Public Consultation

Please be aware of the launch of a public consultation on proposed changes to how local authorities exercise health scrutiny functions. The amendments are intended to strengthen accountability of NHS services and support effective service c...hange.

This eight-week public consultation seeks views on the content of the planned regulations. The consultation does not outline a draft version of the new regulations, but asks for views and comments on what the content of those regulations should be.  For more click here.

Multiple Sclerosis Research ‘Exercise and Physical Activity Study’

The Centre for Research in Rehabilitation at Brunel University would like to invite you to participate in this study as part of a PhD project. The research will be led by Andrea Stennett, Physiotherapist, under the supervision of Professor Lorraine DeSouza and Dr. Meriel Norris.

 You must be 18 years or older, have a diagnosis of Multiple Sclerosis and living in the community. We will be using a technique known as the Delphi Method to explore your views of exercise and physical activity. You do not have to be physically active to take part in this study.

 Your involvement is completely voluntary and would require your participation using 3 Rounds of questionnaires. We anticipate that you will have a gap of up to 2 months between each Round. Your views will be anonymous to the other participants and completely confidential.

 Ethical Approval has been obtained for this study from the School of Health Sciences and Social Care Research Ethics Committee.

 If you are interested in this research, please contact Andrea Stennett for a research pack. Please note that requesting a research pack does not oblige you to participate in the study.
Contact details: Andrea Stennett, Tel: 01895268729 or email
andrea.stennett@brunel.ac.uk

 

Bleak weather may be the source of Scotland’s MS crisis

Source The Scotsman:

EXPERTS have linked Scotland’s bad weather with the rate of multiple sclerosis, which is the highest in the world.

Scientists in Aberdeen have demonstrated for the first time why people living in less sunny places are more likely to suffer with the illness.  Read more here.

Holiday with a wheelchair in Central Europe

We have just returned from a 10 day holiday based in Gyor (pronounced gYer) Hungary with Makin Tracks. We had 9 days of hot sun and 1 day of rain.   Budapest, Vienna and Bratislava (in Slovakia) were great day trips from Gyor. We also visited a Monster fortress (60 cannon trained on the Danube and an interior the size of 4 football pitches) and the monastery at Pannonhalma, where we tasted some of the monks special liquor (*~!~*). Luckily we were also in Gyor during the National Dance Festival so saw some superb folk dancing. Excellent accommodation, good food and congenial company completed a great holiday. Photos here http://tinyurl.com/clk3bha and video of the dancing here http://youtu.be/TCAEctetsnM

 A holiday with Makin Tracks is a fantastic experience. We have been on holiday with them every year since they started. It is more like going on holiday with friends than a commercial transaction. We have been to places we thought impossible in a wheelchair - up mountains, through narrow gorges, into boats. Dave plans every excursion after thorough research, always knowing where the disabled loos are! He tells us the history and factual information wherever we visit. The hotels and meals are always good  and the travel unhurried. For more information have a look at www.makintracks.eu

Adriano Graziani and the Port Talbot Cymric Male Choir

Adriano Graziani and the Port Talbot Cymric Male Choir perform on Saturday 22nd September at St Mary's Church in Henley-on-Thames raising money for BMSTC! Tickets £15 per person.  For more information  see our website here or for tickets email pippa@bmstc.org
:0)

Disabled people let down by new social care plans for England

Source MS Society:

The Government has today released plans for the future of social care in England. Despite promises of a 'radical overhaul' and the announcement of some positive steps, the plans, set out in a Government White Paper, have largely been met with disappointment and criticised as 'empty rhetoric'.
The MS Society has joined over 65 charities in condemning the Government's decision to delay crucial decisions on funding, and the failure to outline a clear timetable for reform.  Read more here.

Scientists Pinpoint Antibody That May Be Specific to MS Patients

Source Yahoo! News:

WEDNESDAY, July 11 (HealthDay News) -- Researchers have identified an antibody found in the blood of about half of patients with multiple sclerosis that is not found in people without the autoimmune disease.

The implications of the antibody's presence aren't fully understood. But in rodents, the antibody binds to and damages brain cells that are known to be important to neurological function, according to the study.  Read more here.

Source Irishtimes.com:

The Irish team, docTek systems, comprised three students from NUI Maynooth – Donal O’Sullivan (22), Cosmin Siclovan (22) and Marie Farrell (21) – created a smartphone application to help multiple sclerosis patients manage and monitor the disease.  For more click here.

Disabled B&B Holidays in England

Limited mobility doesn't have to mean limited holiday options! We've hand-picked some of the best accessible bed and breakfasts with disabled facilities in the UK.

These top B&Bs and hotels offer accessible and wheelchair friendly accommodation that's ideal for affordable holidays for the disabled in England.  For more click here!

Talking Therapies

Source: Berkshire NHS Healthcare

Problems such as anxiety, depression, stress and phobias are very common. Talking Therapies is a friendly and approachable service that helps people with these problems.
We are here to help adults aged 18+ from Berkshire and we have a team of advisors and therapists who can help you to overcome life’s difficulties and problems and manage them better.  For more click here.

Can vitamin D reduce the conversion to MS?

Source MS Trust:

There hardly seems to be a day when the benefit of vitamin D is not being discussed in the news - to add to this, researchers in Australia and New Zealand have reported that they hope to determine whether vitamin D can stop someone from developing MS after a first episode of neurological symptoms (known as clinically isolated syndrome).  Read more here. 

Gene flaw 'explains why drugs failed to treat MS'

Source BBC:

Scientists have identified why a once-promising class of drugs do not help people with multiple sclerosis.

An Oxford University team say an genetic variant linked to MS means the drugs which work for patients with other autoimmune diseases will not work for them.  Read more here.

Want to take part in an MS Film?

We are currently developing a short documentary film project about people living with Multiple Sclerosis for an international doctor’s conference. We are particularly keen on finding people who are articulate about their current and past experiences, as we want the films to be reflective.   For more information please click here!

MS Nordic Walking Group

We are a fairly new group of Nordic Walkers, who meet Thursdays in Prospect Park at 2.15 PM. The weather has not always been kind to us this spring/summer, but we have still enjoyed the sessions and kept the spirit up. If you would like to join us, please contact Henriette (0118 901 6000).

“It is nice to be out in the open”, “The fact that we come in all weathers….”, “The poles help with the balance and give good support”, “We enjoy having a chat, while we walk”.

Would you like to be involved in the NHS Commissioning Board Special Health Authority?

Would you like to be involved in the NHS Commissioning Board Special Health Authority?  They are looking for service users, carers and members of the public to contribute to the process of CCG authorisation and establishing the health system of the future. 

They are looking for Lay Assessors to participate, alongside other panellists from the NHS and Local Authority, in the authorisation site visits to CCGs.  The panels will assess CCGs capability to deliver and follow up points arising from the earlier stages of assessment, resulting in an assessment report of the site visit. 

In the first instance the NHSCBA is looking for 12 people and will need expressions of interest returned by Tuesday 10 July to roz.davies@nhs.net or jane.burbidge@nhs.net

MPs discuss new benefits assessment for people with MS

Source MS Society:

A group of MPs met with people with MS and representatives from the MS Society and the UK MS Nurses Association last night to debate how the assessment for the new DLA, known as Personal Independence Payment (PIP), could avoid the same pitfalls as those encountered in the Work Capability Assessment for ESA.  For more click here!

Patient survey - subject of patient access to treatments that have been reviewed and approved by NICE.

National Voices Survey:

Thank you for participating in this short survey on the subject of patient access to treatments that have been reviewed and approved by NICE.

SURVEY AIM
This June 2012 survey by National Voices will collate feedback from patient groups on whether patients in England are being denied access to NICE-approved therapies.  To take part click here.

Join us on Facebook!

Don't forget you can join BMSTC on Facebook.  Simply to to our page and click "Like" on the top right and you will receive our posts in your newsfeed.

Feel free to post and comment and get involved with your community :0)

http://www.facebook.com/BMSTC

Rough Guide to Accessible Britain

The NEW Rough Guide to Accessible Britain, Edition 4.
A free, online guide including:

• Over 200 inspiring ideas for worry-free days out
• Reviews, hints and tips by disabled visitors
• Grouped by 10 regional locations – featuring Olympic venues, scenic drives and towns.
• Accessibility information including disabled parking
• New and updated content for 2012

For more click here.

New Pathways Magazine!

Source MS Resource Centre:

New Pathways is our exciting full colour, 56 page bi-monthly magazine, filled with up-to-date stories, therapies, exercise, diets, medications and so much more.  For more click here.

Botox reduces tremors in MS Patients

Source News.com:

The anti-wrinkle treatment Botox has shown promising results as a treatment for multiple sclerosis patients suffering from tremors. 
  

TREATMENT with little more Botox than that used for wrinkles significantly reduced patients' upper limb shaking, The Royal Melbourne Hospital study found.


Read more: http://www.news.com.au/breaking-news/national/botox-reduces-tremors-in-ms-patients/story-e6frfku9-1226414845666#ixzz1zYnJhIpi

It's a family affair - for the families of people with MS

Source MS Trust:

“I think illness is a family journey, no matter what the outcome. Everybody has to be allowed to process it and mourn and deal with it in their own way.”
- Marcia Wallace
(Actress, comedienne and the voice of Edna Krabappel on the animated series The Simpsons)

 For more click here.

Newbury Mobility

"We are based in Newbury Berkshire and operate a local mobility company working within approximately a 40 mile radius, this enables us to give the very best customer service whilst keeping our overheads and prices low. 2nd hand Stairlifts - Scooters - Wheelchairs are our specialty."

( Note from Pip: This company also specialises in second hand stairlifts from around £2,500 which is very competative :0)

For more see their website here!

Living with Fatigue?

Source MS Trust:  Feeling exhausted all the time?

You may not know that fatigue is one of the most common symptoms of MS, so it’s not unusual to experience overwhelming tiredness or a complete lack of energy.

... Want to know how to maximise your energy, or get some ideas on how to use the energy you do have more effectively?

Living with fatigue is full of helpful suggestions to help reduce the impact fatigue has on your daily life.

Read online, or order for free at...

www.mstrust.org.uk/fatigue

Calling all Marshalls!

Walking for Miles will be taking place on Sunday 9th September starting at the River and Rowing Museum in Henley-on-Thames.

If you would like to help with registration or marshalling, please do get in touch with Jackie by calling 0118 901 6000 or emailing jackie@bmstc.org

For further information about the event and for registration please see our events page here!