1. society

The Birmingham Multiple Sclerosis Society Newsletter
Registered Charity numbers 1139257, SC041990
Issue 37 Autumn 2013
HOW TO CONTACT US:
by phone 0121 2465876 ← NOTE NEW NUMBER
by email [email protected]
by post
MS Society Birmingham Branch,
399 Heath Road South, BIRMINGHAM B31 2BB
our website is at: http://www.mssociety.org.uk/birmingham
From the Chair
T
he Birmingham Branch is moving along nicely. We are still in the process of
raising our profile, which at the moment is not as high as we would like it to
be. A lot of people whose lives have been touched by MS are not aware that we
exist. This is a matter we are in the process of addressing by organizing
awareness events.
Christmas is not too far away now. You will find details of our Christmas lunch
and Panto arrangements on pages 6 and 7. Our lunch this year is a celebration
of 60 years of the MS society, and we are planning entertainment to go with
it. Please book in good time, as the number of places is limited.
The fundraising event which was held at the Tesco's store Spring Hill Hockley
was a good day. I would like to thank everyone who took part, especially Sandy
Lamb for organizing and coordinating the day. We raised nearly £250.
Our Facebook and Twitter pages are now set up and running. For those of you
who use these social media tools, why not add us to your friends list? This would
be a good way of raising our profile as your friends would see all posts.
We continually strive to improve the services we offer and with the new additions
to our committee and volunteers, we hope to offer a service that is professional
and informative. All comments or feedback would be gratefully received.
Laurel Mcleod
All views expressed are the authors’ & not necessarily those of the MS Society.
PIP replaces DLA in West Midlands - but at what cost? By Fraser Tennent
S
ince its contentious introduction in April this year, the successor to the Disability
Living Allowance (DLA), the Personal Independence Payment (PIP), has divided
opinion between those who believe it’s an unfair, cost-cutting measure that targets
those most in need, and those who feel it’s a long overdue mechanism for flushing
out dishonest claimants.
In the West Midlands, PIP replaced DLA for new claims in June 2013. PIP
requires disabled people to meet a tighter eligibility criterion via a controversial new
system of assessment.
Bizarrely, the Department of Work and Pensions (DWP) has seen fit to announce
that 600,000 disabled people will lose out on support by 2018 – a potential loss of
between £20.55 a week and £131.50 a week – as a result of the new system.
Overall, this equates to a loss of £2.62 billion pounds of financial assistance.
Explaining the need for the new system, Esther McVey, Minister for Disabled
People, said: “DLA is an outdated benefit introduced over 20 years ago and was very
much a product of its time. PIP has been designed to better reflect today’s
understanding of disability, particularly to update our thinking on mental health and
fluctuating conditions. This will ensure the billions we spend on the benefit give more
targeted support to those that need it most.”
Many disability organisations have expressed their disbelief as to how the
Government has been able to say how many people will lose entitlement as a result
of the changes as many thousands of claimants are yet to be assessed.
Richard Hawkes, Chief Executive of the disability charity Scope, said: “Life costs
more if you’re disabled, but this year with living costs spiralling and income flat-lining,
disabled people are really struggling to make ends meet.
“What’s the Government’s response? It is cutting the very financial life-line
designed to help them meet the extra costs they face. DLA needed reforming and
could be better targeted. But disabled people believe this reform is just an excuse to
save money.
“It doesn’t help that the Minister is able to predict exactly how many disabled
people will receive support before they have even been tested and doesn’t take into
account all the barriers that disabled people face in daily life. This means the support
won’t be targeted to those that really need it.”
Echoing Scope’s view that the new system is merely an excuse to save money is
Dr Aaron Reeves of the University of Oxford, co-author of a new study which analyses its likely impact on people with disabilities. He said: “Recent reports indicate that
austerity is likely to widen health inequalities. There can be a direct effect through
cutting effective treatment programmes. Then there are the indirect effects of
increasing unemployment, poverty, homelessness and other socio-economic risk
factors.
“Imposition of a 12-month time-limit on non-means tested disability benefits will
reduce payments by up to £4,212 per year for approximately 280,000 people. About
150,000 of these currently live in poverty and an estimated 50,000 adults are
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Cont from previous page
estimated to be at-risk of poverty due to these cuts.”
Amidst all this, further concerns have been raised that the PIP
assessment procedure – carried out by the private companies Atos
Healthcare and Capita - is deeply flawed and is likely to repeat the mistakes
made with the Work Capability Assessment (WCA), also carried out by said
private providers.
Indeed, the Guardian newspaper reported that the Department for Work
and Pensions was forced to provide additional support after a Government
Review found that WCA assessments carried out by Atos were of an
‘unacceptably poor quality.’
Speaking at the time of the West Midlands PIP launch in June, Claire
Nurden, Senior Policy and Campaigns Officer at the MS Society, said: “We
are seriously concerned that the change to PIP will have a devastating
impact on people living with MS and other disabilities who really need
support.
"Despite the government’s claims that the benefit is to help those in the
greatest need, we believe that it’s many of these people that will lose out."
"We want assurances that the assessment process will be as fair as it
can be – that means proper use of additional evidence and the abolition of
clinical exams that are currently set to be carried out by assessors who
aren’t properly qualified to do them.”
Nurden is also calling on the Government to look again at the mobility
criteria of the assessment after plans were announced to withhold disability
benefit from any claimant who can walk further than 20 metres, even if they
are making use of a walking aid. A letter signed by more than 10,000 people
and over 80 charities and organisations which calls for the abolition of the
20 metre rule has been sent to David Cameron and Nick Clegg.
Although at this stage it is a little too early to say what the differences
caused by the new PIP assessment procedure and criteria will be compared
to that for DLA, the DWP is expected to release (post-June) figures relating
to PIP decisions in November 2013.
And by then, presumably, Messrs Cameron and Clegg will have seen fit
to respond.
According to the the MS society, 45% of people with the progressive conditions MS,
cystic fibrosis, Parkinson’s and rheumatoid arthritis who put in an ESA claim in the
past five years were placed in the Work-related Activity Group, meaning assessors
believe they will be able to return to work at some point. Seven out of ten new
claimants with these conditions have also been reassessed two or more times on
the same claim. [editor]
3
COPING WITH THE COSTS OF MS - Financial
assistance from the Branch
T
he Branch may be able to provide grants for items needed as a direct result of MS,
if no health or social service funding is available. Over the past couple of years, we
have helped Birmingham people affected by MS with a variety of items, including
wheelchair, outdoor ramp, driving lessons, profiling bed, walking aid, car adaptation.
Requests for financial support, for people with MS, are considered against these
priorities: to facilitate independence, to enhance quality of life, and to prevent crises.
All requests are reviewed, in strict confidence, by the Branch Grants Sub-Committee.
In considering requests, the Branch does not discriminate between members and nonmembers of the Society. The Branch will consider requests for help with: home
adaptations and essential repairs, powered wheelchairs, scooters, communication aids,
furnishings, domestic appliances, car adaptations, personal development costs, and
some clinical aids. The Branch may be able to help with the cost of other items, but it
is advisable to consult the Branch Lead Support Volunteer before submitting an
Application Form.
Requests for help with respite care and short breaks and activities should be made to
the MS Society Short Breaks and Activities Fund, for which the Branch can offer advice.
Where possible, statutory funding, for example from local council or NHS, must be
sought before applying to the Branch. Retrospective applications, where the
expenditure has been incurred, an order placed, or a deposit paid, before applying to
the Branch, cannot be considered.
Applications, on the official Application Form, must be sent to the Birmingham Branch.
If the Branch is unable to offer the total amount involved, the form may be passed to
MS National Centre, for consideration by the National Welfare Grants Fund.
There are other conditions, including how much income/expenditure and savings the
family has.
For more information, in strict confidence, contact the Branch Lead Support
Volunteer (0121-246-5876, or text to 07746-130-806, or email to
[email protected]).
4
BRANCH ACTIVITIES—COME ALONG AND GIVE THEM A TRY!
Art and craft classes. Fortnightly Mondays 11 am - 1 pm. Next
meetings 21 October; 4,18 November; 2 December. £3 per session at
the Kings Heath Quaker meeting house, in Colmore Rd, Kings Heath,
B14 7PE . Contact Zoe on 0789 124 0627 for more details.
Exercise classes: Weekly on Fridays starting at 11.30 am at
Cocks Moors Leisure Centre, Alcester Road South...For more information
contact the branch on 0121 246 5876
North Birmingham exercise class. Second and fourth Tuesday of
the month. At Summerfield Community Leisure Centre, Winson Green
Road, Winson Green B18 4EJ. Classes are followed by coffee socials
and group meetings. For more information, please contact Cleo Reid
([email protected]) or any of the addresses on the front page.
Tai Chi exercise classes. These are now held
at the Kings Heath Quaker meeting house, in
Colmore Rd, Kings Heath, B14 7PE (opposite the
main entrance to Kings Heath park). Carers,
relatives and friends are all welcome. The cost is
£3 per session. Next sessions: October 19,
November 16. There will be no class in December.
Motomed machine. Queen Alexandra College in Harborne has a
disability-friendly gym with specialist equipment including a Motomed
machine for the use of people with MS. For details please contact
Gaby on 0121 680 8446. Please leave a message if she is not there.
ChuMS is an informal get-together for anyone affected by MS, which meets on the
second Saturday of the month from 2 - 6 pm at the Garden House pub on Hagley
Road. For more information please email [email protected] or join
Birmingham Chums group on Facebook.
If you need transport to any event, please contact our transport manager,
Chris Kyne, on 07900-152-666.
5
CARERS CORNER
C
Help the helpers
- is someone caring for you in need of support?
arers Together is an exciting new volunteering project, funded by the Big
Lottery Fund and delivered by TimeBank and Carers UK. The project offers
face-to-face mentoring to 70 carers in Birmingham, plus tailored online support to
300 carers across the country. It aims to reduce social isolation, improve emotional
well-being and help carers cope with the stress and strains of caring.
Drawing on its extensive experience of volunteer mentoring, TimeBank recruits,
trains and supports volunteers who have current or previous caring experience and
who would like to act as mentors to other carers. Mentors are able to share their
own experience and techniques that have helped them. Carers are matched with a
volunteer mentor to help them take a fresh look at their own situations and identify
goals .Mentoring enables carers to work through the difficulties they may be
experiencing and receive support, as well as signposting to other sources of help.
In addition to providing a mentor, Carers Together gives both its mentors and its
mentees access to specialist advice around benefits, securing support and legal
issues surrounding being a carer. This advice is provided by Carers UK who have
a long history of supporting carers across the country.
Carers Together doesn't work unless those who have successfully cared for
someone volunteer to be a mentor. TimeBank provides volunteer training and
covers expenses, and we know that mentors will find mentoring a deeply
rewarding experience. Although a carer may not have thought about caring as
anything other than something they wanted and needed to do, they actually have a
very detailed skills set and knowledge base that someone else could really benefit
from! Becoming a mentor is a way to get this recognised as well as an excellent
bridge back into work.
We are already receiving feedback about how helpful the project is. If you know
someone who could give their time, or someone who needs support, please
encourage them to contact the project either through the website at
www.timebank.org.uk/carers-together or by emailing [email protected]. If
they would prefer to speak to someone they can call 0121 236 2531 and ask for
Stephen or Halinka.
Project Co-ordinator
Carers Together
[email protected]
6
FOR CARERS and ALL AFFECTED BY MS
Need someone to talk to?
S
pokz People community interest group are a non-profit
organisation in Birmingham providing 1 to 1 and group
support including sex & relationship support for adults with
physical disabilities, partners, carers and parents.
You may have seen them at the recent ‘Below the Belt’ event,
where Mel Halacre, their managing director, briefly spoke about
how MS can affect sex and relationships.
If you are living with MS and would like to get more out of your
life and relationships, then their support could help with:
Coming to terms with the diagnosis
Isolation
Relationships and sex
Pain or fatigue
Self-esteem or body image
Confidence and assertiveness skills
Being independent
Feelings of guilt, anger or resentment
Feeling anxious or low
Risk taking
Dealing with difficult people and
situations
Pain (we have a pain support programme starting 24th
September)
Costs:
Their online forum and helpline are free. You can also join their
Facebook page or follow them on Twitter for free support and
updates.
The costs for 1-2-1 support varies from £5.00-£40.00 per
session depending on your income.
Groups are from £3.00-£10.00.
Spokz People are partially funded by Birmingham City Council,
which means you can access their services at low cost (e.g.
£5.00 if you are on benefits) if you pay your council tax to
Birmingham City Council.
If you are in financial difficulties, and have already reduced nonessentials like tv packages, Spokz may be able to approach your
MS Society branch for a contribution. If you have Direct
Payments you can also use this to pay for our services.
Find out more:
Phone 0845 25 77 496, email [email protected] or go to
www.spokzpeople.org.uk
7
Booking for Christmas lunch (note new venue this year)
SUNDAY 8 DECEMBER 2012, at 1.00 p.m.
PLOUGH AND HARROW, HAGLEY ROAD, EDGBASTON, B16 8LS
Lunch is £12.50 for two courses or £15.50 for three courses per head –
Please select from the menu and complete the form below, enclose cheque
(made out to “MS Society, Birmingham Branch”) for the total amount, and send to:
Birmingham Branch, MS Society, 399 Heath Rd Sth, Birmingham B31 2BB
Bookings must be received by 9th November.
Tickets will be posted out early in December. As space is limited this year, they
will be allocated on a first-come -first-served basis. If you have any queries please
ring (0121)2465876. Please keep a note of your choices and bring it with you!
-------------------------------------------------------------------------------------------------No OF PERSONS …......@ £12.50; ………[email protected]. TOTAL PRICE: …................
MENU:
please indicate selections & number of people ↓ :
Caramelised red onion & Gruyere cheese tartlet, soft salad,
mustard vinaigrette
(
)
Plough and harrow prawn cocktail, granary bread & butter (
)
Smooth chicken liver parfait, fig chutney & spiced toast
(
)
Lightly Spiced Parsley & celeriac sop, Apple & crème fraiche,
herb croute
(
)
*******************************************************************************
Turkey & pancetta parcel w. apricot & chestnut stuffing,
roast gravy
Traditional roast beef aged 21 days, yorkshire pudding, gravy
Pan-fried fillet of brixham sea-trout, orange braised fennel,
white wine & dill cream
Smoked aubergine & roast pepper cannelloni, sauce arrabiata
*******************************************************************************
Christmas Pudding & brandy sauce
Truffled chocolate torte w. blackberry compote & clotted
cream
Glazed lemon tart, Chantilly cream & raspberry sorbet
Selection of local & continental cheeses w. walnut bread &
winter ale chutney
**************************************************************************
(
(
)
)
(
(
)
)
(
)
(
(
)
)
(
)
Freshly filtered Coffee and chocolate mints
NAME:
…......................................................................
ADDRESS:
…...............................................................
…......................................................................
…......................................................................
PHONE NUMBER (in case we need to contact you) …...................................
Transport may be available – please phone Chris on 07900-152-666)
8
PANTO
PANTO
PANTO
We have reserved a number of seats and wheelchair spaces for the matinee of
Snow White and the Seven Dwarfs
at
2.30 pm on Saturday January 25 2014
All seats will be allocated on a first-come first-served basis.
Please complete the form below, enclose a cheque (made out to “MS Society
Birmingham Branch”) for the total amount, and send to
Birmingham Branch, MS Society,
399 Heath Rd South, BIRMINGHAM B31 2BB
Applications must be received by 16 November. Tickets will be posted out
early in January. If you have any queries, please phone (0121) 2465876
--------------------------------------------------------------------------------------------------------Panto Booking
Please state number required
↓
Wheelchair space for person affected by MS + carer’s seat (2 persons) £29.40( )
Seat for person affected by MS plus carer’s seat (2 persons)
£29.40
(
)
Seat for non-carer (per person)
£14.70
(
)
TOTAL _________
NAME ____________________________________PHONE No. _____________
ADDRESS________________________________________
_________________________________________________
_________________________________________________
Transport may be available: please phone Chris on 07900 152 666
9
FROM THE MS SOCIETY
I’ve got nothing to lose by trying it
by Sorrel Bickley .
T
hese days information about our health is all around us and can be accessed easily
on the internet. In many ways this is a positive thing, but it can make it more
difficult to find reliable facts, especially when it comes to unproven treatments.
We often see ‘amazing benefits’ and ‘miracle cures’ in the headlines, but how can we
get the full story? ‘I’ve got nothing to lose by trying it’ is a new guide from Sense about
Science, which aims to help people find reliable information about unlicensed treatments. It was put together after collaboration with patients, doctors and carers, as well
as other medical charities including Cancer Research UK and the Alzheimer’s Society.
The MS Society is proud to support this guide, which includes tips about the potential
financial, health and emotional costs of untested treatments. Being aware of and
understanding the risks involved with unproven therapies is really important for
everyone.
Specifically the guide:






Gives practical advice to help patients examine the available evidence so that they
can weigh up claims and make informed decisions.
Explains what to look for in a news story about a medical breakthrough.
Explains how clinical trials work.
Explains what to look for on any website that promotes a new treatment.
Advises on participating in clinical trials.
Indicates where to find trusted sources of medical information.
Hidden risks
We know that many people affected by long term conditions such as MS find it
frustrating that available treatments aren’t able to provide the results they want, and
that it can be tempting to try out controversial or alternative treatments that promise
more dramatic results.
But it’s important to look for the scientific evidence behind these claims and to learn
more about whether or not these treatments are safe. Alternative therapies can
10
interfere with conventional medicines, and can also carry an emotional cost:
many people share their stories of being sold treatments based on ‘false hope’,
which have led to confusion and disappointment. Not to mention that many unproven therapies can be very expensive, with no guarantee that the money is
making a difference.
The new guide details how to spot information that might be misleading or that
makes unfair promises. Rita Baillie, who has MS, told us why this is important to
her:
“This matters to me because over the last 20 years I have been encouraged to try
so many expensive drugs or treatments. I would have done better to have a good
holiday. It is hope that makes us grab at straws. We need facts not dreams.”
Accessing new treatments
There are safer ways to access potential treatments. One option available is to
participate in a clinical trial. These can allow people to access new drugs a few
years before they might be commonly available. Clinical trials offer a way of
effectively testing the benefits and potential side effects of new treatments, and
although it often takes number of years for new treatments to be approved, it’s
crucial for all treatments to go through this process.
Participating in genuine clinical trials never requires making a payment, and more
information can be found at the International Clinical Trials Registry Platform
(ICTRP). You can also visit clinicaltrials.gov for a searchable list of all clinical trials
happening around the world.
Arm yourself with facts
A guide like this can help people question the information they find, and to make
their decisions based on the evidence available.
Other reliable information sources include NHS choices (www.nhs.uk) and the
UK Clinical Research Collaboration (www.ukcrc.org ), as well as the MS society
website (www.mssociety.org.uk).
It’s not easy to know what to believe, and everyone’s situation is different. But
once armed with the facts and evidence, it’s easier to make the choice that’s
right for you.
We acknowledge including part of a review by T M Pope of Albany Medical College.
11
If you have internet access …
then you might be interested in some of these MS and disability-related links:
http:///wwwmsssocietymorgmuk/oorus is an active forum with discussion of all
kinds of issues including, but not confined to, everyday living, new diagnoses,
caring, and young people.
http:///diaryooabenefitscroungermblogsp:otmcomuk/, (the description is ironic)
details the activities of a feisty disability rights campaigner
http:///disabilityrightsukmorg/ is a registered charity which offers guidance and
information on all aspects of benefits and publishes useful factsheets. Their
postal address is 12 City Forum, 250 City Road London EC1V 8AF, and their
phone number is 020 7250 3222 (line open Mon-Fri, between 10.00 and
12.30pm and 1.30 and 4.00pm)
http:s///wwwmgovmuk/browse/disabilities is a government site providing
information about your rights, benefits, carers and the Equality Act
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VOLUNTEERS WANTEDVolunteer jobs available – please apply !!
Branch Secretary:
Z
oe Berry been an excellent secretary for the Branch, but now she has to cut
down her activities and so this very important post is open.
The Secretary is a key position in the Committee. Responsibilities include
organising Committee meetings, circulating agendas, and writing minutes. In
between meetings, the Secretary is the main point of contact for other
organisations and the MS Society in general, and this involves letters and
emails to these external bodies. The Secretary plays a crucial role in keeping
contact with members of the Branch, and the Committee, and works very
closely with the Chair. Working experience of word processing and emailing is
essential. The job is very rewarding, in all sorts of ways, except financial!
Branch Telephone Co-ordinator:
T
he Branch Support Team looks after all enquiries from people affected by
MS – e.g. information on Branch activities, requests for help and support,
suggestions for help from other organisations, and general non-professional
advice. The Telephone Co-ordinator is responsible for answering the Branch
help-line, dealing as far as possible with requests and passing on specific
enquiries to other members of the Team. We get 10 - 12 calls a week.
It is useful if the Telephone Co-ordinator can
answer immediately, but there is voicemail
for people to leave messages, which can be
accessed later. The job might be especially
attractive to someone who can be around
most of the time, but a mobile is used, for
flexibility. A very rewarding job for someone who is knowledgeable about MS
and the Branch, or is willing to learn, and who is good at keeping records and
passing on information. Again, a volunteer post.
13
RESEARCH NEWS
Researchers identify 48 new genes linked to MS
R
esults of a new study into finding the genes that may increase a
person’s likelihood of developing MS have been published today 30
September in the journal Nature Genetics.
This is the largest study of its kind to be carried out for MS and involved
gathering data from over 38,000 people, including 14,498 people with MS. In
total, 48 new genes that show links to MS were identified. By combining this
with the results of a similar study from 2011, there are now over 100 genes
known to be associated with MS.
Links to the immune system
Interestingly, most of the genes identified in the study have a role in the
immune system. The researchers also found that some of the genes identified
are linked to other autoimmune conditions, such as Crohn’s disease and
inflammatory bowel disease.
The MS Society co-funded the study, which was conducted by the International
MS Genetics Consortium (IMSGC), an international collaboration between
scientists from across the world. In the UK, the study was led by researchers at
the University of Cambridge.
Dr Susan Kohlhaas, Head of Biomedical Research at the MS Society, said:
“We need to discover as much as we can about the factors that may increase
a person’s risk of developing MS if we’re to find new ways of treating or even,
one day, preventing the condition. Genes are one of the key risk factors, so
we’re delighted to have co-funded this work, which has identified several new
avenues for MS research to follow.”
DONATIONS AND SUPPORT
O
T
nce again, Mrs. Kumari Lal of Great Barr has sent in the proceeds from
the MS collection box in the family shop — a magnificent £355! The
Branch is extremely grateful for this continuing support.
he collection held at Tescos Spring Hill raised 239.40. Thanks to those who
gave up their time to help: Chris Kyne, Laurel McLeod, Graham Bagnall,
Wendy Hall, Dan Hall, Patti Parkes, Sandy Lamb, and Stephen Leake. Special
thanks to Stephen, who contributed £50 himself as well as collecting from other
people!
W
e are pleased also to acknowledge
14 the kind donation of £100 from
Richard and Seana Davies.
BRANCH COMMITTEE
Laurel Mcleod
Zoe Berry
Andy Jarrett
Baldish Kaur
Philip King
Chris Kyne
Sandra Lamb
Sara Leung
Verity Milligan
Ivon Mouanda
Cleo Reid
Jane Smith
Janet Watts
David Whitfield
Chair
Member
Regional fundraiser
Fundraiser
Newsletter editor and membership secretary
Transport manager
Member
Publicity officer
Website editor
Assistant treasurer
North Birmingham group organiser
Lead development support officer
Treasurer
Support lead
Since the last BruMS, Anji Page has stood down as
vice chair, and Zoe Berry continues to sit on the
committee although she has had to relinquish her role
of secretary. Our heartfelt thanks go to them both for
their hard work and support. To Zoe a special thanks
for involving herself so fully and efficiently in all
aspects of the work of the branch and keeping us on
our toes! We are now looking for a new secretary see our appeal on p 13.
The next issue of BruMS will be out around midDecember
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