Tuesday, 30 April 2013

Brambles Care Home Closure



 Source Brambles:

We advise - with great regret that it is necessary for MS Respite & Care Services Limited to close the existing MS Respite care service at Brambles Respite Care Centre.  Read more here. 

Thursday, 25 April 2013

The e-Health Impact Questionnaire for people with MS



Health websites have conventionally presented information in the style of scientific facts; however, experiences of health are increasingly exchanged by patients and carers online. Patient experiences of health have been incorporated into mainstream health websites and stories or testimonials about other people’s health can currently be accessed on NHS Choices, national and local charitable groups and private company websites. It is important to understand what impact these health websites have on patients and carers.
A research team in the University of Oxford are researching the effects of sharing online patient information. They wish to find the best way to incorporate people’s experiences into health websites. One component of this research involves developing a questionnaire (The e-Health Impact Questionnaire) which asks people about their views of online information and the impact it may have on them. They would like your help to find out whether the questions are easy to understand and accurately reflect the effects of using health websites among people who have Multiple Sclerosis.

The development of the e-Health Impact Questionnaire is being carried out in collaboration with a number of study groups in Northumbria, Warwick, Oxford and Scotland. Together, they hope to incorporate this questionnaire in clinical trials in the later stages of the study. It is therefore important to establish if the questionnaire is suitable for this purpose before the trials commence.

This research will help the Programme to make policy recommendations about how personal experience information can best be used in health websites to improve patient support and well-being. The Programme is funded by the    National Institute for Health Research.
Can you help with this research?
The research team are asking people who have Multiple Sclerosis, are aged 18 or over and have access to the internet to take part in this questionnaire. You must also live in the United Kingdom.

What will taking part in this study involve?
To take part in this study, you will need to complete an online questionnaire. Participants are asked to complete a set of questions asking about their general attitudes towards health-related websites. They are then asked to browse a health website and answer a set of questions relating to that website. Participants will be asked to repeat this task after a period of two weeks. This will take 20-25 minutes on two separate occasions.

Please click on this link for further information and to take part in the questionnaire: Click here to take the survey.
If you would like to contact the research team, you can do so by emailing Laura Kelly at laura.kelly@hmc.ox.ac.uk

New BMSTC Counsellor starting soon!

We are delighted to announce that we have a new Counsellor, Emma Benjamin, who will be starting at the Centre very soon.

Emma will see people by appointment here at the Centre on Tuesdays between 2pm and 7pm.  She is also able to see people at her own clinic in Reading on a day or time more convenient to you if you would prefer to see her outside of the Centre.

More details will follow very soon.

Wednesday, 24 April 2013

Thank you to all of our London Marathon Runners and of cours "Our Tracy"

Photo: From our Tracy! "Thanks so much to all of you for your fantastic support, encouragement & sponsorship of me for the London Marathon on Sunday.  I was thrilled & honoured to be running for the Centre & was determined not to let you down on the day.  I was aiming for a time of under 6 hours as my husband had promised me an extra £100 in sponsorship if I could do it.  So, ever the fundraiser (!), I had my eye firmly on that extra prize & was delighted to finish in 5.53.46!  It was a fabulous day, with great support from the crowds, & my body has held up pretty well (I’m still walking!).  Here are a few photos to give you a flavour of the day!  If you would like to sponsor me, there is still time as my fundraising page will remain open for a little while longer at http://uk.virginmoneygiving.com/TracyWatkinsVLM2013  Many thanks again Tracy x"
Thank you to the BMSTC team of London Marathon runners who took part last Sunday.  What an event it was and full of emotion!

We are absolutely thrilled to let you know that Tracy completed the Marathon in 5.53.46 which was an amazing achievement!  Here is a message to you from her:

" Thanks so much to all of you for your fantastic support, encouragement & sponsorship of me for the London Marathon on Sunday.  I was thrilled & honoured to be running for the Centre & was determined not to let you down on the day. 

I was aiming for a time of under 6 hours as my husband had promised me an extra £100 in sponsorship if I could do it.  So, ever the fundraiser (!), I had my eye firmly on that extra prize & was delighted to finish in 5.53.46!  It was a fabulous day, with great support from the crowds, & my body has held up pretty well (I’m still walking!).   

If you would like to sponsor me, there is still time as my fundraising page will remain open for a little while longer at http://uk.virginmoneygiving.com/TracyWatkinsVLM2013  Many thanks again Tracy x"

MS Information Day success!

Thank you to everyone who came along last Friday to the the MS Information Day focussing on Fatigue.  Thank you also to all of our volunteers, speakers, exhibitors and Rivermead Leisure Centre who supported the event.

We were delighted to welcome 150 guests and 20 exhibition stands.  our special guest speaker, Alastair Hignell CBE, gave a truly inspiring talk and finished the day off perfectly!  There will be coverage of the event in this weeks Reading Chronicle and Reading Post

Scientists find way to turn stem cells into brain cells

Stem Cells
Source MS UK:

Scientists have discovered an antibody that can turn stem cells from a patient's bone marrow directly into brain cells, a potential breakthrough in the treatment of neurological diseases and injuries.

For more click here!

Disease modifying treatments

Source MS Society:
Have you experienced difficulties with accessing disease modifying treatments in your area? If so, and you’d be willing to speak to the media about your experience, please drop pressoffice@mssociety.org.uk a line. Thanks!  For more information click here.

Thursday, 18 April 2013

Tracy's Marathon Challenge



Tracy has gone to London today to pick up her London Marathon number for Sunday, she is so excited to be running for BMSTC!  Here is a little message from her!

"Thanks to all the BMSTC members, supporters, staff & volunteers for your amazing support, sponsorship & good wishes ahead of this Sunday's London Marathon. I am ready to go & am very proud to be running for you! If you would like to sponsor me, please visit my fundraising page at http://uk.virginmoneygiving.com/TracyWatkinsVLM2013
Many thanks Tracy x :)"


Go Tracy, we're all so proud of you and know you can do it! :0)



MS Information Day - 19th April (tomorrow!)

We still have a few places left for the MS Information Day tomorrow.


The event is being held at Rivermead Leisure Centre, Richfield Avenue, Reading and registration is from 9.30 - 10.00 a.m.  We have a number of guest speakers, including Alastair Hignell CBE.

There are also 20 Exhibitors who will be promoting their various services.

If you would like to book a place please email pippa@bmstc.org


BMSTC 2012 Annual Report and accounts are now available!

Read our 2012 Annual Report and find out what BMSTC with help from our many supporters, friends and volunteers got up to during 2012!

Our directors report and full audited accounts are also available to download if you would prefer to see our activities in greater detail. Click here! :0)

Research Priority Setting

Source MS Society:
The Research Priority Setting Partnership has reached its latest stage. After inviting suggestions from everyone at the end of last year and earlier this year, the responses have been narrowed down to over 60 specific topics. What the Partnership organisers need now is everyone’s vote on which of these topics have the greatest priority for you, individually. The way to go about this is easy, click here for more!

Wednesday, 10 April 2013

MS Information Day 19th April - still a few places left!

Come and join us for an informative day discussing strategies and techniques for coping with MS and Fatigue on Friday the 19th April at Rivermead Leisure Centre in Reading.

A number of speakers will be presenting various topics throughout the day and we have 20 exhibition stands for you to browse. 

We are delighted that Alastair Hignell CBE will be our special guest speaker to round off the day.

This is a FREE event for people with MS and their families, tea/coffee and lunch will be provided.  For more information see our events page here.   Health and Social Care professionals there is a nominal fee of £30.00.

To book a place please or find out more email pippa@bmstc.org


MS Trust funds research into the transition to secondary progressive MS

Source MS Trust

The MS Trust is putting out a call for research proposals that will examine people’s experiences of the change to secondary progressive MS.

The research project will explore issues around the transition between relapsing remitting and secondary progressive MS from the perspective of both the person living with the condition and the specialist health professionals who work with them.   Read more here.

MS National Therapies launch new look website

The MS National Therapy Centres launch a new website!

Take a look to find out about other MS Therapy Centres throughout the UK.  Click here!

Disability payment changes begin

Source The Guardian:

Reforms to disability benefits will end the 'ridiculous' system that gives people lifetime awards, Iain Duncan Smith has said as the disability living allowance is replaced by the new personal independence payment (PLA).  Read more here.

Tell me about your pain......

"Tell me about your pain..." Pain in MS (PiMS study). Research shows that many people with MS experience different kinds of pain. International researchers at King’s College London want to know more about this from your point of view.

To find out more about this study and would like to receive a participation information sheet, please contact
Anthony Harrison at anthony.harrison@kcl.ac.uk or call / text leaving your name and number on 07936 448 926.

 Research Ethics Committee number: PNM/12/13-65
 
You can also find out more on the MS Society website here.