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.
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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Over 40 members of the West Midlands Muscle Group met last night in Birmingham, to share advice and support, and campaign for better services. At the meeting the Group was joined by Emma Gallagher, Lead Respiratory Physiotherapist at Birmingham Heartlands Hospital for a Q&A on respiratory care for people with neuromuscular conditions. Action points from the meeting will be available early next week. If you live in the region, and want to join the Muscle Group, please get in touch on campaigns@muscular-dystrophy.org or 0207 803 2865.
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Baroness Thomas of Winchester, Treasurer of the All Party Parliamentary Group for Muscular Dystrophy, has been speaking up in the House of Lords about the closure of the Independent Living Fund (ILF) to new claimants - read her Parliamentary Question, and stay tuned for more information on how to get involved in the campaign to save the ILF.
8 July 2010
South Central Muscle Group members Laura and Lee Ison are setting up a PowerChair football team in Reading - if you want to get involved, get in touch on l.ison1@sky.com
7 July 2010
Come along to the next West Midlands Muscle Group meeting in Birmingham tomorrow evening, where the discussion will include topics such as respiratory care and physiotherapy.
6 July 2010
The All Party Parliamentary Group for Muscular Dystrophy held its first meeting of the new Parliament today. MPs and Peers from across the country discussed the provision of neuromuscular services with Phillippa Farrant, Mark, Jane and Murray Field, Margot Keats and Steve Ledbrook. Find out more...
5 July 2010
Families from across Reading, Oxfordshire and High Wycombe joined forces today at the South Central Muscle Group: Thames Valley for their first meeting in Berkshire - stay tuned for action points from the meeting!
2 July 2010
Anyone living with muscular dystrophy or a related neuromuscular condition in the Thames Valley area is invited to attend the next meeting of a local campaigning group fighting for better services which takes place on Monday 5 July: the Thames Valley South Central Muscle Group is meeting from 10.30am - 12.30pm at South Reading Youth & Community Centre, 252 Northumberland Avenue, Reading, Berkshire, RG2 7QA.
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The Scottish Cross Party Group Inquiry took positive steps forward on service development issues at its latest evidence gathering session attended by health professionals and Health Board representatives - read more...
1 July 2010
Anyone living with muscle disease in the South West is welcome to come along to the next meeting of the South West Muscle Group on Saturday 3 July from 2pm to 4pm in Taunton.
For more information about the work of the Campaigns Team, please get in touch:
020 7803 4847
campaigns@muscular-dystrophy.org
