Thursday, 31 March 2011

Are you interested in a Christian Support group at BMSTC?

One of our members, Sharon Munday, wonders if anyone who comes to the Centre would be interested in joining a Christian Support Group? If you are interested please email pippa@bmstc.org who will then put you in touch with Sharon :0)

The Facebook treatment for MS

Source The Sydney Morning Herald:
A patient-led movement, fought via social media, has fuelled the widespread use of a controversial treatment for MS before research has proven it effective, writes Michael Slezak.   Read more here.

Multiple sclerosis treatment ignites hope, skepticism

Source Detroit News:
Detroit — Soon after Robert Tyranski was diagnosed with multiple sclerosis, he volunteered to let a local researcher take thousands of images of his brain and neck.

The images will be used to examine a new phenomenon that has generated enormous debate in the MS community, especially in Detroit, where two high-profile Wayne State University researchers represent both sides.   Read more here.

NHS needs to face its responsibilities regarding Sativex

Source The MS Trust:
Despite approval as a treatment for spasticity, people with MS continue to have difficulty accessing Sativex.


In June 2010 the Medicines and Healthcare products Regulatory Agency (MHRA) licensed Sativex, a cannabis based oral spray, for use as an add-on treatment for MS-related spasticity when people have shown inadequate response to other symptomatic treatments or found their side effects intolerable.   Read more here.

Multiple Sclerosis sufferers in Bristol 'hopeful' as drug trial launched

Source This is Bristol:

A TREATMENT to halt the progress of multiple sclerosis could become a reality for sufferers after the launch of a major trial in Bristol.  Read more here!

CTV Edmonton - "We are sorry" - CTV News

Source CTV.ca:
A member of the Alberta chapter of the MS Society of Canada is apologizing, saying the society should have been more supportive of the controversial CCSVI treatment.  For more click here.

Survey of MS services across England and Wales

Source MS Trust:

■Do you have MS?

■Have you had contact with the NHS about your MS in 2010?
■Would you like to help us to improve MS services?  More here!

'Powerful evidence' of growing role of specialist nurses revealed

Source Nursing Times:
“Powerful evidence” of the growing role of specialist nurses in the NHS has been demonstrated by figures showing the number of outpatients they treat is rising by more than 100,000 a year.


By the end of next month there will have been a 465% increase in outpatient attendances at specialist nurse clinics since 2005-06, the figures compiled for Nursing Times predict. This compares to a 39% increase in all outpatient attendances over the same period.  Read more here.

Council care better than private, says regulator


Source The Independent:
 The quality of private sector care is generally lower than in council-run facilities, the health regulator has warned.


The Care Quality Commission (CQC) annual report revealed there was a higher level of satisfaction reported by patients receiving treatment at council or voluntarily run organisations.   For more click here.

Medical Marijuana Might Slow Thinking Among MS Patients

Source Bloomberg Businessweek:

MONDAY, March 28 (HealthDay News) -- As the debate over medical marijuana use continues, a new study among multiple sclerosis patients -- who often use the drug to relieve pain and muscle spasticity -- adds to the argument that smoking pot clouds thinking skills.  Read more here.

Monday, 28 March 2011

BMSTC Summer Fayre - Saturday 28th May 1pm - 3.30 pm

Come along to our Summer Fayre which is being officially opened by Patron Paul Daniels and Debbie McGee!

Saturday 28th May - 1pm - 3.30pm

Plants, homemade cakes and preserves, crafts, gifts, tombola, books, raffle plus much much more!  Admission 50p, all proceeds to the Berkshire MS Therapy Centre.

See our events page here!

Change in Inheritance Tax laws encourages charitable giving


Source The Telegraph:
Inheritance tax laws will be changed to encourage people to donate at least part of their estates to charity as part of the Coalition's 'Big Society' initiative. Read full article here.

'Patchy' GP care failing patients, study warns


Source - The Independent
The quality of NHS care provided by family doctors is patchy and uneven and there is a danger of patients falling through the gaps, a major inquiry has found. Although much care is good, there is an eight-fold variation in referral rates of patients with suspected cancer to specialists and wide disparities in the standard of prescribing, the report by the King's Fund says.  Read article here.

MS 'link' to vitamin D deficiency may be studied


Source BBC:
 The MS Society is considering carrying out research in Scotland on a possible link between vitamin D deficiency and Multiple Sclerosis.
 Read article here!

MStival Success!


Congratulations to Clark French for organising such a successful event which raised just under £1,000!

Read article in the Reading Chronicle here!

Join us on Facebook

Join us on Facebook - go to our page and click "like" towards the top right and you will receive all of our newsfeeds :0)

Go to http://www.facebook.com/BMSTC

Thursday, 24 March 2011

Shirley Bampton - MS Specialist Occupational Therapist Clinics at BMSTC

Care and Support for people with MS living within the Borough of Reading. Shirley Bampton is the MS Specialist Occupational Therapist. Shirley can also see people by appointment at her drop-in clinic at BMSTC. 

Apointments can be made at 11.00, 11.10 and 11.20 a.m. on:
Tuesday 12th April, Thursday 9th June and Wednesday 14th September.

Appointments for approx 10 minutes but this can be longer if required.  Please book at reception at BMSTC on 0118 901 6000.

For more information on this service click here.

New - Touchscreen computer at BMSTC in reception

We have a new touchscreen computer at the Centre in our reception area for anyone wanting to try this technology. Some people who find using a mouse difficult have found this to be very useful. Feel free to come in and try it out :0)

Boars Bridge Festival 18th & 19th June - New official event website!

The Boars Bridge Festival team have created a new official website for this annual event!

The website will be updated over the coming weeks with information on the performing artists and the event programme.  We will re-post this information as it is updated.

View new website click here!

Wednesday, 23 March 2011

Listen to Tracy Beers on BBC Radio Berkshire!

Listen to Tracy Beers (MS member and our sandwich lady!) on the Reading Half Marathon BBC Radio Berkshire Broadcast.  She successfully completed the half marathon, if you would like to sponsor her please visit http://www.justgiving.com/Tracy-Beers

Interview starts at 1:28:00. Listen to interview here http://www.bbc.co.uk/programmes/p00fbyxl

(Only available to listen until Friday 25th March)

Monday, 21 March 2011

Video snapshot of Reading Half Marathon

Sir John speaks right in front of the BMSTC banner - well done Jackie - fantastic publicity! :0)

http://www.youtube.com/watch?v=Gv1NGwF6Y4E&feature=player_embedded

Thank you to everyone who ran or helped at the Reading Half Marathon!

Thank you very much to all of our runners and volunteers who took part in this years Reading Half Marathon.  You are all truly amazing!

We were delighted that our Patron Sir John Madejski agreed to officially start the race. Sir John also found time to join us in the official charities tent for a photograph and chat with our team before the race.

Keep your eyes open for coverage on BBC South and in the Reading Chronicle and Reading Evening Post this week. 

Third place in the wheelchair race was taken by able-bodied Olympic athlete and TV presenter Iwan Thomas who took part for a Channel 4 show about paralympic athletes. He finished in 84.51 minutes.  This will be broadcast in July.

It was a perfect day for the event, and we look forward to announcing how much has been raised when we receive all of the sponsorship money in :0)

Novartis Receives EU Approval For Multiple Sclerosis Drug Gilenya - Update

Source RTT News:

(RTTNews) - Swiss healthcare giant Novartis AG (NVS: News ) Monday said the European Commission approved Gilenya, which would be the first oral multiple sclerosis treatment for use in the EU.   Read more here!

West Midlands bans Sativex for people with MS

Source MS Society:

The Midlands Therapeutics Review & Advisory Committee has this week issued the first blanket ban in the UK for prescribing Sativex, claiming that there is inadequate evidence for the drug’s efficacy and safety. This flies in the face of the Medicines and Healthcare products Regulatory Agency’s decision that the drug is both safe and effective.  Read more here.

Social care 'facing funding gap of over £1bn'

Source:  BBC
Social care is facing a funding gap of more than £1bn by 2014 in England - a situation which would have consequences for the NHS, a leading think-tank says.  Read article here.

MS Society wins top science communications awards

Congratulations to the MS Society who won first prize in the Social Media category for its response to controversy over MS Research in 2010, and was named overall winner for its use of social media.   Read full article here.

Wednesday, 16 March 2011

Would you like help with your Census Form?

Do you want some help filling in your Census Form?

If so we have had an offer from the Census team to come in on Tuesday 22nd March 5 pm - 7 pm and Wednesday 30th March between 10 am to 2pm.

Please let me know if you would like to book an appointment by emailing pippa@bmstc.org :)

Monday, 14 March 2011

Request from the BMSTC Link Group

We are a volunteer fundraising group who organise the annual summer fayre and christmas fayre at the centre.  We also have a stall (usually a tombola) at other local events but this depends on having the manpower available to do it.

If you are interested in fundraising and would like to join an enthusiastic team, your ideas and help would be greatly appreciated. Please email Becky at raford@o2.co.uk or speak to any committee member at the centre. (The staff will put you in touch with one of us).

Marshalls needed for Reading Half Marathon - Sunday 20th March

Anyone want to help with Marshalling at the Reading Half Marathon? We've had a couple of volunteers who have had to pull out so we're on the lookout for some able bodied early birds that would be willing to help! It is really good fun!  Please call Jackie on 0118 901 6000 or email jackie@bmstc.org

Listen live to Yvonne Parks on BBC Radio Berkshire



Listen to our Trustee Yvonne Parks on BBC Radio Berkshire this weekend following coverage of Reading FC Footballer Chris Armstrong.  Great interview and good publicity for the Centre - thanks Yvonne for getting up so early and doing such a great job! :0)

Starts at 1:04.28 for approximately 10 minutes. Listen here.

A drug to help brain heal itself

Source: theage.com.au

" drug usually in the headlines when top athletes are found out as substance cheats could soon be helping people to recover from a traumatic brain injury.


Other research had shown EPO could have a role in future treatments for stroke, spinal-cord injury and multiple sclerosis."


For more click here.

Brain disorder 'messaging clue'


Source BBC:

Scientists say they have discovered a "maintenance" protein that helps keep nerve fibres that transmit messages in the brain operating smoothly.


The University of Edinburgh team says the finding could improve understanding of disorders such as epilepsy, dementia, MS and stroke.  Read more click here.

Charities' new challenge to DLA cut

Source The MS Society:

39 charities publish new report to counter Government arguments for removing the mobility component from people in care homes.


The MS Society joined 38 other charities this week to publish DLA mobility - sorting the facts from the fiction, a report setting out why the government's reasons for cutting the mobility component of Disability Living Allowance (DLA) for people in residential care are wrong.   For more click here.

NICE to review Clinical Guideline for multiple sclerosis

Source The MS Trust:

The National Institute for Clinical Excellence (NICE) has announced that it intends to review the clinical guideline for multiple sclerosis.


The current guideline Management of multiple sclerosis in primary and secondary care was published in November 2003. The guideline involved an extensive review and grading of the research evidence for the management of MS, from diagnosis to the treatment of symptoms.  For more click here.

.MA application for MS drug withdrawn

Source PJOnline:

Merck Serono has withdrawn its marketing authorisation application for its oral multiple sclerosis drug cladribine (Movectro) following a negative review from the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP).  For more click here.

First oral treatment for people with multiple sclerosis approved in Canada

Source Canada NewsWire:

Shown to significantly reduce relapses and slow disease progression


DORVAL, QC, March 10 /CNW/ - Novartis Pharmaceuticals Canada Inc. announced today that its new MS treatment, Gilenya™ (fingolimod), has received Notice of Compliance in Canada. Gilenya™ (fingolimod) is the first disease modifying oral therapy developed for the relapsing-remitting form of multiple sclerosis (MS) which is the most common type of the disease in adults.

Disabled Gear

DisabledGear Logo
DisabledGear.com is a FREE & easy-to-use website designed to make buying and selling second-hand disability equipment painless.

Visit site here: http://www.disabledgear.com/

Take a look at our Give a Car page!!

Giveacar works in conjunction with the largest nationwide car recycling network to coordinate the donation of cars. Any car that is donated will either be sold in a salvage auction for its salvage value, or disposed of at an Authorised Treatment Facility (ATF). Our salvage partner guarantees a return for every car we give them - regardless of condition!


View page here.

Localgiving.com

Take a look at our new Local Giving page!  Localgiving.com was founded in 2008. The pilot phase of Localgiving.com was launched in eight Community Foundations in autumn 2009. It will be rolled out across the whole of the UK by early 2011.


View page here

Work capability assessment is assessed, and found lacking

Source The Guardian:

The eligibility test for the new employment support allowance is widely condemned to MPs at a pilot scheme meeting.  Read full article here.

'MS experts in Britain have to open their minds’

Source The Telegraph:

'MS experts in Britain have to open their minds’


Last July, we reported on the battle by MS sufferer Mark Walker to have a controversial new treatment not recognised in Britain. Here, he tells how his condition has improved since having it abroad .

My wife’s reaction when she touched my feet on July 1 2010 was unexpected but very welcome. “They’re the same temperature and nearly the same colour,” Natasha announced excitedly. I should explain that my right foot has felt cold to the touch and been purplish in appearance for many years.   Read full article here.

Monday, 7 March 2011

Get £60 for taking part in an interview about Multiple Sclerosis

Survey being conducted by The Patients Voice - for more information follow this link

Boars Bridge Festival 2011 - Tickets now on sale!

Boars Bridge Festival Saturday and Sunday 18th & 19th June 2011!

A fantastic weekend of live acoustic, blues and bluegrass music!  £10.00 per ticket, includes both days!  Real ale, refreshments, marquee, stalls.  Tickets in advance only please.

We are delighted to welcome back Mike Silver and Bram Taylor along with Richard Cox-Smith, Terry StClair, Jim McClean, Tudor Lodge, Sandragon and Home Territory along with many other artists.

Tickets available from Pip at BMSTC email pippa@bmstc.org

Or via the event organiser Lynne Whiteland lynne.whiteland43@gmail.com

For more information about this event click here

My Adapted Life: Messing about in boats

From BBC Ouch!
Stewart MacLennan and his wife had planned to travel the world during their retirement years. But, due to the onset of MS, Stewart became a wheelchair user and was none-too-pleased at the service and accessibility he found on plane journeys.
So, plan B went into action: build a barge, make it accessible, and sail the canals of Europe instead :) Watch here!

Got a scrap car knocking about?!!


If so please visit the Give a Car website to see how you could donate this to charity - hopefully us ;0)

http://www.giveacar.co.uk/

MS Society Lambing weekends!

Supporting our good friends the Reading, Wokingham & Districts MS Society - please go along and support their event. Lambing Weekends at Rushall Farm.  There are two lambing weekends this year at Rushall Farm, Bradfield, on 12th-13th and 19th-20th March. Proceeds will be shared with the Bradfield Primary Project. Enjoy a wonderful day out at this organic farm in the beautiful Pang Valley.   For information please click here.

Thursday, 3 March 2011

Betty Roberts 80th Birthday Party!

It is Betty Roberts, one of our Volunteer Receptionists, 80th Birthday! She would like to extend an open invitation to anyone who would like to join her on Saturday 5th March at the Royal Oak, 39 School Green Road, Shinfield between 7 - 11pm to help her celebrate! Any enquiries please call Pippa on 0118 9016000. Happy Birthday Betty! :0)x

Tuesday, 1 March 2011

WAMSAD - Windsor Ascot Maidenhead District Sports Association for the Disabled

Welcome to WAMDSAD, one of the UK’s most active and reputable sports clubs for the disabled.


We are a high-achieving, successful and award winning club that exists to provide sporting and recreational opportunities for people of all ages and abilities in the Royal Borough of Windsor and Maidenhead and surrounding areas.  For more click here.

Disabled Golf Society


This is a link to the Disabled Golf Society which  Graeme talks about in his BBC Radio Berkshire interview :)
http://www.disabledgolfsociety.com/

BBC Radio Berkshire Interview - Graeme Robertson from Berkshire has primary progressive MS

BBC i-Player

Graeme Robertson from Berkshire has primary progressive MS. He has been named Wokingham Borough Council Sports Personality of the Year. Graeme talks about being diagnosed with MS and how it has affected his love of playing golf and many other sports. Starts at 1:58:30 ends 2:40:30 (Gr8 interview Graeme :0)  To listen click here.

MSRC Chat Rooms


MSRC Chatroom Sessions for week commencing 28th February


We are holding three scheduled, moderated chatroom sessions this week in the MSRC Chat Room.

Tuesday, March 1st 10am - 12 Noon GMT
Wednesday, March 2nd 8pm - 10pm GMT
Thursday, March 3rd 2pm - 4pm GMT

Hope to see you all there!  Click here for more.

Gene Analysis Illuminates MS Therapy Side Effect

Source Medpage Today:
Leukemia that was observed in a small number of mitoxantrone treated multiple sclerosis patients may be the result of patients' genetic makeup, Italian researchers said.  Read more here.

MS - Scotlands lonley disease.

From the BBC:

1 hour programme - MS Scotlands lonely disease.  Watch here.

Progressive MS video added to webcast

Source MS Trust:
A new clip that discusses the issues associated with progressive forms of MS has been added to the MS Trust's webcast on disease modifying drugs.


In the webcast, neurologist Professor David Bates addresses some of the most challenging questions people with MS ask about disease modifying drugs, such as when to consider treatment, effectiveness, side effects and safety issues, and how new drugs will affect treatment options.  For more click here.

Council to axe 300 jobs in cuts

Source BBC:
About 300 council jobs are being axed in Reading as part of budget cuts, a total of about 6% of the workforce.
Demonstrations took place outside a meeting of Reading Borough Council on Tuesday night, when nearly £18.8m of cuts were agreed for the coming year.  Read full article here.

Reading Libraries has two friendly book groups for visually impaired people.

Reading Libraries has two friendly book groups for visually impaired people. Each month we have a cup of tea & a biscuit & discuss a wide range of books. We listen to books on audio cassette tapes or MP3 discs instead of reading the printed version. Copies of tapes or discs are supplied by Calibre. Groups are free to join. For further info e-mail libraryevents@reading.gov.uk

New disability test 'is a complete mess', says expert


Source: The Guardian
One of the architects of the new sickness benefit system has warned it would be a mistake to start introducing it nationwide from the end of this month because of serious ongoing problems with the medical test designed to assess whether claimants are genuinely sick or disabled.  Read full article here.