RAFFLE
BINGO
MUSIC
6
M S Society Activity Sessions are now
available for all members. Regardless
of sticks or wheelchairs there’s an
activity suitable for everyone.
Every two weeks from
4th October 2012
11am to 12 noon
“Don’t Let Fear
Stop You From
Having FUN!! “
Armley Leisure Centre
Carr Croft, Armley, Leeds,
LS12 3HB
£ 4.00 including transport.
For information, please ring
07895515471
7
RESEARCH
News
Research to explore effectiveness of group therapy for
MS
14 group
Sept. 2012
Research is due to start soon which will look at how effective
therapy can be in helping people adjust to multiple sclerosis.
The work will be carried out at the University of Nottingham and will
run from October for three years.
This project builds on previous research funded by the MS Society. It
found that group therapy can improve low mood in people with MS.
The aim now is to find out if it is more effective than individual therapy,
as this could lead to better treatments in the future.
Adjusting to MS diagnosis
Adjusting to an MS diagnosis and coping with changes in MS can be
difficult. Data from the previous studies shows that around half of people with MS experience anxiety or depression.
Professor Nadina Lincoln is leading the study:
“With the original research we got the feeling that there was something
valuable about getting people together to talk. The aim now is to look
at the group process and find out if we were right. Is it being in a group
that is important?”
A way to share coping strategies
Adrian Turrell was involved in the original research:
"People with MS are all affected differently.
“Despite this variation, sitting around a table with fellow sufferers and
sharing coping strategies, being honest about the way you feel, feeling
that you're not on your own, is immensely comforting, as well as giving
you some practical ideas as to how to deal with your symptoms.”
8
Botulinum toxin (known as Botox) has been licenced by
the MHRA to treat people with neurogenic detrusor overactivity (or overactive bladder symptoms), commonly experienced in people with MS.
The treatment is specifically for people who have failed on existing treatments, like anticholinergics.
Bladder problems affect around 75% of people with MS at
some point, and while Botox will only be responsive in some,
its licensing is a welcome step in increasing the variety of treatment options that are available to people.
How Botox helps
Botox is injected into the overactive detrusor muscle, helping it
to relax, and reducing urinary:
 frequency (when people need to urinate more often than
normal) and
 urgency (when people are unable to ‘hold on’).
It is expected that some people will still need to self-catheterise
while using the treatment.
Funded research
The MS Society has funded the most research on bladder problems
out of any symptom, mainly because it affects so many people and
can severely affect quality of life.
Ed Holloway, Head of Care and Services Research at the MS Society, said:
“The MS Society funded one of the earliest trials using Botox for
bladder control in MS, so we’re delighted to see it’s now a fully licensed treatment.
“Continence issues are extremely common in people with MS
and this treatment could greatly improve the quality of life for
thousands of people in the UK.
“We hope that licensing Botox will make it simpler and fairer for
people with MS to access the treatment, and we’d like to see it
available to those who could benefit.”
9
Get Active for MS!!
Land Securities (who own White Rose Centre & Trinity)
along with the MS Society and Leeds & Wakefield Branches
are hosting many fundraising and awareness events over
the next few months (til March
2013).
The first event we helped to
host was ‘Get Active for MS’
which raised over £1600.
Many people participated on either the rowing machine or
cycle bikes . ..almost hitting our target of 252 miles!!!
10
It was a fabulous weekend and
helped raise awareness of MS and
the local branches.
Looking forward to the
next event and welcome
any new and existing
volunteers to help at the
event.
11
Appealing an ESA decision
Less than 50% of ESA claims are successful initially, but
about 40% of appeals are successful. Where the claimant is
represented, that figure rises to 60%. If you think that the
decision about your benefit claim is wrong, it is well worth
appealing.
You have one month from the date of the decision to ask for it to be
explained or reconsidered or to appeal against it.
How to appeal
Fill in form GLA24 at the back of the leaflet 'If you think our decision is
wrong' - you should get a copy of this with your decision letter.
Ask for a copy of the report from your assessment, and an
explanation from the office who made the decision.
Make sure you ask for your ESA to be paid in the interim (as this
does not always happen automatically).
Check the medical report carefully:
* Has everything you said been put down? Has anything been misrepresented?
* Is anything in the report inconsistent or wrong?
* How long did the medical take? Did you get the opportunity to say
everything you needed to?
* Do you think you have been awarded the correct number of points
for all of the descriptors?
* Ask your healthcare professionals (GP, MS nurse, neurologist
or OT) to write a letter to support your appeal, explaining how
you meet the descriptors and where you should have been
awarded more points.
12
If your appeal goes to a tribunal take a friend, family member
or independent advocate with you. The Citizen’s Advice
Bureau or Cloverleaf can help.
Need Help with IT???
IT can Help is a volunteer network providing FREE IT support
to nearly 2000 disabled people each year in the comfort of their
own homes, or at residential or day-care centres. Problems
they tackle include installations and set up of systems, internet,
email and accessibility settings.
Formerly the responsibility of the British
Computer Society, IT Can Help has
now joined AbilityNet to continue with
its provision of quality IT help to disabled persons.
If you need help with IT or just want to
move into the digital age, they can be contacted:

By Freephone (and textphone) - 0800 269545

By email to - [email protected]
You can also find out more by visiting their website at:

ww.abilitynet.org.uk

www.itcanhelp.org.uk
13
0800 849 3831
Cloverleaf Advocacy provides independent advocacy services for people with mental health needs, people with
learning disabilities, people with physical and sensory impairments, acquired brain injuries, carers and older people.
The advocacy services aim to support people in/at risk of
being in oppressive situations to have their views heard and
responded to appropriately by significant others e.g. health
and social care services.
The services provide a combination of one-to-one specialist, confidential advocacy and open access advocacy
groups, both in hospital and community settings.

We are an independent organisation.

Our services are free.

We are a not for profit organisation.

Our services are confidential.
An advocate can support with issues such as:






Community care assessments and reviews.
If someone needs help to understand how community care
works.
If someone needs support in making a complaint to health
and social care services.
Decisions about moving into or out of residential care.
Support at meetings with professionals.
Accessing information about your disability or condition.
14
Just For Fun!!!!
Across
Down
1. Chronicle (7)
5. Proverb (5)
8. Graphic (5)
9. Cautionary advice (7)
10. Help grow and develop (7)
11. Free of impurities (5)
12. Neckband (6)
14. Systems of principles (6)
17. Hackneyed (5)
19. Facets (7)
21. Gullibility (7)
22. One of the senses (5)
23. Larceny (5)
24. Unprocessed or
15
1. Oasis (5)
2. More than two or three but
not many (7)
3. Of long duration (3)
4. Gaped (6)
5. Fruit (7)
6. Stage whisper (5)
7. Machines (7)
12. Piece of furniture (7)
13. Complaint (7)
15. Tooth (7)
16. Ravine formed by a river (6)
18. Racket (5)
20. Hex (5)
22. Toddler (3)
FINANCIAL ASSISTANCE
for PEOPLE WITH MS
Depending on resources, Leeds Branch can sometimes help
with grants towards the cost of items to improve the lifestyle
of those with MS. The branch will consider applications to
help buy equipment in the following categories (subject to
maximum limits).
Home Adaptations
Essential Home Repairs
Car Adaptations and Motability Deposits
Wheelchairs and Scooters
Beds and Chairs
Respite Care
Furnishings, Flooring and Domestic
Appliances
Removal Costs
Clinical Aids
Applications will not be considered if you
have more than £16,000 in savings. Individuals can apply to the branch once every 12
months.
16
The above list is not exhaustive but if your need is not listed,
please contact Patrick Boynton on 0113 232 0143, who
will be happy to discuss your needs in complete confidence
and provide you with an application form. The form can also
be downloaded from the National Office Website at
www.mssociety.org.uk
Support Officers
Did you know your local MS Society branch can provide specific
support for you and your family?
We can talk to you over the phone
on our confidential helpline 0800 111 4324.
Our CRB-checked male and female volunteers can
also visit you in your own home to discuss your
need. Or we can explain where you can find information for yourself. We can provide booklets about
symptoms, short breaks, work and benefits to name
but a few – we will do our best to help you.
The clearer you are about what sort of help you think
you need, the easier and quicker it could be for us to
help you. If we think we are not the most knowledgeable people to help, we will use our contacts to ‘find
a man, woman or organisation who can’!
17
Monthly Social @ Belle Isle W.M.C.
FOR TRANSPORT, PLEASE RING -
0800 111 4324
Monday
8 October
Monday 12 November
Monday 10 December—Xmas Party!!
NO SOCIAL IN JANUARY
7—9pm
(Belle Isle WMC, Belle Isle Road, Leeds. LS10 3PE)
18
M/S CHAT
September Diary Dates
Friday
14th 12 - 2
Friday 28th
12 - 2
GET TOGETHER AND
MAKE NEW FRIENDS,
October Diary Dates
Friday
YOU’LL BE AMAZED
12th 12 - 2
Friday 26th
TO FIND YOU’RE NOT
ALONE !!!!!
12 - 2
November Diary Dates
Friday
9th
12 - 2
Friday 16th
12 - 2
Friday 30th
12 - 2
December Diary Dates
Friday
14th 12 - 2
Held at:
Centre Integrated Living,
Armley Ridge Road, Leeds.
LS12 3QH
PLEASE NOTE:
For more information
please contact:
NO MS CHAT
IN JANUARY
07895 515471
19
Contact Numbers
OTHER
MS Society Leeds
Helpline
0800 111 4324
MS Nurses
0113 392 8117
MS Community Team
0113 3055185
MS Society National
Helpline
COMMITTEE
Jan Lambert
Chair
Rachel Coffey-Brittain
Secretary
Kostas Kassimatis
Ade Adesanya
Treasurer / Assistant Treasurer
Patrick Boynton
0808 800 8000
0113 2320143
Grants [email protected]
DIAL
Caroline Adams
0113 2143630
Support Officer
Benefits Enquiry Line
Kirsten Morley
0800 88 22 00
Direct Payments
0113 2143654
Adult Social Care
0113 222 4401
Seacroft Hospital
0113 2648164
St. James Hospital
0113 2433144
West Yorks Therapy
Centre 0113 2504528
Newsletter
kirstenmorley@
yahoo.co.uk
Joe Waldron
Health & Safety Officer
Judy Cunnington
Committee Member
VACANT— can you help????
Website
VACANT— can you help????
Fundraising Officer
Any committee member can be contacted
via the helpline - 0800 111 4324
All 20
committee members are CRB
checked.