Friday, 30 July 2010

LDN needs your help!

We LDN advocates need your help. Do you remember the petition we sought signatures for? Well, it was handed in to 10 Downing Street back in December, with 13028 signatures. Now that the new government has settled in it is a good time to take the petition to the House of Commons. Originally Stephen Crabb (Tory) was going to do this but he is now a Tory party whip and can no longer do so, though he is still very supportive. Nia Griffiths (Labour) has kindly taken over this task. As this is a cross-party issue we need as many MPs as possible to support Nia. MPs almost always only respond to their own constituents. So please, will you write to your MP and ask him/her to support Nia, LDN and therefore us. We have prepared a template letter which includes the wording for the petition – if you wish to use this letter please contact me at silvia@mjsmith.plus.com and I will send you a copy.
Thank you all for your help. I know many of you are already taking LDN and feeling the benefit. Please help to make the wider population and the government aware and push them into action.


Silvia Lane
http://www.ldnhilft.org/
Dr.Chris and LDN

Thursday, 29 July 2010

Acupuncture on Saturdays!

Ron Piercy will be offering Saturday morning Acupuncture appointments from the 7th August here at the Centre.  If you're interested in booking please call us on 0118 901 6000.

Wednesday, 28 July 2010

Seriously ill or fit to work?

The Independent report on the new benefits system with a quote from the MS Society's Head of Campaigns: "Under this assessment system, more and more people are being found 'fit to work' when in fact they are living with severe health symptoms and disabilities."

To read article click here

Doctor calls costly therapy "robbery"

From the London Free Press:

Clinics charging multiple sclerosis patients thousands of dollars for an unproven treatment are basically stealing, an internationally recognized stroke researcher and Robarts Research Institute scientist said Monday.
“That is robbery. . . . It is quackery because nobody knows yet if it works,” said Dr. David Spence, director of the Stroke Prevention and Atherosclerosis Research Centre in London.  Read full article here.

New Personal Assistant Matching Service (PAMS) from Ryder-Cheshire Volunteers (Reading)

PAMS is for adults with disabilities, who use Direct Payments to pay for their care needs. The service was launched on 19 July at the Direct Payments Users’ Forum.



Ryder-Cheshire Volunteers (Reading) receives funding from the Department of Health and works in partnership with Reading Borough Council on this project.
When a disabled person is referred to PAMS, we will aim to match them with a suitable Personal Assistant whom they can employ. Our aim is to offer greater security when recruiting support for personal care needs.


In our first 3 months we accepted 7 people to progress to being ‘Approved Personal Assistants’. Some are already qualified to NVQ level and some, although unqualified, are also caring, dependable and willing
to learn. They must all pass basic training courses in social care provided by Reading Borough Council.
To find out more about our service please, contact: Jill Hunt, PAMS, Ryder-Cheshire Volunteers (Reading), 448 Oxford Road, Reading, RG30 1EE.


Tel: 0118 948 7042. Email: jill.hunt@rcvreading.org.uk

Tuesday, 27 July 2010

Queen's Award for Voluntary Services

Please find below a weblink and webpage with all the information required to nominate an organisation for the Queen's Award for Voluntary service - the MBE for Volunteer groups. A brief summary:


 
• this is a rolling programme, but we understand that organisations are considered for the following year if their nomination is received by early September

 
• a nomination may be kept in a nomination pool for 3yrs, being considered.

 
• awards are published on 2nd June each year (anniversary of Her Majesty's coronation). Groups are told 2 wks before and must keep it secret until 2nd June
 
• You cannot self nominate, that includes any volunteer, paid staff member or trustee of your organisation.
 
• However, we have looked at the guidance and application form and the nominee will need help from the organisation to complete the form
 
Other criterion:

 
• The majority of the group must be volunteers, and more than half the volunteers must have the right to live in the UK.

 
• Any group of two or more people doing volunteering work that is a social, economic or environmental service to the local community can be nominated for the award. In order to be nominated, volunteer groups should do work that:
  •  provides a service and meets a need for people living in the local community
  •  is supported, recognised and respected by the local community and the people who benefit from it
  •  is run locally
• Also, volunteer groups should have been running for three years or more.

 
• You can complete the form electronically, but it must be printed and submitted as hard copy.

 
All further guidance can be found on the website and on the apllication form and guidance notes.  Click here. 

 

Buy.at BMSTC Webshop!

If you shop online why not try using our webshop?  We get commission on every purchase you make without it costing you any extra!  Have a look to see the extensive list of retailers where you can make online purchases and support BMSTC at the same time.  Your retail therapy can help to support our physiotherapy!  Okay, okay, I know - that was bad wasn't it! ;)

Visit our webshop here!

Everyclick! Raise money for BMSTC when you search on the internet!

Use Everyclick to raise money for BMSTC each time you search the internet! It doesn't cost you a thing and we get paid for time you click search! Everyclick is a technology company that has created more ways to give to all 200,000 UK charities. Everyclick was voted Website of the Year 2008 and a Tech Media Top 100 company 2009.

Follow this link and save it as your favourite and us it as your search engine to start raising money every time you search the internet!

Art and the brainKate Kellaway admires an exhibition of artworks exploring the experience of neurological damage

From the Observer - Sunday 25th July 2010:
If you were to stumble on Brainboxes and Boundless Books at Hackney Museum in east London, the first thing that would strike you is the affinity between the artworks on display. For this dazzling, small-scale exhibition is the visual equivalent of a conversation.  To read full article click here.

In the chair - Tony Kennan of the MS Society

From Third Sector Magazine:
Tony Kennan
He discusses revolts, incorporation and payment of trustees with Andy Ricketts
Tony Kennan got involved with the MS Society because his wife 'volunteered' him. He has been involved with the society "for 30-something years" since that day, and has been chair of the charity for the past five.


To read full article click here.

Monday, 26 July 2010

Kerri - 4 months post CCSVI

Another video from Kerri - very interesting!  To view click here

MS in children

Introduction



Multiple sclerosis (MS) in children is being recognized with increasing frequency. The first descriptions of MS in children were published by Charcot between 1829 and 1849, though it was not for another 50 years that MS in children was again described in the literature (Hanefeld, 2007). There are now several national programs focused on the research and clinical management of children with MS. Recently, an International Pediatric Multiple Sclerosis Study group was constituted with the goal of fostering collaborative efforts (for more information, email: info@ipmssg.org).
 
To read full article click here.

Opinion Health Survey

Opinion Health, a healthcare market research firm based in the UK, is looking for people diagnosed with Multiple Sclerosis to complete an online survey. The survey is about 30 minutes long and is designed to gather your feedback on the different types of drug delivery systems available. A reward of £10 will be posted t...o each person who completes the survey after the study is over— or you can specify that the reward be donated to the patient group of your choice (Pippa: e.g. BMSTC!! ;). All responses will be confidential, and all information given will be studied in aggregated form only, and will then be deleted at the end of the study period. At the end of the survey you will be asked to fill in address details for us to send the reward cheque. The survey is due to close on Sunday 9th August, 2010, but we would appreciate any replies to the survey before that date, to establish some early trends. You can take part in the survey by clicking here.

Skin - the key to medical cures?

From the BBC webiste:
Skin is the body's largest organ.  It already can be harvested to provide extra skin for burns victims and to grow cells that form cartilage and muscle.

But as scientists delve deeper into its layers, it is becoming clear that the skin might in the future hold the key to curing a range of conditions, from cancer to spinal cord repair.  For more click here.

Church supports MS Stem Cell Project

Research being carried out in Bristol into the medical use of adult stem cells to help multiple sclerosis sufferers is being funded by the Catholic Church.
The church is opposed to embryonic stem cell research because it involves the destruction of embryos, but it supports the use of adult stem cells, which are found in the bodies of all humans. For more click here.

MS Society shaping the future of respite care.

On 9 June 2010 the MS Society’s Board of Trustees decided on the new direction for the Society’s respite care strategy, following the respite care review.
Our new approach will help us reach more people affected by MS, wherever they live in the UK, and support them to access the short breaks and respite care they want. To read full article click here.

Skydive!

On Sunday 11th July, Steph Cole and her friends Charlotte and Hardy took part in a skydive to raise funds for the Centre. Despite their initial fears of jumping from an aircraft above8,000 feet, they all made the jump and landed safely and were thrilled with their achievement. Altogether they raised over £600 for the ...MS Centre which they chose to support as Steph has someone very close to her who suffers from MS. A huge thank you thinking of us, all the money raised will go directly to providing physiotherapy for the MS community

Thursday, 22 July 2010

University conference to study brain cells

From the MS Trust website:
Neuro-scientists from around the world are gathering at the University of Portsmouth this week.
More than 80 of the world's leading specialists are attending a conference to share knowledge about the latest developments in brain cell research.
It's the first time the university has hosted the annual conference of the Anatomical Society of Great Britain and Ireland.  For full article click here.

Scottish vitamin D summit captures international attention

From the MSRC website:
Shine on Scotland campaigners held productive talks with the Scottish Government yesterday as planning continues for the Scottish Summit on Vitamin D and MS which will take place in Glasgow in September.Cabinet Secretary for Health and Wellbeing Nicola Sturgeon will open the event at which international researchers and scientists will be present to discuss the latest research on vitamin D and the implications for public health policy in Scotland.  To read full article click here.

Listen again to BBC WM on Helen Ley Respite with Simon Gillespie

Click here to listen again to this radio programme.

Scientists link gut bacteria to MS

Source The Press Association
(UKPA) – 2 days ago
A bug that causes inflammation in the gut may play a key role in multiple sclerosis (MS), scientists have discovered.

In mice, the bowel bug caused healthy animals to become ill with MS-like symptoms.  To read the full article click here.

Wednesday, 21 July 2010

NHS East Berkshire is to trial technology to allow patients to carry out rehabilitation exercises at home without needing to see a physiotherapist, as part of the launch of O2 Health.

From the MS Trust:

The technology will allow patients to return home and carry out pre-determined rehabilitation programmes shown on a TV screen and have their progress monitored remotely via movement sensors.
Data will be captured and communicated back to a physiotherapist for ongoing evaluation to make sure the patient is carrying out the correct movements.

Stem cell trials raise multiple sclerosis hopes

Source - Telegraph:

Tens of thousands of patients with MS could benefit from the revolutionary treatment if the tests taking place at the Frenchay hospital, near Bristol, are successful.  For full article click here.

BBC News - MS woman from Bradford backs suicide case man

From the BBC website:

A right-to-die campaigner has vowed to help a man who is asking for clarity on the law on so-called mercy killing.

To read full article click here:

Measuring the NHS against user expectations

The Department of Health launched a consultation called Transparency in Outcomes - a framework for the NHS on 19 July. Amongst the five areas on which it will focus will be enhancing the quality of life for people with long-term conditions.

To read full article click here.

Tuesday, 20 July 2010

Facebook

Don't forget BMSTC is now on Facebook!  There are lots of networks and news to share on Facebook, if you go to our page and click "like" at the top of the page and you will join your newsfeed!

Visit our  Facebook page here.

BBC Radio WM broadcast covering Helen Ley Centre

Just to let you know there will be a programme on BBC Radio WM this Wednesday from 9.30 covering the fate of Helen Ley. Simon Gillespie will be there, plus several carers, people with MS and ex-staff members. There may be a phone in too….. If you have time, please have a listen and if you feel so inclined please tell them your views.

To visit website click here.

Liberating the NHS: Improving outcomes for patients

Detailed proposals for how the NHS will improve healthcare outcomes for patients and judge its success were set out in a public consultation by the Department of Health today.

To read full article click here.

Scots duo invent "robot"legs!

Source: Daily and Sunday Express.

TWO Scottish expatriates have unveiled the world’s first robotic legs for wheelchair users after coming up with the design when one of them was diagnosed with multiple sclerosis.

To read full article click here.

Graeme is climbing Mount Kilamanjaro for BMSTC!

Graeme Rowe (friend of Trev and Liz Hudson) is climbing Mount Kilimanjaro for the Berkshire MS Therapy Centre!

If you would like to sponsor Graeme please visit his Just Giving Page

Blow for MS sufferers as plan for centre fails

Plans for a multiple sclerosis centre in Bradley Stoke [Bristol] have stalled after planners turned down an application for access to the site.
The £1.15 million building has already been approved but when the team behind the project prepared to start work, they found that it would be too expensive to use the proposed access off Bradley Stoke Way due to the need to reroute cables, and Wheatfield Drive was suggested as an alternative.  Read full article here.

Thursday, 15 July 2010

MS Society talks NHS reform with new Health Secretary

From the MS Society website:

The MS Society's Chief Executive, Simon Gillespie, met with Andrew Lansley, The Secretary of State for Health, earlier this week to discuss planned changes to the way the NHS is run.

To read more click here.

Millions of books get digitized for the disabled

From the MS Trust:

For those who are blind, dyslexic or have diseases like multiple sclerosis and have difficulty turning book pages, reading the latest best seller just got easier.
Brewster Kahle, a digital librarian and founder of a virtual library called the Internet Archive, has launched a worldwide campaign to double the number of books available for print-disabled people.  To read full article click here.

A new era of Multiple Sclerosis therapies begins

From the MSRC website:

New and improved multiple sclerosis (MS) drugs satisfying key unmet needs of oral administration and increased efficacy suggest a paradigm shift in MS therapy; ending the decade long dominance of interferon betas and Copaxone (glatiramer acetate, Teva) says independent analyst Datamonitor.

For more click here.

Wednesday, 14 July 2010

What do the changes to the NHS mean for people with MS ?

From the MS Trust website:

On 12 July the coalition government launched its white paper Equity and excellence: Liberating the NHS to change the NHS in England.



The key principles are:
■The original values of the NHS remain: it will offer a comprehensive service, available to all, free at the point of use and based on clinical need, not the ability to pay.


■The government will increase health spending in real terms in each year of the current parliament.


■The government goal is an NHS which achieves results that are amongst the best in the world.
 
For more click here.

Government to ‘liberate the NHS’

From the MS Society website:

The Secretary of State for Health Andrew Lansley has set out the Government’s ambitious plans to reform the NHS.



The plans, documented in a new White Paper titled 'Equity and Excellence: Liberating the NHS’, state that more power will be given to patients and professionals. To read full article click here.

Tuesday, 13 July 2010

Users guide to falling over!

From the BBC website:

Disabled from an early age (birth), Kate Ansell has had plenty of practice in falling over. In this article, she explores the psychology of landing-on-your-arse, factoring in the unique notions of disability and fragility as projected onto you by onlookers, and also the particular surrounds you happen to find yourself in at the time. This is science! So sit up and read.
To read article click here

Help to save the Helen Ley MS Respite Centre

Following a survey the MS Society announced on 10th June that all four of its respite care centres, including Helen Ley, will be closed or "transferred" to another provider.

A group has been set up to try to save Helen Ley MS Respite Care Centre.  For details click here.

Folding commode on offer!

One of our clients has a small commode which folds up for easy storage or transport. Ideal for taking on holidays. He is happy to give it to anyone who wants it. Please contact me on 0118 901 6000 or email pippa@bmstc.org  if you are interested.

Could anti-hypertension drugs help treat Multiple Sclerosis?

From the MSRC:

Angiotensin II sustains brain inflammation in mice via TGF-β
The renin-angiotensin-aldosterone system (RAAS) is a key hormonal system regulating blood pressure. However, expression of RAAS components has recently been detected in immune cells, and the RAAS has been implicated in several mouse models of autoimmune disease.  For more click here.

House of Lords to debate management of long-term neurological conditions

From the MS Trust website:
The MS Trust and the Therapists in MS group have played an active role in getting a question tabled for debate in the House of Lords. Baroness Gardner of Parkes has tabled a question asking the Government about their assessment of the role of allied health professionals in maintaining the health and social well-being of people with long-term neurological conditions.   For more click here.

New plans have been set out today by the government to enable local GPs to commission services on behalf of their patients.

From the MS Society website:
New plans have been set out today by the government to enable local GPs to commission services on behalf of their patients.
Less power will be given to Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs) who currently decide how money should be spent on health care.   For more click here.

Is hypovitaminosis D one of the environmental risk factors for multiple sclerosis?

From the MSRC:
The role of hypovitaminosis D as a possible risk factor for multiple sclerosis is reviewed.
First, it is emphasized that hypovitaminosis D could be only one of the risk factors for multiple sclerosis and that numerous other environmental and genetic risk factors appear to interact and combine to trigger the disease.  For more click here.

Monday, 12 July 2010

Can a controversial new treatment for multiple sclerosis offer relief?

Interesting article in the Telegraph by Liz Hunt published on the 12th July.

Mark Walker is what the NHS calls an “expert patient”. He’s someone who knows all there is to know about the disease that has shadowed his existence on and off, for nearly 20 years, forcing him to give up the high-flying job he adored, and curtailing an active life. Walker asks difficult questions of doctors, expects candid answers, and pursues new research doggedly.

For more click here.

Campaign to save MS Respite Centres

MS RESPITE CENTRES NEED YOUR HELP!!



The MS Society have announced, following their respite care review that they no longer intend to directly run the 4 MS Respite Centres accross the UK. They have announced that they will try and transfer care to another provider, though this will not be MS Specific, or failing this will close the centres, with Leuchie due to close this year, and the other 3 centres set to close sometime next year.  For more click here.

Please support the MS Society campaign to save MS Specialist Nurses

The MS Society is gathering support for a campaign to protect the roles of specialist MS nurses, which are currently under threat.



We've learnt that a number of nurse posts across the UK are under review and at risk of being cut. In some cases, posts are being frozen (where nurses have left and the post hasn't been recruited to) or cut altogether.   For more click here.

Tips on staying cool in a heatwave

From the BBC website:
The first weather health alert of the summer has been issued as temperatures are set to soar in parts of the UK.
Peaks of 31C (87.8F) across East Anglia and south-east England are expected on Friday and Saturday.
Dr Carol Cooper spoke to BBC Breakfast to offer some tips on staying cool in the heatwave.   For more click here.

USF receives patent for technology to improve treatment for neurodegenerative diseases

From the MS Trust website:
Umbilical cord blood cells and mannitol pass the blood-brain barrier.
The University of South Florida's Department of Neurosurgery and Brain Repair has been granted a patent for a cell transplantation procedure combining human umbilical cord blood (HUCB) cells and a sugar-alcohol compound called "mannitol" that may make a big difference in treating life-threatening neurodegenerative diseases such as Alzheimer's disease, Parkinson's disease, multiple sclerosis and stroke, among others.  Read full article here.

Thursday, 8 July 2010

New! Reading Community Radio!

A new web based local community radio station has been launched "Reading4U" supporting the local community and voluntary sector.

http://www.reading4u.org/

Wednesday, 7 July 2010

From the MS Trust site:

The UK MS Society has worked with other organisations to create Worklife, a website for people with long-term health conditions who want to stay in work, for their employers and for health professionals. 

http://www.yourworkhealth.com/

MSHealthCoach

This site was recommended recently by one of our new members:

http://mshealthcoach.com/

Nicky Campbell writes a tribute about Allan Rob Former BBC 5 live presenter

From the BBC website:
The former 5 live presenter Allan Robb has died at the age of 49.
I met Allan when we were 5 years old. We went to the same schools, and then we went to university together, where we shared rooms and then flats. We were both at Northsound Radio in Aberdeen together, then later at Radio 1, then at 5 live.  For full article click here.

Interim results of ofatumumab phase II study in multiple sclerosis

From the MS Trust website:
06 July 2010 - Market Watch
Genmab announces interim results from a Phase II study of ofatumumab in RRMS
Genmab A/S announced today positive interim results from an ofatumumab Phase II safety and pharmacokinetics study in patients with relapsing-remitting multiple sclerosis (RRMS).
For full article click here.

Tens of thousands of NHS jobs to be cut reports the Telegraph

Source The Telegraph 7th July 2010

The College has evidence of 10,000 posts which have been lost or are due to be cut following to recruitment freezes, not replacing retirees and redundancies.
However, it is feared that the true scale is even larger as the figures are from just 100 of the 400 NHS trusts in England.   For more click here

MS Trust update on availability Sativex

From the MS Trust website:
Following some calls to our information team the MS Trust would like to clarify the prescribing situation for people who would potentially benefit from Sativex.
The cannabis-based mouth spray recently received its UK licence for treatment of MS spasticity in people who have shown inadequate response to other drug treatments or otherwise found their side effects unbearable.  Read more here.

Tuesday, 6 July 2010

Short term wheelchair accessible vehicle hire from Gowrings

Strawberry picking, the great outdoors, the smell of candyfloss and sea air ... here at Gowrings Mobility we know what summer memories are made of which is why we are now offering some of our most popular models to rent by the week.From as little as £340 + VAT  a week you can enjoy the freedom and benefit of renting a wheelchair accessible vehicle directly from us.  From more info click here.

Abicare home care

Abicare Homecare, with a breadth of experience over many decades can offer you, your relative or friend the extra support you need to retain your independence, respect, and dignity within your own home.  For more information click here.

Campaign underway to save MS Society respite centres

Petition calls for reversal of decision to close four care homes - sign here
Campaigners have started a petition calling on the MS Society to reverse its decision to stop providing respite care, which has put 380 staff at risk of redundancy.
The society’s board decided earlier this month to stop funding its four respite care centres, which provide short-term care for people with multiple sclerosis. They will all close by the end of 2011 unless they are taken over by alternative providers.
Campaigners who want the centres to stay open have set up a website that asks people to sign a petition calling on the charity to reverse its decision.
A total of about 1,300 people have joined four groups on social networking website Facebook asking the charity to save the centres.
Naomi Rainbow, campaign coordinator, whose mother uses one of the threatened centres, said: "The MS Society says it will offer alternatives such as holiday-style accommodation, but without care.
"This would be highly unsuitable for all guests who have needs high enough to be accommodated at the centres. They will therefore be left with nowhere to go, which will put an immense strain on them and their families."
A spokeswoman for the MS Society said the charity would not be reversing its decision.
"Of course we have sympathy with people who are feeling upset, but whatever the outcome is, if we sell on to another care provider we will fully support people and make sure they get the care provision they need," she said.
Source: Third Sector © Third Sector 2010 (25/06/10)

Friday, 2 July 2010

BBC South Today coverage of Sativex

BBC South Today about Sativex, a new cannabis base drug, and why the PCT's in the South refuse to give it to MS patients.  Click here

Cautious welcome for personal health budgets

From the MS Trust website:
The MS Trust cautiously welcomes the personal health budget scheme announced earlier this week.
The scheme is being piloted in eight areas until 2012. Each area will look at specific areas of health care and two - Central London and Somerset - will include long-term neurological conditions. A similar direct payments scheme has been operating in social care provision for several years.  To read full article click here.

Clarification re media comment on Sativex

Published on the MS Trust website 02 July 2010 - GW Pharma
In response to a story in a regional UK media outlet yesterday, GW wishes to make the following clarification:
The story covered a decision by certain Primary Care Trusts (PCT) in a region of the UK that they were not paying for Sativex prescriptions. GW wishes to clarify that this decision was made last year, prior to the approval of Sativex when Sativex was only available on a "named patient" basis. At that time, Sativex was not approved in the UK.  For more click here

New website launched to assess stem cell clinics

Source: MS Society website:

The International Society for Stem Cell Research has launched a new website for patients considering undergoing controversial stem cell treatments. For more click here.

BBC Radio Berkshire Coverage of Sativex

Andrew Peach show broadcast on Thursday 1st July 2010 discussing Sativex, Cannibis based mouth spray.

http://www.bbc.co.uk/iplayer/episode/p008j87d/Andrew_Peach_01_07_2010/

Thursday, 1 July 2010

MS Society Event: Awareness online: Work and MS - Staying in work

Source MS Society website:

Date: 5 July 2010 to 18 July 2010



Location: www.mssociety.org.uk/awarenesstalks
From Monday 5 July 2010, you can watch a video (and/or read the transcript) of an interview with Jo Sweetland, Bsc hons Occupational Therapist, research occupational therapist at the Institute of Neurology, UCL linked to the National Hospital for Neurology and Neurosurgery, Queen Square, London and Marlo Donato Parmelee on staying in work and living with MS.  For more information click here