'Scorecards' to end inequality over NHS drugs

Source The Guardian:

NHS "scorecards" are to be introduced to tackle the regional disparity of medicines and treatments.

Under the scheme, expected to be launched before autumn, hospitals will have "no excuse not to provide the latest approved drugs and treatments", the Department of Health said.  Read more here.

Our patron, Paul Daniels and his wife Debbie Mcgee, joined supporters of the MS Centre last Monday for the launch of the Reading Half Marathon 2013. The Centre will be next year's top tier local charity and we are now looking for runner to make up the team.

For more information on the Reading Half Marathon click here.  If you would like to run on behalf of BMSTC please email Jackie@bmstc.org or call Jackie on 0118 901 6000.

Just over a week until Walking for MileS 2012!

Counting down to this years Walking for MileS event! Register before 11.00 pm on Thursday the 6th September. We look forward to seeing you there! :0)

Register here!

"Paralympics can change attitudes" - Bring on the Games!

Source BBC:

"This is a once in a lifetime opportunity to change these attitudes in the UK and, beyond the Games, we have got to keep a lot of the issues around disability in the public eye.

"I know for a fact that with the Games creating these celebri...

ties [of Paralympians], that this is the chance to do it."

The Scope survey last month suggested many disabled people in Britain felt media coverage about benefit cheats had negatively affected attitudes towards them."  Read more here.

Update on Westmead

Article forwarded to us by Heather Cresswell from the Reading & Wokingham Districts MS Society:

Westmead Update: August 2012

Introduction

Lots has been happening since the last update, with much still to do.

We have identified a possible new site for a Westmead replacement building in Woodley and an additional funding application has been made. Negotiations to date have gone well but there is still more to be done if we are to get all we want in the projected extension.

We have also had further discussions with the Neuro rehab team around Westmead offering a follow on rehab programme and again this seems to be progressing well.

Below you will also find a summary of several other areas that we are currently exploring – sports and exercise; hydrotherapy and a new post of outreach/development worker.

And so to the summary:-

The Building

Ø A bid has been submitted for an additional £250,000. We should know the outcome in the next month or so. There is very strong competition for this funding but we feel our bid is a strong one too.

Ø  The bid for funding includes areas for community use. The intension that is built there will have areas specific to Westmead but the whole complex will be seen as a community hub. The funding bid reflect this.

Ø Nearby is Alexandra Place (extra care housing complex) with facilities that we anticipate being able to access. These include an exercise room; therapy room; IT suite and community café.

Ø Including in the funding bid is specialist equipment to go in the exercise room at Alexandra Place. These include passive exercise machines which will be used for rehabilitation purpose – the PCT will be organising exercise classes for individuals who have had strokes, heart attacks etc or who need to build up cardio-vascular/core strength. Discussions are ongoing as to access by other groups or individuals but it is anticipated that this will be available to those attending Westmead.

Ø Preliminary plans have been drawn up for the extension but as always, the devil is in the detail. Discussions are ongoing and when parties are happy, the plans will be shown at Westmead and comments invited.

Ø A building conditions survey has been commissioned and the results should be with us within the next few weeks. The report will also give an estimate of the life of the building to which the extension is to be added.

Reablement as part of Westmead

If you would like further details please talk to David Brown at the centre.

Ø Fruitful discussions have taken place with the Neuro rehab team. As a result, staff at Westmead will be shadowing staff in the team and will be offered training by the neuro rehab team in various interventions – all with a view to Westmead staff continuing with the rehab regime at the centre, under the supervision of their staff.

Ø This rehab programme will be for six weeks at no charge to the individual. Not all people receiving input from the neuro rehab team will be suitable however and the programmes will be carefully structured. The opportunity to access this programme will be open to all. Wokingham’s eligibility criteria will not apply for this six weeks.

Ø During this six week period there will be an assessment as to whether the individual has an eligible need (remember Wokingham’s criteria is set at critical). If eligible and the individual wishes to continue, they will be funded accordingly.

Ø The spin off for Westmead is that the staff will then be able to offer goal focussed rehab programmes to existing and new attendees.

Ø Staff from the Neuro rehab team will keep an oversight on the Westmead staff rehab activities and will offer advice and guidance.

Sports/Exercise

Ø Discussions have been ongoing with the Sports development staff. As a result we are exploring two possible developments, both to be sited in the centre. These are

o   A range of exercise classes specifically designed for Westmead attendees but with an invitation to any family member to join in. If not full, the opportunity to join in will be offered to interested individual outside of Westmead

o   A range of exercise classes open to all but with the opportunity for Westmead attendees and their family to join if they wish.

Ø These classes will be either no cost or low cost and if successful will be repeated.

Ø Please let staff know of any particular exercise/sports you might like to sample. Adam (sports development) is quite flexible!

Outreach/Development worker

Ø Funding has been agreed from the Prevention budget to develop an outreach role. The funding application came about as the result of discussions in DOSG. The question was asked - What happens to those who either don’t meet our eligibility criteria for day activities or who go through the rehab period and exit having been assessed as not eligible?

Ø The post holder will work with these individuals (should they choose) in either identifying possible alternative resources or even setting up small groups with others in the voluntary sector. The role will evolve over time but will be focussed on what those individuals and their families identify as needing for themselves.

Ø Further details as to the exact amount and any conditions attached to the funding have yet to be received but it should be possible to appoint to this post within the next few months.

Hydrotherapy

Ø Again as the result of discussion in DOSG, we have been looking at what opportunities there might be in the area for individuals to access hydrotherapy. Two possible candidates have been identified and two of the DOSG team have visited. They are the Royal Berkshire Hospital (RBH) and Ravenswood Village.

Ø RBH are currently reviewing the use of their pool and seem likely to expand its use. At present they are looking at the needs of those in hospital and are wanting to expand its use in-house. They are open to the idea, however, that if there are spare slots then these might be made available to groups and individuals outside of the hospital. They hope to conclude this review in the next month or two.

Ø Ravenswood consists of a group of residential home for adults with a learning disability in Finchampstead. Based on a village model, it also has additional facilities. These include a hydrotherapy pool and gym. As with RBH, they are reviewing the use of the pool and seem very open to the idea that it might be used by outside groups/individuals when not required by them. It is about to undergo refurbishment and will be out of action from September, opening again in January 2013. We hope to continue the dialogue during this period.

Membership of DOSG

As before, we would invite volunteers to join DOSG – either from those attending the centre or from family members.

If you are interested, please let David Brown or a member of staff at Westmead know.

Our thanks in anticipation.

Any comments/thoughts would be equally welcome.

DOSG.  August 2013.

Do you have Secondary Progressive MS and would like to take part in a Survey for a £40 reward?

Do you have Secondary Progressive MS? Like to take part in a survey for a £40 reward (which you could choose to donate to a charity of your choice, even BMSTC! ;0) Then read on: "For the research we are looking for patients that have Secon...

dary Progressive Multiple Sclerosis (SPMS) preferably with a EDSS score of under 7. ( we do appreciate that some patients may well not know if they have SPMS but the majority of people that have had MS over 10 years will have progressed to it from the RRMS.) We are interested in speaking with both patients who experience relapses within their SPMS and those who no longer experience relapses.

As part of the research we are asking them to do is take part in an interview over the telephone and using a webcam. They will be interviewed by a researcher from Adelphi International Research. (We can send them a webcam if they don’t have one and it is theirs to keep afterwards). The purpose of this study is gain an in depth understanding of MS from the perspective of the patient, looking at the impact of the condition and medication on their quality of life with an aim to improving this. The data collected from the research will then be used to inform the pharmaceutical company in its current product development strategy.

We would like to reassure the patient that their identity will be confidential and although someone from the pharmaceutical company sponsoring the research may observe (via webcam) there is absolutely no way that taking part will affect any treatment they receive or any benefits.

The interviews need to take place from Wednesday 22nd – Wednesday 29th August if possible although Adelphi are able to do interviews till the end of the w/c 27thif necessary.

As a thank you for the patient’s time we are offering £40 which can be given to them as either a Amazon voucher or cheque.

If anyone is interested please could they contact me personally by calling me on 07968 631938 or on 01189474956. ( I am the local contact and recruiter for the research for DeFacto Research who are working for Adelphi Research).

Tessa Higgins - tlhiggins@hotmail.co.uk

 

For more information on DeFacto Research click here.

Shirley Bampton has left her post as MS Specialist OT

Hi everyone,

I am very sorry to inform you that I am no longer working as the MS Specialist OT for Reading Borough Council.

I have been seconded to work on a project for a year and was hoping to confirm who would be replacing me however no one has been appointed yet.

If you need to refer to Occupational Therapy you will need to refer through the single point of access on 0118 9373747.

The past 4 years since I have been in post have been very rewarding and I shall miss being part of the MS world so to speak.

Kind regards and best wishes to you all.

Shirley Bampton

Remyelination in MS

Source MS Trust:



Anna Williams covers her research into preventing and repairing damage in multiple sclerosis, including use of stem cells.

For more click here.

Drug reporting positive results for MS temporarily withdrawn from market

Source MS Society:

Makers of the cancer drug, alemtuzumab, which has been shown to benefit people with relapsing-remitting MS have reported they are applying for a licence for the medicine to be available to treat people with MS.

For more information click here.

Adriano Graziani and the Port Talbot Cymric Male Choir

Professional Opera singer Adriano Graziani and the Port Talbot  Cymric Male Choir will be performing on Saturday 22nd September at St Mary's Church, Henley-on-Thames to raise money for BMSTC and the Henley MS Support Group!   Tickets will be available soon from BMSTC at £15 each.   In the meantime, for further information please see our events page here!

Walking 4 MileS 2012 - register on-line for this event!

Register on-line for this year's Walking 4 Miles Event, Sunday 9th September starting from the River and Rowing Museum, Henley-on-Thames.

Routes include:

• The Marsh Lock Wheelchair Friendly route - 1.5 miles
• The Six Miles Stroll - yep you guessed it 6 miles!
• The Half Marathon Walk - yep you guessed it againg 13 miles!!

Register on-line today here!  or for more information see our events page here!

Mizuno Reading Half Marathon 2013

We will be the Top Tier Local Charity for next year's Reading Half Marathon. This means that the Berkshire MS Therapy Centre will be moreprominent at the event and have more Gold Bond places to get an even bigger team. Please email jackie@bmstc.org  if you want a place or know someone who would like to be part of the team:)

For more details on the Reading Half Marathon click here.

NICE publishes guidance on urinary incontinence in neurological disease

Source MS Trust:

The guideline recommends that detailed assessments should be offered to people who have neurological conditions including MS
The National Institute of Health and Clinical Excellence (NICE) has published Clinical Guideline 148 on urinary incontinence in neurological disease: management of lower urinary tract dysfunction in neurological disease. The MS Trust contributed as a member of the Urology User Group Coalition.  For more click here.



Survey - Are you a wheelchair user? Are you a travelling companion of a wheelchair user?

If so I would like to invite you to spend 10-20 minutes to take part in an anonymous research study to investigate the attitudes, opinions and experiences of wheelchair users and their travelling companions relating to the U.K. overland rail network. It does not cover private tourist lines, the London or other underground networks, or trams.  For more click here.

New MS Register data gives insight into employment and depression levels

Source MS Society:

The UK MS Register, launched in May 2011, has published its first set of data.
The research shows that the number people with MS who are in employment is much lower than the general population, and about half experience anxiety or depression.  For more click here.

West Berkshire Neurological Alliance Continence Survey

From West Berks Neurological Alliance:
Dear colleagues,

Earlier this year we held a small focus group, on 'Living with incontinence in Berkshire West'. The problems raised were many and serious and the discussions were both riveting and ...

depressing. A report was produced for local service commissioners, who are aware that significant improvements must be made in the ways people affected by incontinence should be helped. To push along these developments we now need larger amounts of data, so once again have combined forces with West Berkshire Local Involvement Network (LINk) and agreed a postal survey we are about to launch.  See survey here.

For anyone who is interested we can provide hard copy of the attached explanatory letter and form, with a reply-paid envelope, so participation is both free and anonymous. We can either post these to anyone who requests one or supply you with as many survey forms as you may need to forward to people who you believe could be interested. Each survey pack is in a stamped A5 envelope that has not been sealed, allowing you to insert your own covering note should you wish, while saving you the cost of posting out the survey. Of course, anyone may print and complete a survey form by downloading the attachment, but that way there is no pre-paid return envelope.

Please would you consider the great value that will attach to us getting a good response to this important and timely survey and take a few moments to think about how many survey packs you will need to forward to those of your members who may wish to take part? There is no postage cost to you or your members. Everyone should be most grateful if between us we can improve the lives of the many individuals living with incontinence.

Regards,

John

John Holt
Liaison Officer
West Berkshire Neurological Alliance
01635 33582
www.wbna.org.uk

Sportability - sport for all!

Enjoying the Olympics? Well sport can be for everyone if you would like to get active with Sportability!

"People with conditions such as spinal cord injury, stroke, MS and others, are able to participate in a whole range of sports - scuba diving, sailing, archery, angling, abseiling, quad-biking, gliding, canoeing, clay pigeon shooting, go-karting, land-yachting, wheelchair tennis and many more."

Dame Kelly Holmes MBE Double Olympic Champion says ""I have seen how important sport can be in people's lives, both as athletes and fans. But the concept of using sport to rebuild a life shattered by paralysis adds another perspective. The work that Sportability does is not only fun, but it helps people to redefine themselves and achieve far beyond the confines of the wheelchair."

 For more click here!

MS Trust Open Door newsletter

Source MS Trust:

A free, quarterly newsletter for people with multiple sclerosis, their family and friends and supporters of the MS Trust.

For more click here.

The Men in Black from AB Walker & Sons choose to support BMSTC!

AB Walker & Sons has pledged to raise funds for the centre over the next 12 months and will also be taking part in events including the forthcoming Walking for Miles event in Henley on September 6.  Read more here!

CBT helps adjustment to MS

Source MS Society:
A trial funded by the MS Society has shown that cognitive behavioural therapy (CBT) is better than supportive listening for helping people adjust to the early stages of MS.  Read more here.

(Note: BMSTC has teamed up with NHS Talking Therapies who can deliver face to face CBT here at BMSTC or at another location that is convenient for you. For more details please see blog post http://pips-bmstc.blogspot.co.uk/2012/07/talking-therapies-working-together-with.html )

NHS is failing patients with neurological conditions, claims report

Source The Guardian:

People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson's disease suffer "neglect" by the NHS, claims a report by an alliance of charities representing patients. Read more here.

Unique cell type in multiple sclerosis

Source UPI.Com


BETHESDA, Md., Aug. 1 (UPI) -- U.S. researchers said a type of immune cell that contributes to multiple sclerosis may help in the development of new drugs to treat autoimmune disorders.
Dr. Bibiana Bielekova, an investigator at the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, said the discovery helps define the effects of one of the newest drugs -- daclizumab -- under investigation for treating MS.  For more click here.

Source Newbury MS Society Newsletter:

Happily Disabled - Free e-book "Overcoming unhappiness in disability with 21 chapters portraying: caring, peeing and catheters, cooking and eating, walking to wheelchairs, normality, transport, sex, falling, anxiety and stress, memory and forgetfulness, invisibility and freedom, anger, pain, relationships and families, weakness and fatigue, depression, happiness and sadness."  For more click here.

Move it for MS DVD giveaway

Source MS Trust:

In the spirit of sporting events the MS Trust is giving away 10 copies of our award winning Move it for MS work out DVD featuring Mr Motivator. In order to win a copy, like and share this post and tell us in the comments why you should win a copy. 10 winners will be chosen and sent a copy of the DVD. For More about MS exercise visit http://www.mstrust.org.uk/information/exercises/

New Drug Could Treat Alzheimer's, Multiple Sclerosis And Brain Injury

Source: Drug Discovery Online:

A new class of drug developed at Northwestern University Feinberg School of Medicine shows early promise of being a one-size-fits-all therapy for Alzheimer's disease, Parkinson's disease, multiple sclerosis and traumatic brain injury by reducing inflammation in the brain.  Read more here.

Benefit cheats 'colour attitudes to disabled people'

Source: The BBC

Many disabled people in Britain feel media coverage about benefit cheats has negatively affected attitudes towards them, a survey suggests.

Almost half of the 500 disabled people and carers polled for charity Scope said attitudes to them had worsened.  Read more here.

The uncertainty continues for many MS nurses

Source: MS Trust:

The MS Trust has always been committed to the MS specialist nurses and therapists because we know how much difference they make to people living with multiple sclerosis.
The nurses are there at the end of the phone, at the clinic and many are able to make home visits. They understand what its like to live day to day with MS and can give expert advice on symptoms, therapies, treatments – any issue, big or small. They are passionate about making sure that people with MS can manage their condition, get access to the care and support they need and can focus on living their life rather than dealing with their disease.  Read more here.