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!
And if you use Twitter, you can follow CampaignsMD to stay informed on the latest Campaigns news.
12 October 2010
All new updates can now be found on the CampaignsMD Blog.
11 October 2010
Want to hear the latest research developments for neuromuscular services? Come along to the next meeting of the Thames Valley Muscle Group this Saturday in Reading for a talk from Dr Kristina Elvidge, Research Communications Officer at the Muscular Dystrophy Campaign
The meeting is Saturday 16 October 2010: 10.30am - 12.30pm, St Nicolas Church, Sutcliffe Avenue, Earley, Reading, RG6 7JN – more information here
8 October 2010
Anyone living in Hampshire is invited to come along to the South Central Hampshire Muscle Group meeting on Friday 15 October 10.30am - 12.30pm at the Holiday Inn Express, Southampton M27, JCT.7, Botley Road - West End, Southampton, SO30 3XA - find out more...
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The West Midlands Muscle Group had a very productive meeting last night in Birmingham - meeting action points to follow soon...
7 October 2010
The West Midlands Muscle Group is holding its latest meeting in Birmingham this evening. Discussions will include the next steps for campaigning for better services in the region, the investment of the West Midlands Neuromuscular Strategy and the West Midlands Kite Appeal for a Neuromuscular Centre.
6 October 2010
The Muscular Dystrophy Campaign has formally submitted their concerns regarding the proposed new GP Commissioning system to Parliament's Health Select Committee, which had requested evidence on the impact of the proposed move to GP Commissioning on patients with rare conditions who require specialised services, as part of an in-depth inquiry. Read the key points from the evidence submission and the full memorandum...
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The Muscular Dystrophy Campaign met with Tom Brake, MP for Carshalton and Wallington, this morning to discuss neuromuscular services in the London region.
5 October 2010
Come along to the next West Midlands Muscle Group meeting on Thursday 7 October from 7pm to 9pm at the Holiday Inn Express, Birmingham NEC, Bickenhill Parkway, Birmingham B40 1QA - find out more...
4 October 2010
A Muscular Dystrophy Campaign letter to the Guardian on potential research funding cuts that could jeopardise the longer-term development of life-saving treatments for the 70,000 children and adults with muscle disease has been published - read the letter in full...
1 October 2010
Today, the Equality Act comes into force, replacing nine separate pieces of legislation, including the Disability Discrimination Act (DDA). It is hoped that this new piece of legislation will bring clarity and coherence to discrimination law and give disabled people a stronger chance for equality in society. Read about the new legislation in more detail...
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The Muscular Dystrophy Campaign and Trailblazers Young Campaigners Network have submitted a joint response to the government's proposals on changing the disability benefits system, warning that the any changes must not only protect current levels of disability benefits, but go further to support people dealing with the higher costs of living with a disability. Read more...
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Robert Meadowcroft, Acting Chief Executive of the Muscular Dystrophy Campaign, has commented on the British Medical Association's response to the Government's Health White Paper, which sets out plans to give GPs more control of health budgets. Read the statement in full...
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The Derby Evening Telegraph has highlighted this week that investing in specialist services earlier on in the East Midlands region could save a significant proportion of the £6million that is being wasted on unplanned emergency admissions to hospital for muscle disease patients.
30 September 2010
Anyone living with muscle disease in Wales is invited to the Welsh Neuromuscular Conference taking place on Monday 25 October. As well as discussing the Thomas Report recommendations, there will be research, care and support and fundraising updates - find out more...
29 September 2010
Over 40 families and supporters were joined by MSPs at the launch of the Scottish Cross Party Group's Mackie Report yesterday evening. Jackie Baillie MSP, Chair of the Cross Party Group, her MSP colleagues and campaigners vowed to continue the fight to ensure that the recommendations in the report are implemented quickly. Find out more about the Cross Party Group's Inquiry...
Watch STV coverage of the launch (9m40s)
28 September 2010
The Cross Party Group in the Scottish Parliament on Muscular Dystrophy is publishing an investigation into specialist neuromuscular care and social care at the Scottish Parliament this evening.
The Mackie Report is the culmination of five months of work by MSPs from the Cross Party Group (CPG) on Muscular Dystrophy supported by people across Scotland living with muscle disease who shared their experiences with the CPG and the Muscular Dystrophy Campaign. Read more...
27 September 2010
Come along to the next South West Muscle Group meeting, which takes place on Saturday 2 October from 2pm to 4pm in North Petherton Community Centre, Fore Street, North Petherton (Near Taunton), TA6 6QA - find out more...
24 September 2010
Following newspaper reports about the future of a number of quangos, including the Independent Living Fund, Muscular Dystrophy Campaign Acting Chief Executive, Robert Meadowcroft has warned that axing disability organisations could make it harder for people with disabilities to live independently. Read the Muscular Dystrophy Campaign's statement and the list of quangos under review.
23 September 2010
Ray Thomas, who has been who has been tirelessly campaigning for improved neuromuscular services for more than 35 years in Wales, has been shortlisted in the Volunteer of the Year category at the Third Sector Awards this evening. We wish Ray the best of luck!
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Newspaper reports this morning have highlighted the cuts that threaten pioneering stem cell work. The Muscular Dystrophy Campaign has also expressed its concerns about the cuts - read more...
22 September 2010
Nic attended an East Midlands Specialised Commissioning Group meeting this afternoon to discuss the review into neuromuscular services that is currently being undertaken. Stay tuned for more news from the region...
21 September 2010
Alexandra attended a seminar this morning with Professor Malcolm Harrington, who is undertaking an independent review of the Work Capability Assessment for the Department of Work and Pensions, and pressed for the lack of accessible jobs for people with neuromuscular conditions to be taken into account when people are being placed on either Jobseeker's Allowance or the new Employment and Support Allowance.
Read the Muscular Dystrophy Campaign response to Professor Harrington's review or find out more information about the review.
Are you affected by muscular dystrophy or a neuromuscular condition, and applied for the Employment and Support Allowance? Let us know your story on 0207 803 2865 or by email at campaigns@muscular-dystrophy.org
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The next Yorkshire and Humber Muscle Group meeting has been booked for Friday 29 October 2010: 1pm - 3pm, Goodwin Development Trust, Goodwin Centre, Icehouse Road, Hull, HU3 2HQ. We will be joined by Diana Johnson, MP for Kingston upon Hull North, to discuss care services in the region. Find out more...
20 September 2010
North West Trailblazers are holding their second group meeting this evening in Manchester - find out more...
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Muscle Group members from across the country attended the Muscular Dystrophy Campaign's National Conference in Birmingham on Saturday and took part in campaigning workshops.
17 September 2010
The West Midlands Kite Appeal for a Neuromuscular Centre in Birmingham is being launched today, a fundraising drive to pay for the new centre, the first neuromuscular treatment centre in the West Midlands.
The facility will benefit people living with muscle disease in the West Midlands who often have to travel long distances for treatments like physiotherapy, or even go without them altogether.
Read more about the Kite Appeal...
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East Midlands Trailblazers held their latest meeting in Nottingham yesterday. Discussions included care packages and PA support for students on work placements. Find out more...
16 September 2010
Newspaper reports today have suggested that government ministers will be pushing forward radical reforms to welfare benefits and adopting a "universal benefit" such as the Single Working Age Benefit, which would be paid at the same level for jobseekers and those who are classed as unable to work due to a disability. Currently the most severely disabled person claiming Employment and Support Allowance may receive £91.40 per week, with the maximum a person may receive on Jobseekers Allowance only £65.45 per week. We would oppose such a system being adopted without this shortfall being met through alternative disability benefits or a disability premium being paid on the benefit.
Read more about the Muscular Dystrophy Campaign's views on proposed changes to the welfare system.
15 September 2010
The next South Central Muscle Group Milton Keynes and Buckinghamshire meeting has been booked for Friday 29 October 2010: 10am - 12pm, Express by Holiday Inn Milton Keynes, Tongwell Street, Fox Milne, Milton Keynes, MK15 0YA. There will also be a presentation by the Trailblazers young campaigners network. Find out more...
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Proposed cuts to government spending on clinical research could stop much of the vital work being done to find cures for these progressive and sometimes life-limiting neuromuscular conditions. Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, warns that these cuts "could not come at a worse time given the emerging developments of treatments for muscular dystrophies and related neuromuscular conditions for which there are no known cures at present." Read the Muscular Dystrophy Campaign statement in full...
14 September 2010
Nic was at an East of England Specialised Commissioning Group Neuromuscular Services Review meeting this morning, with progress made on proposals for 3 new Care Advisors in the region. Stay tuned for more news from the region...
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The Yorkshire and the Humber Trailblazers held their latest meeting in Leeds yesterday to discuss possible future campaigns.
13 September 2010
Barbara Keeley, MP for Worsley and Eccles South, has raised the Muscular Dystrophy Campaign's concerns in Parliament about many GPs' lack of knowledge of neuromuscular conditions in a debate about GP commissioning.
Ms Keeley said in the House of Commons that:
campaigning groups such as the Muscular Dystrophy Campaign feel that GPs have too little knowledge of muscle wasting conditions to commission services for their patients.
10 September 2010
Real progress was made at the East of England Muscle Group meeting this afternoon in Ipswich with 25 campaigners, Ben Gummer MP and East of England Specialised Commissioning Group. Stay tuned for more news from the region...
9 September 2010
At London's City Hall yesterday, London Assembly Members raised Trailblazers' concerns about accessibility at Stratford station. Read more...
8 September 2010
The NHS North West Specialised Commissioning Group is holding an event in Warrington today as part of its review into neuromuscular services in the region where people living with muscle disease have the opportunity get their voices heard and to let the NHS know what the review's outcomes should be. Stay tuned for more news from the region...
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Trailblazers regional ambassadors have been visiting the London Olympic Park in Stratford today. Sulaiman Khan, Dave Gale and Rikin Shah have all ahd the chance to find out what's been put in place for disabled spectators and paralympians.
7 September 2010
The Scottish Cross Party Group on Muscular Dystrophy Inquiry session this evening will focus on social care provision for people living with muscle disease in Scotland.
This is the final session before the launch of the Group's report into specialist neuromuscular care and social care at a Muscular Dystrophy Campaign reception on Tuesday 28 September.
To attend the report launch, please get in touch on 020 7803 4839 or by email at campaigns@muscular-dystrophy.org
6 September 2010
The South West Trailblazers held their latest meeting in Taunton on Saturday. They discussed possible regional campaigns including investigating accessibility to toilet facilities at music festival venues in the region.
3 September 2010
The Muscular Dystrophy Campaign has submitted evidence to the Work and Pensions Select Committee Inquiry into the impact of the changes to Housing Benefit announced in the June 2010 Budget - read the evidence submitted to the Inquiry.
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The South West Trailblazers will be discussing future local campaigns and reflecting on the progress of ongoing campaigning activity tomorrow at the Holiday Inn Express in Taunton - find out more.
2 September 2010
The Muscular Dystrophy Campaign has submitted evidence to the Independent Review of the Work Capability Assessment for the Employment and Support Allowance.
Read the Muscular Dystrophy Campaign response and find out more information about the review.
1 September 2010
Anyone affected by muscle disease in Scotland is invited to the Muscular Dystrophy Campaign's Scottish Parliament reception on Tuesday 28 September from 6pm to 8pm, with a photo call outside the Scottish Parliament from 5pm with MSPs. The Cross Party Group on Muscular Dystrophy, supported by the Muscular Dystrophy Campaign, will be launching its new report on neuromuscular services in Scotland.
To register your attendance or to find out more, please get in touch on 020 7803 4839 or by email to campaigns@muscular-dystrophy.org
31 August 2010
The West Midlands Trailblazers will be discussing the campaigning activity in the region tomorrow at the Centre for Voluntary Action in Birmingham tomorrow - find out more about the meeting.
27 August 2010
Are you affected by muscular dystrophy or a neuromuscular condition, and applied for the Employment and Support Allowance? Let us know your story on 0207 803 2865 or by email at campaigns@muscular-dystrophy.org
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The Muscular Dystrophy Campaign's patients' survey is featured in The Times today - for those of you who have a paper copy, it's on page 23. Read about the survey results and watch media coverage.
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Good luck to the South West campaigners on the 30 hour Weston Wheelathon today and tomorrow - find out more and show your support.
26 August 2010
The North West Specialised Commissioning Group held its latest neuromuscular services review meeting this morning - stay tuned for more news about the review's progress...
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The Niblett family's struggle to access essential services was highlighted in the main story on BBC South Today yesterday evening, with Dr Simon Hammans and Nic interviewed about the improvements needed to specialist service provision in the South Central region, such as the Care Advisor posts promised in Parliament by the South Central Specialised Commissioning Group.
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As well as watching the full Muscular Dystrophy Campaign feature and debate on BBC iPlayer, you can watch Jane Field's interview and the Newsnight report on the Newsnight website.
Jane has also spoken about the battle for the specialist care for her son, Murray, on ITV Central West and in an in-depth interview on BBC Hereford and Worcester Radio (1hr01m50s).
25 August 2010
The West Midlands Neuromuscular Steering Group held its latest meeting this afternoon to discuss implementation of the investment in West Midlands neuromuscular services announced in March - find out more details about the investment...
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The Trailblazers are pleased to note that, since the publication of their All Inclusive? report on tourism, EasyJet has changed its policy on their website regarding wheelchairs and mobility aids over 60kg. Read more and find out what further action Trailblazers are calling on all airlines to take.
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If you missed the Muscular Dystrophy Campaign headline item about our patients' survey and interview with West Midlands Muscle Group co-chair, Jane Field, on Newsnight yesterday evening, you can watch it on BBC iPlayer.
24 August 2010
Muscular Dystrophy Campaign's patients' survey will be the main feature on Newsnight tonight at 10.30pm tonight on BBC2 - find out more...
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South West campaigner, Steve Ledbrook, has been interviewed by BBC Bristol about his and other South West campaigners' forthcoming Muscular Dystrophy Campaign fundraising efforts on the Weston Wheel on Friday - read the article on the BBC website and show your support for them online.
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Nic was interviewed on BBC North West Tonight yesterday evening as difficulties in accessing public transport were featured.
23 August 2010
Trailblazer Sulaiman Khan was featured on BBC London News at lunchtime today as he expressed serious concerns about the accessibility of London for disabled travellers - watch the video on the BBC website and read the reporter's blog about the story
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The Trailblazers' new report, All Inclusive?, investigating the needs of disabled travellers, has hit the headlines today.
Trailblazers have revealed the shocking ignorance and poor service of many high street travel agents, hoteliers and airlines about the needs of disabled travellers.
Over 200 young disabled people were surveyed and the Trailblazers' All Inclusive? report highlights many barriers to accessing holidays in the UK and abroad.
Read more about the investigation and the press coverage in the Guardian.
20 August 2010
The Policy and Campaigns team and Trailblazers are looking forward to hopefully seeing some news coverage of their campaigns this weekend - keep your eyes peeled for coverage!
19 August 2010
The Policy and Campaigns Team are speaking today to commissioners from the South Central region, and look forward to an update on the progress of their work to improve neuromuscular services for people in Oxfordshire, Buckinghamshire, Berkshire Hampshire and the Isle of Wight
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Nic is taking a trip to Banstead today to celebrate the 25th anniversary of the Banstead branch of the Muscular Dystrophy Campaign and congratulate the members on their incredible fundraising achievements over the last quarter-century. Thanks to their continued hard work, our campaigning, vital research and care and support work can continue.
18 August 2010
Just 9 days to go until South West Muscle Group members Steve Ledbrook, Khurm Arshad, Lynette McMillan, Don Griffin and Trailblazer Kim Randle spend an incredible 30 hours on the Weston Wheel to raise money for the MDC - show your support for them online here.
17 August 2010
The Trailblazers, together with project manager Bobby Ancil, were interviewed today by BBC London about the 2012 Olympics and Paralympics. Accessible transport needs to improve if the Games are going to be fully inclusive.
16 August 2010
The Muscular Dystrophy Campaign joined forces with patients in the South West on Monday, at a meeting with the South West NHS Specialised Commissioning Group. We called on the SCG to make sure that the additional investment in neuromuscular services reaches local patients and their families as soon as possible.
13 August 2010
The Campaigns team offer free advocacy support for anyone affected by muscle disease who is experiencing difficulties with social care, education, access to specialist health care services and employment rights issues - we're here to fight for your rights - phone us on 020 7803 4847 or email campaigns@muscular-dystrophy.org
12 August 2010
Trailblazers from across the South East met in Guildford today discuss campaigns on accessibility in their local area. The meeting was joined by Jon Hastie from the Federation of Disabled People, and Steve Ledbrook, Trailblazers Regional Ambassador for the South West who shared his experiences as a long term disability rights campaigner.
11 August 2010
Trailblazers is supporting a young man in Leeds who wants to see better services for wheelchair users at his local cinema.
10 August 2010
The Campaigns Team have highlighted the importance of disability benefits – read more
9 August 2010
The Scottish Muscle Group held their second meeting at the Beardmore Hotel in Glasgow on Saturday. The group were joined by parliamentarians Gemma Doyle MP and Des McNulty MSP.
The Scottish Trailblazers also met at the Beardmore and developed plans for their forthcoming Scottish national report.
6 August 2010
A Welsh translation of the Cross Party Group on Muscular Dystrophy's Thomas Report into Access to Specialist Neuromuscular Care in Wales has now been produced and is available online here.
Read about the Thomas Report launch in the Welsh Assembly and watch media coverage of the event.
5 August 2010
The Muscular Dystrophy Campaign had a positive discussion this morning with Teresa Moss, Director of National Specialised Commissioning, about specialised commissioning for neuromuscular services across the country.
Find out about the latest news and events in your area.
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The Muscular Dystrophy Campaign has raised concerns over remarks by the Prime Minister on fixed terms for social housing tenancies.
The Muscular Dystrophy Campaign warns that proposals to introduce fixed terms for social housing tenancies may force some people with severe disabilities out of homes that have been adapted for them into inaccessible privately rented accommodation. Read more...
The Policy and Campaigns Team will be responding formally to the upcoming consultation paper - get in touch to have your say on 0207 803 2865 or by email at campaigns@muscular-dystrophy.org
4 August 2010
The next East of England Muscle Group meeting has been booked for Friday 10 September 2010: 1pm - 3pm, Pinewood Community Hall, Laburnum Close, Pinewood, Ipswich, IP8 3SL. Ipswich MP, Ben Gummer, will be attending to discuss care services in the region - find out more...
3 August 2010
The next Scotland Muscle Group and Scotland Trailblazers group meetings take place this Saturday 7 August from 12pm to 3pm at the Beardmore Hotel in Clydebank - find out more about attending the Scotland Muscle Group meeting and the Scotland Trailblazers meeting.
2 August 2010
The next meeting of the South West Muscle Group has just been booked for Saturday 2 October: 2pm - 4pm, North Petherton Community Centre, Fore Street, North Petherton (Near Taunton), TA6 6QA - read more...
30 July 2010
The Muscular Dystrophy Campaign welcomes the intention in today's 21st Century Welfare consultation paper to simplify the complex benefits system, and to make the process more efficient. We are, however, deeply concerned that the consultation paper is limited in terms of detail for what this will mean for people living with a disability who are unable to work, and where there is greater detail offered, it gives rise to considerable alarm.
The Policy and Campaigns team are now compiling our formal response to the consultation paper - get in touch to have your say at campaigns@muscular-dystrophy.org or 020 7803 2865.
Read the Muscular Dystrophy Campaign's initial response to the paper...
29 July 2010
Please note that we have had to cancel the Yorkshire and Humber Muscle Group meeting in Hull scheduled for Friday 27 August. Details of the rescheduled meeting will be publicised soon on Campaign bites and on Campaign events.
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Sussex Partnership NHS Foundation Trust has introduced an online service to help visitors, service users their carers and staff check the disabled access of its buildings and the best access routes before they visit.
Visitors who have a mobility or sensory impairment can now visit the Trust website and can easily identify the accessibility of any Trust facility. The Trust will ensure that staff are aware of this service so they can supply the information to those who do not use or have access to the internet but would still benefit from the information.
Find out more about the South East Coast Muscle Group
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Today Trailblazers launch their Right to Work report into employment. Right to Work is an investigation into employment and job seeking for disabled people, carried out by Trailblazers. Over the past four months we have surveyed over 100 Trailblazers, carrying out undercover investigations of Jobcentre Plus and recruitment agencies across the UK.
28 July 2010
The next meeting of the West Midlands Muscle Group has just been booked for Thursday 7 October 7-9pm at the Holiday Inn Express, Birmingham NEC, Bickenhill Parkway, Birmingham B40 1QA - find out more here
27 July 2010
The Trailblazers London group will be meeting this evening to discuss campaigning activity in the region and their plans for making London a more accessible city.
Trailblazers have a busy day ahead, having sent a reminder to TFL and the Mayor that with just two years to go until the start of the London Olympics, we are still a long way from having a fully accessible transport system in the capital.
26 July 2010
The Muscular Dystrophy Campaign and Trailblazers met with Paul Maynard, MP for Blackpool North and Cleveleys and vice-chair of the All Party Parliamentary Group (APPG) for Muscular Dystrophy, this afternoon to discuss neuromuscular services in the North West region and how the opinions of young disabled people can be heard in Parliament.
Find out more about the first APPG meeting since the general election.
23 July 2010
The next South East Coast Muscle Group meeting has been booked for Monday 1 November,
2pm - 4pm, at Premier Inn: Crawley South, 45 Goffs Park Road, Crawley, West Sussex RH11 8AX.
Read more...
New members always welcome! Stay tuned for more information about guest speakers at the meeting!
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The next South Central Hampshire Muscle Group meeting has just been booked for Friday 15 October 10.30am - 12.30pm at the Holiday Inn Express, Southampton M27, JCT.7, Botley Road - West End, Southampton, SO30 3XA. New members always welcome!
Find out more...
22 July 2010
Trailblazers are launching an investigation into tourism today to find out whether disabled holiday makers are missing out at Britain's tourist attractions.
Find out more about the investigation and how you can have your say over the next three weeks...
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Stephen Lloyd, MP for Eastbourne, has backed the fight for better neuromuscular services in Kent, Surrey and Sussex - the NHS South East Coast region. Mr Lloyd, whose constituent Phillippa Farrant is the chair of the Muscular Dystrophy Campaign's regional patient group - the South East Coast Muscle Group - has tabled House of Commons Early Day Motion 577.
Ask your MP to add their names now. Find out who your MP is or contact the Campaigns Team on 0207 803 2865 for more ideas about getting in touch with your local politician.
21 July 2010
The next Yorkshire and Humber Muscle Group meeting has been booked for Friday 27 August from 11am - 1pm in Hull - find out more...
New members always welcome!
20 July 2010
Over 40 people came along to yesterday's meeting of the South East Coast Muscle Group in Crawley, where families had the chance to quiz NHS Commissioners on their plans to fix local neuromuscular services. Members also received a research update from the Muscular Dystrophy Campaign's Director of Research, Dr Marita Pohlschmidt, and discussed respite care in the region.
The next meeting of the Muscle Group is due to take place in late October / early November in Crawley - new members always welcome, so stay tuned for more details!
19 July 2010
Scottish Deputy First Minister and Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP, has been confirmed as keynote speaker at the Muscular Dystrophy Campaign's Scottish Conference in October. Find out more...
16 July 2010
Rt Hon Chris Huhne MP, Secretary of State for Energy and Climate Change and Member of Parliament for Eastleigh, attended this afternoon's South Central Hampshire Muscle Group meeting in Southampton and expressed his support for local families living with muscle disease. Read more...
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Come along to the next South East Coast Muscle Group meeting on Monday 19 July, 2pm - 4pm, at Premier Inn: Crawley South, 45 Goffs Park Road, Crawley, West Sussex RH11 8AX.
Andrew Bibby, Associate Director of the South East Coast Specialised Commissioning Group will be at the meeting and there will be an opportunity to hear a research update from the Muscular Dystrophy Campaign's Director of Research, Dr Marita Pohlschmidt. Find out more...
15 July 2010
Anyone affected by muscular dystrophy in Hampshire is invited to come along tomorrow to the South Central Hampshire Muscle Group meeting: 2pm - 4pm, at the Holiday Inn Express, Southampton M27, JCT.7, Botley Road - West End, Southampton, SO30 3XA. Find out more...
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The next South Central Thames Valley Muscle Group has been booked for Saturday 16 October from 10.30am-12.30pm at St Nicolas Church, Sutcliffe Avenue, Earley, Reading, RG6 7JN
The Muscle Group will hear an update on all the latest developments in neuromuscular research from Dr Kristina Elvidge, Research Communications Officer at the Muscular Dystrophy Campaign.
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Over 50 campaigners and supporters from across Wales, as well as Assembly Members, gathered at the Welsh Assembly for the launch of the Cross Party Group on Muscular Dystrophy's Thomas Report yesterday. The report calls for urgent action to address the gaps in specialist neuromuscular care in Wales.
Read more and watch ITV Wales coverage of the event.
14 July 2010
The Welsh Assembly's Cross Party Group (CPG) on Muscular Dystrophy's new report, The Thomas Report: Access to Specialist Neuromuscular Care in Wales, is being launched today in the Welsh Assembly following a nine month review chaired by Dr Dai Lloyd AM.
Patients, families and clinicians from across Wales are meeting Assembly Members (AMs) to discuss the report's findings and recommendations. The report is being presented to Health Minister Edwina Hart AM.
13 July 2010
The Muscular Dystrophy Campaign has released a statement expressing serious concerns about Health Secretary Andrew Lansley's new-model NHS described in yesterday's White Paper, fearing that it will put people with rare conditions at risk. Read the statement in full...
12 July 2010
The North West Specialised Commissioning Group is meeting today with patient representatives, clinicians and the Muscular Dystrophy Campaign on the review of neuromuscular services in the region. Find out more about the North West Muscle Group...
9 July 2010
Good luck to Campaigns Team runners, Nic and Alexandra, in the British 10k run in London on Sunday.
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