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The Birmingham Multiple Sclerosis Society Newsletter
Registered Charity numbers 1139257, SC041990
Issue 38 Winter 2013-14
HOW TO CONTACT US:
by phone 0121 2465876
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
S
eason’s greetings! You will hopefully receive this latest edition before
Christmas, though at the moment it is touch and go with the editor having
been beset by illness, crashing telephone, computer problems, and all the general
rush to get things done in time. Probably something like what many of you have
been experiencing yourselves. At least it has been mild so far.
The Christmas lunch was the most successful one for a number of years, and a
report is on p 2. Stephen Leake kindly provided one raffle prize of two tickets to
the panto at the Hippodrome, and the Plough and Harrow gave two prizes of a tea
for two and a meal for 2 at their restaurant. The raffle raised the great sum of
£170 for branch funds.
We take a break from our usual content for a few pages in this issue to give you
two interesting and very encouraging and positive accounts provided by two
young volunteers who have both been supporting the branch recently.
The provision of care is an increasingly problematic topic, and we include details
of two forms of provision which you may like to get further details of. These
accounts are on pages 8 and 9.
Our next edition should be out in March. Until then, keep warm!
All views expressed are the authors’ & not necessarily those of the MS Society.
N
early 50 members and friends of the branch came to the Plough
and Harrow to enjoy the branch’s annual Christmas lunch,
which this time also celebrated the 60th
anniversary of the MS society. A
number of guests consisting of people
who have helped the branch in various
ways also responded to our invitation.
They included Sarah and Eileen, who
run our Exercise and Tai Chi classes,
Dawn Brookfield who has raised funds
for us, Fraser Tennant, who has provided informative articles on the
ever-changing state welfare provision for BruMS, and staff at
Tuckeyprint, who are our friendly and always willing printers.
The proceedings were enlivened throughout by the charming voice of
Yolanda Penn, our invited singer. They
were brought to an end with something of
a bang by Cole Ward! We were also very
grateful to be presented with £2000, the
result of a collection by "Medics
Operating for Others" Christmas party at
Birmingham University. The picture
(right) shows Sam, Sarah and Anjali.
Confirming the total with David Whitfield.
One slight blot on the proceedings was that most
people had left by the time our 60th anniversary
cake was produced. For those who missed it, here is
a picture. The rumour that committee members
polished it all off is untrue! It went to a residential
home the next day where it was much appreciated by those living there.
Our warmest thanks to Sandy for organising the occasion!
2
BRANCH ACTIVITIES—COME ALONG AND GIVE THEM A TRY!
Art and craft classes. Fortnightly Mondays 11 am - 1 pm. £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 January 18th,
February 15th, March 15th, April 19th,
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.
3
‘My Rollercoaster Year’
Sophie Minor: Young Person’s Co-Ordinator
About a year ago, whilst studying at the University of
Southampton in my final year, I found I was finding it difficult
to walk to and from my final exams and struggling to see the
words on the exam papers. No doctor seemed to be able to
diagnose my problems, until the day before a fifth doctors
appointment, where my whole face had drooped, leaving me
unable to smile, wink or close my eyes to sleep. That day I was
rushed to A&E and after four days in hospital with a steroid drip
I had the diagnosis of Multiple Sclerosis, which turned out to be
an aggressive form. The diagnosis seemed to explain so much,
including the years of balance problems and consequential falls.
After being called ‘clumsy’ and ‘accident-prone’ for most of my life it was good to
finally understand why! I was 21 at the time and knew then, I might need to adapt
some aspects of my future.
I found myself taking on new challenges
At first, I found this very difficult as I had never heard of Multiple Sclerosis
and was too scared to do any research. I didn't know what to expect. Although I was
upset and confused, I found myself taking on challenges that I might not have
encountered before my diagnosis. I travelled to Sri Lanka to teach English to teachers
and found myself also teaching Conversational English to over 70 Sri Lankan Army
Officers. I have also recently completed the Birmingham Half Marathon, which is
something I never thought I'd ever be capable of. I also found that the diagnosis of MS
seemed to make sense for me. Experiences like this led me to accept my diagnosis as I
felt I did things I never thought I would or could do. Now I understand the condition
more and have my smile back!
When I was diagnosed with Multiple Sclerosis, I found it difficult to explain to
friends what I was going through or how I felt, as I didn’t know myself. I also felt quite
alone. Although my family, friends and health professionals were all there, I felt quite
alone and that I had to come to terms with the diagnosis myself first. I am now, after a,
roller coaster year, proud of the diagnosis given to me and I now volunteer for the MS
Society as a young person’s co-ordinator of both the Birmingham and Dudley
Branches.
As the young person's co-ordinator, I am planning to hold an event for young
people with MS and also those newly diagnosed. This will be a fun, informative event,
which will hopefully make the new diagnosis easier to deal with, and provide a place
where people can get to know each other and have the chance to talk about issues they
might not have otherwise had the chance to.
4
A place where people can get to know each other’
MS is an unpredictable condition and what's around the corner is not
known but everyone I have met with the condition so far has taken this in their
stride and I just hope I follow this myself and help others to. I look forward to
the challenges in my new role as Young Person's Co-Coordinator of both the
Birmingham and Dudley Branch
If you are interested to find out more please get in touch:
Email: [email protected]
Or follow us on Twitter: @Birm_DudMSYouth
Smiles from Sophie and other participants in the Birmingham half-Marathon
(the BUPA great Birmingham run) who ran to raise money for the MS society
on 20th October. The next one will be run on 19th October 2014
5
Volunteering with the MS society:
F
rom June to July of this year, I had
the honour of volunteering in a
thoroughly enriching experience for the
Multiple Sclerosis (MS) Society in
Birmingham. My first port of call in this
volunteering cruise was situated at the
Birmingham City Council building
courtesy of the bubbly and vivacious
Zoe, who invited me to partake in the
Zoe!
volunteering marketplace event, for
which I am exceedingly grateful. Suited and booted with the MS attire, an
orange MS bib and two swanky badges, we set about trying to garner
donations, new society members and volunteers in what proved to be a
tremendous and insightful few hours of work.
Chris’s MS (bat)
mobile!
Not long after this very enjoyable
episode I next docked my vessel, i.e.
my bike, at the MS society transport
vehicle to act as an escort to half a
dozen adults affected by MS. This
involved transporting them to the
MS vehicle and then securing them
safely into the vehicle, before
heading off to a specially equipped
MS gymnasium.
Before this however I had the privilege of meeting of Chris. A
septuagenarian that defied his age with boundless energy and charm as
he leaped, vaulted and cart wheeled (slight exaggeration) hither and
thither. We got on like a house on fire. An
‘Six pack’ Pete
absolute joy of a man who talked to me
about Wordsworth, Wilde, Wodehouse,
Thomas Gray, Byron, Shelley and other
poetry, for which he produced his own
work. He called it “poizin”, a former illicit
whisky drink, and when applied to his
poetry he said, “in small doses”, like the
whisky drink, “it won’t cause any brain
damage!”
6
On our journey we first picked up the warm-hearted Pete, later known as
six pack Pete in reference to his six pack of beer in the fridge and not his
abdominal muscles.
Gabby and Judy! Next up was the hilarious Judy; a lover
of cigarette breaks at the gym, Madge;
had so many great family anecdotes
and recollections of TV shows gone by,
Zoe; who never stopped smiling and
finally Gabby; a lover of the gym
where we had some great chats. For
the next hour or so we went round the
gym helping each other to enjoy a
great time together in another
wonderful experience with a fantastic group of people.
I would recommend volunteering with the MS society to anyone in a
heartbeat and I am only
disappointed that I couldn’t spend
more time with these great people.
The MS society can provide superb
emotional support, the right care
and benefits guidance to
healthcare professionals, carers
and families affected by MS, for
which 100,000 people in the UK
are affected by.
7
Birmingham City Council
Transforming lives through telecare
B
irmingham City Council is transforming the lives of thousands of
local people through an innovative technology-enabled service
called telecare. The Birmingham Telecare Service uses a wide range of
technologies that help people with health and social care needs to live
safe, independent lives at home. Birmingham’s telecare also includes a
round-the-clock response service that means people can get help
whenever it is needed. Introduced in 2011, working in partnership with
Tunstall Healthcare, the Council’s service essentially maximises
people’s independence while minimising risks such as floods, fires and
intruders.
Birmingham City Council understands that every individual has different
needs, so its telecare services are always personalised for the user.
Telecare packages may include sensors placed unobtrusively in the
home, a heat, gas, flood or fall detector, or a personal alarm worn as a
pendant, wristband or watch.
The Birmingham Telecare Service is not only a source of confidence
and reassurance for those using it, but it also gives families and carers
freedom and peace of mind and can help everyone to live better lives.
Want to know more about how telecare can help you?
Call 0844 415 9393 or visit www.birminghamtelecareservice.co.uk
8
9
MEDICAL RECORDS:
(We have received the following information from another MS Branch,
concerning changes to personal and confidential medical records. We
pass it on to members, but anyone should seek further advice from their
GP practice, or from the website www.hscic.gov.uk, if they wish to take
action.)
GP practices nationwide will soon be required to supply patients'
personal and confidential medical Information, on a regular and
continuous basis, to the Health and Social Care Information Centre
(HSCIC). This information will be extracted from the practice in a form that
will include your NHS number, date of birth, postcode and gender.
Under the Health and Social Care Act 2012, GP practices have no
choice but to allow the HSCIC to extract this information. The
programme, called care.data, is administered by the HSCIC using
software and services provided by a private sector company (ATOS).
The data will be stored on HSCIC national servers and not on GP
systems. The HSCIC will administer the data, and states it intends to use
it “for planning health services and for research”. This is known as
“secondary uses” of your medical records.
Once the data has been extracted, the GP practice is no longer the
data controller for that information, and cannot control or protect in any
way how that information is used, shared or who has access to it. The
HSCIC will be the data controller for your uploaded information and will
have total control over it.
Although GP practices cannot object to this information leaving the
practice, individual patients and their families can instruct their practice to
prohibit the transfer of their data, i.e. you have the right to opt-out.
Opting-out will have no effect on the medical care that you receive
either from your GP surgery or from anywhere else within the NHS or
private sector. Nor will it affect your GP surgery and the way it provides
services.
If you do nothing, i.e. you do not opt out, then your medical
information will be extracted and uploaded to the HSCIC.
You will still need to opt out to prevent care.data uploads even if you
have already opted out of the NHS Database (The Summary Care
Record). The NHS Database opt out will not prevent care.data
uploads.
There is a lot of information available about care.data, which you
may chose to refer to before you decide on whether you wish to opt out or
not.
How do I opt out ? Fill in the opt-out form at your doctor’s practice
and return to the reception (or hand it to the doctor or nurse that you are
consulting with).
10
“MS-SMART” - A NEW MS DRUGS TRIAL
The MS Society is supporting a new drugs trial to be carried out under the management
of the University of Edinburgh. Volunteers are currently being sought for the trial. Three
drugs are to be involved, any or all of which could change lives by slowing or stopping
progressive MS in its tracks.
The drugs:
Riluzole, the only UK licensed treatment for motor neurone disease, has been tested in a
small trial for people with progressive MS which showed that it had slowed down the
rate of brain shrinkage.
Ibudilast is a treatment for asthma, and has shown encouraging anti=progressive results in
brain scans in people with MS
Amiloride has been used for years to treat high blood pressure. It has shown signs of
reducing brain shrinkage in a small trial of people with progressive MS
The timescale:
The timescale for the trial is recruitment phase (starting soon) , to last one year. The
drugs trial will then last two years. Then the analysis of the results will be done by
scientists at University College London, after which findings will be presented in 2017.
Who can join the trial?
The main eligibility criteria are:

Age 25-65.

Not on DMT (disease modifying treatment).

Still able to walk between at least 20 metres (even with the support of 2 crutches) or
up to 500 metres without help.
If you or someone you know would like to take part, please go to
www.mssociety.org.uk/ms-smart for fuller details.
Wishing you all a merry Christmas and
a happy new year!
11
INVITATION TO PILATES SESSIONS
P
ilates is an exercise system that focuses on stretching and strengthening
the whole body to improve balance, muscle-strength, flexibility and
posture. It was created by German-born Joseph Pilates in the early 1900s and
incorporates elements of yoga, martial arts and Western forms of exercise.
(definition from Wikipedia).
We have received an invitation for a free pilot trial of the Pilates system, for
people affected by MS. This will take place early in 2014, probably at a
central Birmingham venue.
This should add to our already successful exercise and T'ai Chi classes. If you
are interested to take part, please let us know what days and times would suit
you, and your level of mobility. If central Birmingham is difficult for you, it is
possible that another location could be arranged.
If you are interested, please send the above information, and your name and
contact details, to:
phone - 0121-246-5876
text - 07746-130-806
email - [email protected]
Chair
Zoe Berry
Andy Jarrett
Doreen Katusiime
Baldish Kaur
Philip King
Chris Kyne
Sandra Lamb
Sara Leung
Verity Milligan
Sophie Minor
Ivon Mouanda
Cleo Reid
Jane Smith
Janet Watts
David Whitfield
Member
Regional fundraiser
Health and Safety Officer
Fundraiser
Newsletter editor and membership secretary
Transport manager
Member
Publicity officer
Website editor
Lead Young People Coordinator
Assistant treasurer
North Birmingham group organiser
Lead development support officer
Treasurer
Support lead
Yushi Zhang
Fundraiser
12
BRANCH COMMITTEE
Laurel Mcleod