Back-up COPY Feb 02 MS Gloucester Newsletter Feb

St Oswald’s
Steve relieves young
Olivia of her pocket
Store Collection
18th December
Mark Panting &
Steve Pearce
Janette Stevens
& Dave Edwards
This newsletter is published by the Gloucester & Forest of Dean Branch of the MS Society. All the views
expressed in this publication are individual and are not necessarily the view or policy of the charity and its
Multiple Sclerosis Society - Registered charity nos. 1139257 / SC041990
In this issue:
Editorial page 2
Meet Your Committee - Member Profile page 3
Recent events pages 4-5
Forthcoming events page 6
Fundraising and Funds Raised page 8
Area Fundraising Events page 8
Sue’s Bits & Pieces page 9
The MS Tissue Bank pages 10-11
Contact your local branch: e-mail:
07934 919620 (as this is a mobile we will call back)
web site: coming soon!
MS Helpline: [freephone] 0808 800 8000 Mon-Fri 9:00am - 9:00pm
Gloucestershire MS Therapy Centre: 01452 419246
Well, what can I say? I am overwhelmed by all the nice messages I have received about the
last Newsletter and hope I can live up to your expectations in the future. Thank you all very
much. Apologies to those whose names may have been mis-spelled in the last edition: I was
given an uncorrected list!
Having rather fallen in at the deep end last time, with my knowledge of MS amounting to
something that could easily be written on the back of a postage stamp (several times!) I am
learning fast and have started to notice those places which are accessible and those which are
not. I spotted this “disability access” doorway into a Local Pharmacy in a Northumberland
seaside village over the Christmas holiday period. To be fair, they have done their best with
what is in all probability a listed building, but the narrowness of the door rather defeats the
object! Not being in possession of a ruler, the not-all-that-wide chap in the photo is intended as
an indication of the width of said doorway which was certainly no more than 2 feet across. I
wonder how many unwary holiday-making wheelchair users get stuck half in, half out, during the
course of a summer season?
I hope you all enjoy this issue of your Newsletter and find something in it to inform and entertain
you. Remember it is YOUR Newsletter so please submit articles, snippets of news, humour,
information, or stories of what you have been up to (keep it clean!) or where you have been. Ed.
Send to or to 6 Sudbrook Way, Gloucester GL4 4QW
Join the Committee and become involved in the running of your Branch!
We need a volunteer to take on the role of Branch Secretary
Please contact Malcolm Wilson (Chairman) on 01452 424262 or by e-mail
Member Profile – Deputy Chairman - GRAHAM SPEARMAN
Graham lives in Lydney in the Forest of Dean. In his own words:
“My wife (Liz) suffers from MS and she was diagnosed about 14 years ago. She thinks that she
had her first attack back in the early 80s, when she worked in London for Nat West. We have
been married for over 34 years, and one of our claims to fame is that we got married at the
same venue as David Bowie. She took early retirement from her job with C&G on ill health
grounds. That’s enough about her. [Cheeky beggar! Ed.]
I took early retirement myself in 2011 from Gloucestershire County Council, so that I have more
time to support Liz. For the last 37+ years I have been involved in Youth Work. When I left the
County Council I was the Area Manager for the Council’s Youth Support Service. Before coming
to Gloucestershire I managed Youth Centres in Goffs Oak, Hertfordshire, New Ash Green and
Margate in Kent.
I undertook my Youth Work Training at Bulmershe College of Higher Education, Reading
between 1976 and 1978. I have also worked for a bank, been the warden of a hostel for
homeless young people, young people’s advice worker and a Fire Fighter with the London Fire
I still work regularly with young people, as a volunteer at Bream Devils Youth Group, which is a
youth group for young people with special needs. I continue to go camping with the scout group
I was a leader with back in the early ‘70s. I am the treasurer of a local charity, which supports
local youth groups, providing them with training, access to activities and information and advice.
I also deliver circus skills workshops and mobile team challenge sessions for local youth
groups. So if you want to learn to juggle or spin a plate let me know!
Apart from the voluntary work with young people, I like walking and play golf very badly.”
Ooh, hidden talents there Graham! We could go for a double act – you juggling and plate
spinning and me dropping things and plate smashing! [Ed.]
First one done – who’s up next? ☺
The Christmas Lunch held at the High Orchard, Gloucester on 16th December was well
attended and looking at the photographs that have emerged, a good time was had by all.
Contributed by Jenny Lowery, photos by Malcolm Wilson.
We have had three [3?? Now that's just greedy! Ed.] very enjoyable Christmas meals leading up to
the Christmas holiday.
First one was at the Avenue Hotel in Gloucester.
Second one was at the Orepool in the Forest of Dean.
Third one was at the High Orchard in Gloucester. This was a new venue for a Christmas meal
and feedback was positive. Thank you to all who attended.
------------------------------------------------The Forest Quiz Meeting held on 8th January was only attended by 11 members with several
others sending apologies due to prior commitments or illness, but that didn't prevent it from
being an enjoyable evening - in spite of one of the absentees-through-illness being the
Instead, Graham Spearman came up with the idea that we all contribute two questions each
(amazing how 10 minds all went blank at the same time!) which would be asked in turn, with
everyone else writing down their answers. It was surprising and interesting to discover what
people found to ask with no prior notice or preparation and questions ranged from the
somewhat obscure "what was stuck on to the hulls or warships in Nelson's day?"* to who had
won the 2014 Formula 1 Grand Prix or who had been victorious on TV's recent "Strictly" dance
contest. Top scores were tied at 14 and after two tie-break questions a draw was declared with
one of the winners being Kevin Beddis. [The other one modestly wishes to remain anonymous! Ed.]
Steve Pearce was runner up.
*Copper - as in "copper-bottomed."
------------------------------------------------Steve Pearce spoke live on air to Chris Baxter of BBC Radio Gloucestershire on Thursday 15th
January to promote the Meeting in Gloucester on 17th.
The Meeting was well attended on a bright but cold Saturday afternoon and was opened by the
Chairman who asked the 30+ attendees to think about when and where they would like future
meetings to be held.
Andy Jarrett who lives in Gloucester, making this his local Branch, spoke about Area and
National fundraising events, with interest from some Members being shown in the Severn
Bridge Walk on Sunday 26th April. (More details later in this Newsletter)
The Branch Social Officer, Jenny Lowery, talked about the boat trip along the Gloucester and
Sharpness Canal which she is hoping to book for Wednesday 3rd June with the Willow Trust, a
charity which runs two specially adapted boats for disabled people. There is space on board for
a maximum of 30 guests, including carers, and of these about 12 can be wheelchair places. If
you are, or think you might be, interested in joining this cruise along the beautiful and tranquil
canal, please let Jenny know as soon as possible, especially if you will require a wheelchair
space, as she needs to be able to give the Trust some idea of numbers when the booking is
made. The trip will depart from the Trust's base at Saul Junction at 11:00am at the latest,
returning around 3:00pm. It may be possible to arrange limited transport to and from Saul.
Contact Jenny on 01452 532303 or by e-mail at regogden@tiscali for further information
and to book your place.
The Willow Trust has a website here:
Tea, coffee and biscuits were enjoyed in the break; jars of home-made marmalade changed
hands for a very reasonable price and tickets were purchased for the Raffle, which was drawn
when the formal part of the Meeting recommenced.
It was agreed that the next Meeting in Gloucester on Saturday 28th February will again be held
at The Gloucester Deaf Community Centre, commencing at 2:00pm and that a Speaker will be
booked for the afternoon.
Stop Press! Jackie Harris has now been booked to give a talk about the National Waterways
A suggestion was made that it would be good if some future Meetings could be shared jointly
with the Gloucester City-dwelling Members and those from the Forest at a location mid-way
between both places, and that Minsterworth Village Hall would fit the bill nicely. This is where
the Committee meets and the availability of the Hall on various dates will be looked into.
The Treasurer announced that the Raffle had raised the sum of £41 for Branch funds.
Thursday 12th February
Forest Meeting - Coffee & Cake - at the Great Oaks
Dean Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Tuesday 24th February
Lunch at The Haywain, Quedgeley GL2 4PE at 12:00 noon
Saturday 28th February
Meeting at The Gloucester Deaf Community Centre, Colin
Road, Barnwood, Gloucester GL4 3JL at 2:00-4:00pm
Talk about the National Waterways Museum by Jackie Harris
Thursday 12th March
Forest Meeting - Gadget Night - at the Great Oaks
Dean Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Saturday 21st March
Meeting at The Gloucester Deaf Community Centre, Colin
Road, Barnwood, Gloucester GL4 3JL at 2:00-4:00pm
Talk to be arranged
Tuesday 24th March
Lunch at The Wagon & Horses, Hucclecote GL3 3TP at 12:00
Thursday 09th April
Forest Meeting - Coffee & Cake - at the Great Oaks
Dean Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Tuesday 28th April
Lunch at The Belfry, Littledean GL14 3JS at 12:00 noon
Thursday 14th May
Forest Meeting - MS talk (provisional) - at the Great Oaks
Dean Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Tuesday 26th May
Lunch at Wheatstone Inn, Barnwood GL4 3HR at 12:00 noon
Wednesday 3rd June
Boat trip (provisional) with the Willow Trust on the Gloucester &
Sharpness Canal 11:00am-3:00pm
Thursday 11th June
Forest Meeting - Bring & Share Barbeque - at the Great Oaks
Dean Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Tuesday 30th June
Lunch at Fagins, Brookthorpe GL4 0US at 12:00 noon
(formerly Four Mile House)
Thursday 09th July
Forest Meeting - MS Nurse Sue Johnson (provisional) - at the
Great Oaks Dean Forest Hospice, Coleford GL16 8QE at
Tuesday 28th July
Lunch at Priory Harvester, Gloucester GL1 2SR at 12:00 noon
In addition there are exercise classes every Friday at 10:45am together with the
British Heart Foundation at Elmscroft Community Centre, Brockworth. Gloucester GL2 0RS.
There is a charge of £2.50 for this event.
There are some exciting behind-the-scenes discussions taking place about introducing further
events to our Branch Calendar, so….
Coffee Mornings in the Forest?
Under consideration is the possibility of holding coffee mornings in and around the Forest area
and towards Gloucester, on the 4th Thursday of every month, visiting different cafés in various
locations. If you would be interested in doing this, and/or if you are able to suggest possible
venues, then please contact Graham Spearman by e-mail at or by
phoning him on 01594 528196
Exercise Classes in the Forest?
Another possibility currently being explored is that of holding MS Group exercise classes at
Viney Hall Physiotherapy, Lydney, on Tuesday afternoons.
It is envisaged that the exercises will be tailored to the individual and that this will require an
initial 60-minute assessment. The Branch has agreed to meet 50% of the charges for the
assessment and the course fees: costs for the latter will depend on the numbers who commit to
attending. The classes will be led by Katy Roberts who is a Chartered Physiotherapist and
Pilates Instructor with a specialism in neurology.
There is a website which may be of interest:
We must have a MINIMUM of 6 people to enable this course to run but higher numbers will
mean there will be less to pay for the weekly fee! As above, if you would be interested in joining
this class, and for further details, contact Graham Spearman, e-mail or
call 01594 528196
Saturday 14th February - St Valentine's Day [Flowers and choccies for the person of your dreams!]
Tuesday 17th February - Shrove Tuesday
Sunday 1st March - St David's Day
Dydd Hapus Gŵyl Dewi! [Wear a daffodil or a leek!]
Tuesday 17th March - St Patrick's Day
Lá Shona Fhéile Pádraig! [Wear some shamrock!]
Sunday 29th March - Palm Sunday, but more importantly, the day to put your clocks forward
by 1 hour as British Summer Time begins. ☺ [Spring forward!]
From Steve Pearce, Branch Fundraising Officer (Gloucester) and Margaret & Michael Rose,
Branch Fundraising Officers (Forest of Dean)
Please note that Store Collections are generally taken between 10:00am and 4:00pm.
There will be a collection on Saturday 7th February at MORRISONS, Glevum Way Shopping
Centre, Heron Way, Abbeydale, Gloucester, GL4 4FF
In the Forest there will be a collection at the CO-OP, Lydney, GL15 5RB on Saturday 14th
February - that's St Valentine's Day for the romantics amongst you.
Street Collections will be held in COLEFORD on Saturday 14th March and in CINDERFORD
on Saturday 16th May
Sadly the Collection planned for 6th December 2014 at the TESCO store in Quedgeley,
Gloucester did not take place as, when the Collection Team arrived in the morning they found
that someone (without the proper authority to do so) had double-booked with another Charity.
As there were more of them (and they were all bigger than us!) the MS Branch, at considerable
inconvenience to the Team, some having travelled from the Forest, and all having given up their
Saturday especially to do their bit, conceded defeat…
The collection made at the TESCO store in St. Oswald’s Road, Gloucester on Thursday 18th
December fared much better, in 6 hours raising for the Branch a total of £345.32 [See
photographs on page 1]
To make up in part for the er… misunderstanding on 6th December, a 'replacement' Store
Collection was arranged for Saturday 27th December 2014 at TESCO, Quedgeley, which
raised £197.09
Collecting Boxes opened in December yielded the following:
From Pat Metcalfe - £59.84
From Interior Designs, Eastern Avenue, Gloucester - £83.77
From Andy Jarrett Area Fundraiser
Severn Bridge Walk
What better way to start MS Week than by taking part in the inaugural Severn Bridge Walk on
Sunday 26th April?
The accessible 6 mile route will start and finish at Brightside Park near the Severn View
Services off the M48/A403 at Aust, giving some spectacular views.
Face painting, games for children and refreshments will all be available to make it a fun family
friendly event.
Registration fee just £10. Children free.
Why not register today to show your commitment to beating MS and raising funds for the
branch? or contact Andy Jarrett on 0208 438
0943 or by e-mail at
Other Fundraising and Challenges will be:
Tuesday 12th May - Cake Break Day
Sunday 17th May - Tewkesbury Half Marathon
Sunday 21st June - Cheltenham Circular Challenge
Saturday 18th July - Zip Slide in Snowdonia (fastest in the world at up to 100mph!)
For more information about any of the above get in touch with Andy who will be delighted to
supply further details.
Sue Bennison has had MS since 1986 and contributes regularly to local Groups &Newsletters.
How to obtain road-tax-exemption
'Disabled Motoring' has summarised the rules on how to tax your vehicle in the free disabled
• The vehicle must be used only for your needs - the person with the illness or disability.
• The vehicle must be used only for your direct benefit.
• The exemption is only for people on Higher Rate DLA Mobility Component, War
Pensioners Mobility Supplement, Enhanced Mobility PIP (100% exemption) or Standard
Mobility PIP (50%) exemption.
• The vehicle doesn't have to belong to the person.
• The vehicle's registered keeper should claim the exemption.
The registered keeper could be: You - the person with the illness or disability
or: Someone else who uses their vehicle only for your needs.
For full details go to:
Rica (Research Institute for Consumer Affairs)
The latest newsletter on 'Consumer research for older and disabled people' has information on
mobility scooters, younger disabled drivers, parking issues and for people living with a long term
Rica is always a useful source of info on consumer products.
Committee Capers
(As there is another small space to fill here!)
Congratulations to Steve Pearce who won himself a bundle of assorted music CDs, including
one specially signed by singer Ferdinand Rennie, for submitting the best (as judged on the
studio 'Groan-o-meter') Christmas Cracker style one-liner to the “Big Boots & Celtic Roots” live
Christmas Show on Lionheart Radio. The star guests in the studio on the night, musical theatre
vocalist Ferdinand, and Brian Rennie who is a top couture designer (‘Google’ them if you are
able!) made the final choice.
“What is white all over, orange at one end and goes round an ashtray at 100mph?”
“An E-type fag.”
All together now: GROOOAAN!
(Runner up was not much better: “What does Santa suffer when he’s stuck down a chimney?”
“Claus –trophobia!”)
Submitted by Christina Haynes, who is a Helpline Volunteer for the MS Society. She has MS,
is an ex Neurology nurse and recently attended the annual Helpline Conference where she
heard a talk about the Tissue Bank given by Dr George Gveric. Christina says:
"I thought it might be helpful to share with Branch members some information about the MS
Tissue Bank."
Why is tissue needed for research on multiple sclerosis?
The symptoms experienced by people living with multiple sclerosis are a result of damage
taking place within their brain and spinal cord. Although there are a number of different ways to
conduct research on MS, being able to study the very tissue that is damaged in this disease is
vital to our developing better treatments. The MS Society Tissue Bank retrieves and stores
tissue bequeathed by registered donors and makes samples of the material available to
scientists carrying out research on MS. The donation of tissue is therefore a precious gift that
will further understanding of MS and make an essential contribution to finding a treatment for
the disease.
Who can register as a donor?
People living with MS, those with conditions other than MS and those who are healthy can all
register on the donor scheme and bequeath tissue for research on MS. Samples of tissue from
people that did not have MS are of crucial importance since they allow scientists to compare
tissue damaged by MS with the normal situation. Please contact us if you have any specific
What tissues are needed?
Since MS is a disease that is specific to the brain and spinal cord, these tissues are of most use
to research. The cerebrospinal fluid (CSF) bathes the brain and spinal cord; so, the study of
CSF may also provide useful information. In order to explain why the damage in MS is restricted
to the brain and spinal cord, scientists may wish to compare this organ with other tissues, for
example, muscle. Therefore, routinely these are the tissues that are removed from donors
• the entire brain
• the entire spinal cord
• a sample of CSF
• a small sample of muscle from the back
Donation of Tissue to the MS Society Tissue Bank
When and how will the tissues be retrieved?
The tissues listed above are removed after the registered donor has died. Tissues of the brain
and spinal cord change very quickly after death and so material that has been removed from the
body within 24 hours of death is of greatest value to research. Since it is vital that the Tissue
Bank is contacted as soon as possible after death, preferably within a couple of hours, they will
ask to ensure that next-of-kin or legal representative, and health care professionals are aware
of the bequest. Everyone concerned should know that in the event of death someone needs to
immediately telephone the Tissue Bank. They are on standby 24 hours a day, every day of the
When and why it is sometimes NOT possible to go ahead with the tissue retrieval?
On rare occasions when they are not able to retrieve and preserve tissues within 48 hours due
to unforeseen circumstances they will not go ahead with tissue retrieval.
This is because irreversible damage is induced in tissue samples after 48 hours and as such
that tissue will not be useful for research. The Human Tissue Act introduced in 2006 clearly
states that human tissue samples must not be taken if they are not to be used for the purpose
specified in a given consent, i.e. medical research.
Major exclusion criteria for tissue retrieval:
• Presence of systemic infectious disease such as MRSA or septicaemia
• Unable to arrange retrieval within a specified time:
• Death has to be certified by a coroner
• Too long a delay in being informed of death
•The Tissue Bank’s ability to rapidly retrieve tissue from donors is very much reliant on the good
will of GPs and NHS post mortem technicians. Their availability to assist is therefore not
If you would like to go ahead and register for tissue donation, you will need to ask for an
application pack from the Tissue Bank. The contact details are:
Phone: 020 7594 9734 Fax: 020 7594 9735
While it has always been the case that Badges need to be renewed in good time BEFORE the
expiry date, it seems that some local authorities have allowed a period of 28 days' 'grace' before
issuing penalties. The following has been passed on to us by Rachel at the Gloucestershire MS
Information and Therapy Centre.
Traffic Wardens have been advised that there is now NO LONGER a 28 days' grace on
renewal of blue badges. If a blue badge is not displayed or is out of date by even ONE
day they will be issuing a ticket.
The Power of Words
Have you found that if you say "I can't" as in I can't reach that or I can't walk that far etc; some
people will hear you being pathetic or worse, hear the words as "I won't"?
They tend to respond with "you can if you try harder", which doesn't help.
So I've changed the words to "I am unable to", I find that this has a much better reception &
usually results in ungrudging help.
Funny thing, words.
Contact Kevin of Associated Taxis
07773 382442
Coming soon:
More Committee member profiles.
Understanding MS - "To whom it may concern" open letter
Sue and Toby - a driving force at Sandringham last summer
All submissions for the April-May Newsletter by 16th March 2015 please!
And Finally….
If you have a computer and internet access then please, please, PLEASE sign up to
receive your Newsletters by e-mail as this will enable us to keep producing these bigger
illustrated editions which cost the branch a small fortune to send out by post.
Pass your e-mail address to your Chairman or any Committee member now!
Thank you.
Saves trees, too!