Campaign bites

...from the sharp end of the fight to improve services across the UK

Welcome to Campaign bites - brand new regular updates from the Campaigns Team giving you the inside track on national and regional campaign developments hot off the press!

23 December 2009
Breakthrough in Oxford - the Muscular Dystrophy Campaign is very pleased that the NHS South Central region is now working closely with us to address weaknesses in services and support. In particular, we are delighted with a new partnership approach to funding the vital Care Advisor post at the Oxford Muscle and Nerve Centre from 1 April 2010. This is the only post of its kind supporting more than 4,000 patients in the region and it is now secure until 30 June 2010 when it is intended that a permanent solution will have been put in place.

------------------------------------------------------------------------------------------------------------------------------------

Campaigners are calling on Health Minister Baroness Thornton to act on a recent pledge made in a House of Lords debate, when she stated that a national named lead for muscular dystrophy would ‘probably' be appointed. Read more...

22 December 2009
Trailblazers met with Transport for London yesterday to discuss wheelchair access to taxis in London and ways to guarantee that all taxis are fully accessible for all wheelchairs.

21 December 2009
The APPG for Muscular Dystrophy can confirm that Sue Cornick, Director of Specialised Commissioning at the North East Specialised Commissioning Group, will be attending the
APPG's NHS Specialised Commissioning session in the Houses of Parliament on Tuesday 19 January.

18 December 2009
Families and patients in South Central are joining forces to call on the NHS to Save the Care Advisor in Oxford. Funding for this essential post, the only one for the whole region, is due to finish at the end of March 2010.

Add your voice to the campaign by adding your name to our online petition and share your thoughts on why the Care Advisor post is important to you and your family.

17 December 2009
The next evidence session of the Welsh Assembly's Cross Party Group on Muscular Dystrophy Review is now arranged for 27 January from 6pm - 7.30pm in Conference Room 24 at the National Assembly for Wales. Patients, families and carers will be setting out their experiences and views on the strengths and weaknesses of current services.
Find out about the session and how to get involved

16 December 2009
Dave Anderson MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy, and a few Trailblazers came into Muscular Dystrophy Campaign HQ this morning to report about yesterday's Trailblazers event in Parliament and the continuing fight to improve access to services.

15 December 2009
Trailblazers are heading to Downing Street today to hand in a petition to the Prime Minister. The petition demands that the Government acts now to enable young disabled people to enjoy the same opportunities in society as their non disabled peers.

A Trailblazers event in Parliament this afternoon, hosted by Dave Anderson MP, marks the successful completion of the Trailblazers young campaigners' first three investigations into public transport, higher education and leisure facilities. Find out more about the day's events

------------------------------------------------------------------------------------------------------------------------------------

The next meeting of the West Midlands Muscle Group has just been confirmed for Thursday 21 January, 6.30pm - 9pm, at the Highcroft Sports and Social Club, Slade Road, Erdington, Birmingham B23 6AX.

14 December 2009

Specialist Neuromuscular Physiotherapist Jane Freebody joined families for a round-table discussion about local muscular dystrophy services at the latest meeting of the South Central Muscle Group in Oxford last Friday. The Muscle Group will be meeting next in Southampton on the 15 January. Find out more....

11 December 2009

The APPG for Muscular Dystrophy has received notification that Stephanie Newman and Dr Brijender Rana from the South East Coast Specialised Commissioning Group will be attending the APPG's NHS Specialised Commissioning session in the Houses of Parliament on Tuesday 19 January.

------------------------------------------------------------------------------------------------------------------------------------

Families living with muscle disease joined forces at an emergency meeting in Oxford on Friday, to call on the NHS to save their vital neuromuscular care advisor service - which is due to end at the end of March when funding will run out. To get involved with the campaign to save the care advisor service, please contact the Campaigns Team on 020 7803 2865 or campaigns@muscular-dystrophy.org

------------------------------------------------------------------------------------------------------------------------------------

Trailblazers have presented their findings on disabled access to transport to the Disabled Persons Transport Advisory Committee (DPTAC) at the request of Transport Minister Sadiq Khan MP.

10 December 2009
The Trailblazers' campaigns are being publicised by Trailblazer Tanvi Vyas and Bobby at meetings with Passenger Focus and Motability meetings today.

------------------------------------------------------------------------------------------------------------------------------------

Dave Anderson, MP for Blaydon in the North East, and Lynne Featherstone, MP for Hornsey and Wood Green in London, have tabled written Parliamentary Questions for the North East and London regions respectively asking about steps to ensure access to NHS-funded Muscular Dystrophy Care Advisors and about what discussions have taken place to undertake a review of neuromuscular services in the North East and London regions.

9 December 2009
Trailblazers are calling on you to add your name to their petition and tell Prime Minister what you think about services for disabled people, ahead of their Parliamentary Reception next week. The deadline for signatures is Monday 14 December.

8 December 2009

Fight to save our Care Advisor in Oxford. Join us at a crucial meeting of the South Central Muscle Group in Oxford this Friday 11 December at 10am with local MP, Dr Evan Harris, attending.

7 December 2009

Greg Mulholland, MP for Leeds North West, addressed patients and families at the latest Yorkshire and Humber Muscle Group meeting on Friday 4 December, throwing his weight behind the campaign to strengthen services for people living with muscle disease in the region.

------------------------------------------------------------------------------------------------------------------------------------

Andrew Bibby, Associate Director of Commissioning at the South East Coast Specialised Commissioning Group (SCG), will be meeting with representatives from the Muscular Dystrophy Campaign on Friday 11 December to discuss the actions that the SCG will be taking to improve neuromuscular services in the region. Andrew Bibby has also agreed to attend the South East Coast Muscle Group's next meeting on 27 January 2010.

4 December 2009

The Muscular Dystrophy Campaign has called on the NHS to take urgent action to implement new care standards for all patients with Duchenne muscular dystrophy across England. The Duchenne care guidelines, published online today, set out clearly the medical care that every child and adult affected by this devastating condition should receive for the best possible quality and length of life. All NHS specialised commissioning groups should follow the need of the South West and West Midlands in reviewing their neuromuscular services without delay.

------------------------------------------------------------------------------------------------------------------------------------

The APPG for Muscular Dystrophy has received notification that Jon Develing from the North West Specialised Commissioning Group will be attending the APPG's NHS Specialised Commissioning session in the Houses of Parliament on Tuesday 19 January. Read more about the meeting

3 December 2009

Carmel Hanna MLA will be attending the Northern Ireland Council meeting on 13 February 2010 as the fight continues to improve access to specialist neuromuscular care in Northern Ireland.

------------------------------------------------------------------------------------------------------------------------------------

Trailblazers have launched Calling Time, their report into accessibility in leisure facilities. Pubs, clubs, cinemas, sports stadiums and restaurants have been put to test on access and Trailblazer Tanvi Vyas featured on GMTV today. Further coverage is expected today on Channel Five.

------------------------------------------------------------------------------------------------------------------------------------

In the last Parliamentary year, over a hundred MPs added their names to the Muscular Dystrophy Campaign's work in the House of Commons to highlight unacceptable variations in the provision of specialist services for people with muscle disease. Get in touch with the Campaigns Team to find out if your own Member of Parliament was one of them or to find out how to make sure your local politicians are supporting you in the fight for better care.

------------------------------------------------------------------------------------------------------------------------------------

Today is the United Nations International Day of Persons with Disabilities. Trailblazers and the regional campaigning Muscle Groups embody the fight for rights and independence.

2 December 2009

Following the announcement of Carwyn Jones AM as new Welsh Assembly Labour leader and First Minister-elect, the Muscular Dystrophy Campaign looks forward to continuing to work with the Health Minister and Welsh Assembly Government to address urgently the key issues regarding access to specialist neuromuscular care in Wales.
Read about the first Cross Party Group Review evidence session

------------------------------------------------------------------------------------------------------------------------------------

Northern Ireland campaigning update to be presented at the Northern Ireland Council meeting scheduled for February 2010.

1 December 2009
Launch of Scottish Parliament Cross Party Group on Muscular Dystrophy taking place on Wednesday 6 January 2010 - find out more...

------------------------------------------------------------------------------------------------------------------------------------

Trailblazers, runners-up at yesterday evening's RADAR People of the Year 2009 awards, was singled out for praise by the judges for recent high profile campaigns and the effectiveness in persuading Government Ministers to listen to the key issues that the young campaigners have highlighted.

30 November 2009
Trailblazers has been nominated at Disability Network RADAR's People of the Year 2009 awards, which are taking place at the Battersea Evolution venue tonight.

27 November 2009
The APPG for Muscular Dystrophy has received notification that Kate Caston and Christine Richardson from the East Midlands Specialised Commissioning Group will be attending the APPG's NHS Specialised Commissioning session in the Houses of Parliament on Tuesday 19 January.

------------------------------------------------------------------------------------------------------------------------------------

Simon Jupp, Director of Commissioning at the South Central Specialised Commissioning Group (SCG), pledged yesterday to work with the Muscular Dystrophy Campaign to bring forward a comprehensive plan for improving neuromuscular services in the region. He has also agreed to speak directly to families at the Southampton meeting of the South Central Muscle Group on Friday 15 January - read more about this meeting

26 November 2009
An Early Day Motion in support of the East Midlands Muscle Group has been tabled by Bob Laxton, MP for Derby North, and has been backed by MPs from across the region.

------------------------------------------------------------------------------------------------------------------------------------

Trailblazer Jagdeep Kaur Sembi is travelling to London to the v Awards at the O2 Arena tonight to collect her campaigning award for her work with Trailblazers in the West Midlands.

------------------------------------------------------------------------------------------------------------------------------------

Next South East Coast Muscle Group meeting booked for 2pm - 4pm on Wednesday 27 January at the Three Bridges Community Centre, Gales Place, Three Bridges (near Crawley), RH10 1QG. Find out more...

25 November 2009
Dr Hammans, adult neuromuscular specialist in Southampton, has been working with the team to highlight strengths and gaps in services and priorities for urgent action ahead of tomorrow's meeting with the Director of the South Central Specialised Commissioning Group. Stay tuned for a further update following the meeting.

------------------------------------------------------------------------------------------------------------------------------------

It has been officially confirmed that the sleep study service in Cardiff, which had been withdrawn, has now been temporarily reinstated until March 2010 with a proposed continuation and development of the service beyond March 2010. More details...

24 November 2009
Andrew Galvin, a journalism student at Bournemouth University who has Becker muscular dystrophy, included the charity's campaigning activity in interviews conducted at the Muscular Dystrophy Campaign's Head Office yesterday as part of a tv documentary about muscular dystrophy. We wish Andrew all the best with his project.

------------------------------------------------------------------------------------------------------------------------------------

We are delighted to announce the excellent news that Sue Manning's Regional Care Advisor post in Leeds will be fully funded by and embedded in the NHS from April 2010. The securing of this post is a welcome development in the battle to improve services in the Yorkshire and Humber region.

23 November 2009
Simon Jupp, Director of Commissioning at the South Central Specialised Commissioning Group (SCG), has agreed to an urgent meeting with representatives from the Muscular Dystrophy Campaign on Thursday to discuss the actions that the SCG will be taking to address the failings in neuromuscular services in the region.

------------------------------------------------------------------------------------------------------------------------------------

North East Muscle Group update - Muscular Dystrophy Campaign Honorary Life President, Lord Walton of Detchant, and All Party Parliamentary Group for Muscular Dystrophy Chair, Dave Anderson MP, will be attending the next North East Muscle Group meeting in Gateshead on Friday 27 November to support the North East Muscle Group's fight for improved and secure services in the region.

20 November 2009

Bobby and Trailblazer Tanvi Vyas and are going undercover with Transport Minister Sadiq Khan MP to test disabled access on buses in Nottingham today. Find out about the trip on theTrailblazers website shortly

------------------------------------------------------------------------------------------------------------------------------------

Nic and Natasha are in Nottingham today for the East Midlands Muscle Group meeting ... outcomes from the meeting to follow

19 November 2009

Southampton meeting of the South Central Muscle Group now booked for Friday 15 January 2010 from 10.30am - 12pm. Local MP, Sandra Gidley, is attending. Read more

------------------------------------------------------------------------------------------------------------------------------------

The Welsh Assembly's Cross Party Group on Muscular Dystrophy Review was launched last night with Assembly Members, clinicians and families from across Wales in attendance. The Group's Chair, Dr Dai Lloyd AM, led discussions on the crucial issues of specialist neuromuscular care. Stay tuned for a report of the meeting and details of the next evidence session in mid January. Welsh Assembly Cross Party Group on Muscular Dystrophy Review - Written Evidence Form

18 November 2009

Bobby is issuing a final call for Trailblazers to fill in quick questionnaires as part of an investigation into accessibility to leisure facilities in the UK. The deadline is Friday 20 November. Find out about putting leisure facilities to the test

------------------------------------------------------------------------------------------------------------------------------------

Natasha is preparing for the East Midlands Muscle Group meeting on Friday 20 November, at which Derby North MP, Bob Laxton, will be attending.

------------------------------------------------------------------------------------------------------------------------------------

Nic and Jonathan are at the Welsh Assembly Cross Party Group on Muscular Dystrophy Review launch today. Clinicians from across Wales will be setting out what constitutes a specialist neuromuscular service in evidence submissions to Assembly Members.

17 November 2009

A seventeen year old young man with Duchenne muscular dystrophy will soon be enjoying the use of a Neater Eater after his family won a long-running battle with the local council to secure funding for this essential piece of equipment. After a nine month wait, the Muscular Dystrophy Campaign intervened, and secured the support of the local MP to back the family's case. The Neater Eater was delivered within just a few weeks of the council receiving the letter from the Policy and Campaigns Team.

The Policy and Campaigns Team offers free advocacy support and are here to help anyone affected by muscle disease who is experiencing difficulties.

16 November 2009

Local MP Jeremy Browne has confirmed his attendance at the next meeting of the South West Muscle Group in Taunton on Saturday 9 January ... more details about the event

------------------------------------------------------------------------------------------------------------------------------------

The Muscular Dystrophy Campaign has today strongly recommended that the government takes urgent action to reform the Local Housing Allowance to enable people to continue to lead independent lives with live-in support, if necessary. We highlight in evidence to an inquiry by the House of Commons Work and Pensions Select Committee that unlike under Housing Benefit, there is no discretion under the LHA for people who need extra housing space because of a disability.

Local Housing Allowance has replaced Housing Benefit for new claimants living in privately rented accommodation. Find out more information and read the evidence

13 November 2009

Bobby has been publicizing the Trailblazers' latest investigation into the accessibility of leisure facilities in the UK. Support the campaign by filling in a quick questionnaire on your family's experiences in pubs, theatres, cinemas, football stadiums and other leisure venues.
Putting leisure facilities to the test

------------------------------------------------------------------------------------------------------------------------------------

The Muscular Dystrophy Campaign has formally responded to the Department of Health's Green Paper on Social Care. The response firmly sets out our opposition to the proposal to merge Attendance Allowance with local authority social care funds, and to any future proposal to merge Disability Living Allowance with the general social care budget. Thanks to everyone who got in touch to raise their concerns about the Green Paper. Find out more about the campaign to save Attendance Allowance and Disability Living Allowance

------------------------------------------------------------------------------------------------------------------------------------

Jonathan is making final preparations for the launch of the Welsh Assembly's Cross Party Group Review on Muscular Dystrophy on Wednesday 18 November. For more information about the review, please get in touch: 020 7803 4839 or campaigns@muscular-dystrophy.org
Review info and how to submit evidence

12 November 2009

Robert and Nic have had a productive and positive meeting today in Cambridge with the East of England Specialised Commissioning Group and clinicians. Keep an eye on this page for further East of England developments.

------------------------------------------------------------------------------------------------------------------------------------

Alexandra has been in Birmingham, putting the final touches to the West Midlands Neuromuscular Services Development Strategy which will be published shortly. Thanks to all the Muscle Group members for their fantastic input - but our work will continue - we now need to persuade the local Primary Care Trusts to agree the new investment ... For more info, get in touch: 0207 803 2865 or campaigns@muscular-dystrophy.org

------------------------------------------------------------------------------------------------------------------------------------

The Trailblazers' End of the Line report was cited in Parliament on Tuesday by John Randall, MP for Uxbridge, in a Westminster Hall debate on disabled access to public transport. In response, Transport Minister Sadiq Khan pointed out that he was aware of the Trailblazers' research.

Read a full transcript of the debate

Full report of the debate on the Trailblazers website

------------------------------------------------------------------------------------------------------------------------------------

South Central Muscle Group meeting in Oxford now booked for 11 December with Oxford West MP, Dr Evan Harris, attending

11 November 2009
Robert and Nic are meeting East of England clinicians this afternoon to discuss the development of neuromuscular services in the region. Find out more about the call for an essential review of services in the region

------------------------------------------------------------------------------------------------------------------------------------

The Muscular Dystrophy Campaign has set out the vital need for high quality specialist care for muscular dystrophies and related neuromuscular conditions in response to the Department of Health's National Quality Board consultation on Prioritisation.

10 November 2009
Health Minister Ann Keen MP has responded to Parliamentary Questions tabled by Roger Gale, MP for North Thanet, to confirm that the Department of Health will be working with the Muscular Dystrophy Campaign to resolve the current variations in the provision of specialist physiotherapy, care advisors and other specialised neuromuscular services. Read the Minister's answers in full.

9 November 2009
Has anybody had any positive or negative issues with the new Local Housing Allowance - particularly for independent living if you require a carer. We are responding to a Parliamentary Committee's investigation, so please get in touch with any comments on campaigns@muscular-dystrophy.org or 020 7803 2865.

------------------------------------------------------------------------------------------------------------------------------------

Yorkshire and Humber Muscle Group's Autumn meeting - Leeds venue now booked with local MP Greg Mulholland attending.

------------------------------------------------------------------------------------------------------------------------------------

Campaign bites launches! Stay tuned for breaking news...