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!
19 March 2010
Muscle Groups all round the country are celebrating the news that their campaigning has paid off - nineteen new and newly secured care advisors will be joining the fight against muscle disease across the UK with the Muscular Dystrophy Campaign. Following campaigning by the Yorkshire and Humber, South West and South Central Muscle Groups, eight of these posts are brand new roles that have been created by the NHS, including five in the South West, and one each in Hull, Sheffield and Southampton.
Find out more about the army of care advisors here.
Three members of the Campaigns Team – Nic, Bobby and Alexandra – are taking to the roads on Sunday to raise vital funds for the Muscular Dystrophy Campaign. The trio are running the Reading Half Marathon, alongside MDC Press and PR Manager Dominique. This is our first half marathon so wish us luck, and if you would like, you can sponsor us here.
18 March 2010
Dave Anderson MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy has tabled a number of Parliamentary Questions as part of the fight to improve specialist neuromuscular services in the West Midlands region - you can read the questions here (numbers 164-167). The Secretary of State for Health is due to answer the questions this week. The West Midlands Muscle Group is still waiting to hear if regional NHS bosses have approved the recommended investment - stay tuned to Campaign Bites for the latest news.
17 March 2010
Specialist neuromuscular clinicians from Kings College Hospital, the Evelina Children's Hospital and the Lane Fox Unit at St Thomas' Hospital met with Commissioners from the South East Coast Specialised Commissioning Group (SECSCG) and the Muscular Dystrophy Campaign yesterday to discuss neuromuscular services for people living in Kent, Surrey and Sussex.
The meeting was part of an ongoing work between the SECSCG, the Muscular Dystrophy Campaign and the South East Coast Muscle Group to fix specialist care in the region - find out more and get involved here
Dave Anderson MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy has tabled a number of Parliamentary Questions as part of the fight to improve specialist neuromuscular services in the West Midlands region - you can read the questions here (numbers 164-167). The Secretary of State for Health is due to answer the questions this week. The West Midlands Muscle Group is still waiting to hear if regional NHS bosses have approved the recommended investment - stay tuned to Campaign Bites for the latest news.
16 March 2010
We need your views! Please fill in our 2010 national patient survey and share your thoughts about living with muscle disease - to help us campaign for improvements to neuromuscular services in your local area.
15 March 2010
Trailblazers are busy prepraing for the launch of their next investigation into employment and disabled people. If you have a positive or negative experience of employment as a disabled person please get in touch and let us know your thoughts.
12 March 2010
Over 75 East of England Muscle Group members shared their experiences of services at the East of England Conference today as the campaign to improve services gathers pace. As well as discussing problems with access to specialist care at campaign workshops, Muscle Group members heard about the progress of the review of East of England neuromuscular services that is underway and the crucial need for Care Advisor posts in the region.
There were also updates for attendees about the latest research developments, care and support for families and volunteer fundraising opportunities.
11 March 2010
South West Muscle Group members have published their Respite Care Manifesto - which states:
We believe that every family or individual living with muscle disease in the south west region should be offered a minimum of three weeks respite a year as standard across every PCT and local authority.
Muscle Group members will be taking the manifesto to their local MPs and Councillors and ask for their support in the fight for essential respite care. Find out who your MP is.
10 March 2010
The next meeting of the South West Muscle Group has also been confirmed for Saturday 3 July from 2pm to 4pm at the Holiday Inn Taunton M5, Jct.25, Deane Gate Avenue, Taunton, TA1 2UA - new members always welcome.
9 March 2010
The All Party Parliamentary Group for Muscular Dystrophy held its latest meeting today with Parliamentarians turning the spotlight on NHS Specialised Commissioning Groups. The East of England, London, South Central and Yorkshire and Humber regions were represented at the session, which was covered by local BBC and ITV regions. Read more about the details of the session.
8 March 2010
Over 50 people took part in a fantastic meeting of the South West Muscle Group in Taunton on Saturday, and received copies of a ground-breaking report into Hydrotherapy - a comprehensive directory of all hydrotherapy pools in the region which was compiled by Muscle Group member, Khurm Arshad.
The Muscle Group also received an update from Jennie Shine, the South West Neuromuscular Network Manager, and had the chance to quiz Christine Jupp, Planning and Development Manager at North Somerset Council about Direct Payments and individual budgets. Action points of the meeting will be uploaded soon onto the South West Muscle Group page - stay tuned.
5 March 2010
North West campaigners joined forces today in Liverpool as the fight for better access to services in the region continues. North West Muscle Group members shared their experiences of services at today's meeting and local MP, Louise Ellman, pledged her support for the campaign. The North West Trailblazers Group was also launched today with Trailblazers from the region meeting to discuss possible local campaigns.
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The next meeting of the West Midlands Muscle Group has just been confirmed for Thursday 22 April, 7pm - 9pm, at the Holiday Inn Express, Birmingham NEC, Bickenhill Parkway, Birmingham B40 1QA. Read more about the event...
New members welcome!
4 March 2010
Over 30 families and supporters attended the special care coordination session of the Welsh Cross Party Group on Muscular Dystrophy Review yesterday evening, chaired by Dr Dai Lloyd AM.
Find out more about the campaign for essential care, support and advice in Wales.
3 March 2010
Bobby and Tanvi are in Manchester today on behalf of Trailblazers for the 2010 NUS Disabled Students Conference. Keep up to date with forthcoming Trailblazers events.
2 March 2010
Robert was interviewed by Banbury Sound FM today and slammed the regional NHS for not making a long-term commitment to fund the vital Care Advisor post in Oxford. South Central is the only NHS region in England where funding for the local Neuromuscular Care Advisor has not been picked up by the NHS on a permanent basis. Instead the Specialised Commissioning Group seems to expect hard working volunteers to run marathons and abseil off buildings to pay for this essential clinical post.
Find out more about the battle to save the Oxford Care Advisor post and sign the online petition.
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Join us in Liverpool on Friday 5 March for the latest North West region developments at the North West Muscle Group meeting and the launch of the North West Trailblazers Group.
1 March 2010
The next APPG for Muscular Dystrophy session on NHS Specialised Commissioning is taking place in Committee Room 8 of the Houses of Parliament on Tuesday 9 March from 11am - 12.30pm. Oral evidence at the session is being provided by representatives from the NHS Specialised Commissioning Groups in the East of England, London, South Central and Yorkshire and Humber regions following the hard-hitting recommendations of the Walton Report. To find out more and to attend the meeting, please get in touch on 020 7803 4839 or campaigns@muscular-dystrophy.org
26 February 2010
Over 30 families from across the East Midlands joined forces today to fight for better muscle services at the latest East Midlands Muscle Group meeting. They were joined by local MP, Mark Todd, who pledged his support and signed the petition calling for an end to patients' postcode lottery. East Midlands Specialised Commissioning Group Director, Kate Caston, and Head of Strategy and Planning, Christine Richardson, were also present to discuss neuromuscular services in the region. To join the Muscle Group, or for more information, get in touch on 0207 803 4847 or campaigns@muscular-dystrophy.org
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South Central Muscle Group: Hampshire meeting just booked - Friday 16 April, 10.30am-12.30pm at the Holiday Inn Express, Southampton M27, JCT.7, Botley Road, West End, Southampton, S030 3XA. Find out more...
New members welcome!
25 February 2010
The Muscular Dystrophy Campaign has submitted its response to the consultation ‘Strengthening National Commissioning', emphasising the importance of effective commissioning for people living with muscle disease.
Strengthening National Commissioning Consultation Response
24 February 2010
South Central Muscle Group: Milton Keynes meeting just booked for Monday 29 March 2010, 10.30am-12.30pm at the Express by Holiday Inn Milton Keynes, Tongwell Street, Fox Milne, Milton Keynes, MK15 0YA. Read more about the event.
New members welcome!
23 February 2010
Louise Ellman, MP for Liverpool Riverside, will be lending her support to the North West Muscle Group by attending the next meeting in Liverpool on Friday 5 March at 2pm.
22 February 2010
The Muscular Dystrophy Campaign have responded to a government consultation on Housing Benefit recommend urgent action to reform the Local Housing Allowance to enable people to continue to lead independent lives with live-in support, if necessary. Local Housing Allowance has replaced Housing Benefit for new claimants living in privately rented accommodation. Read the response and find out more information about the fight to fix Local Housing Allowance.
19 February 2010
Regional Trailblazers groups are being launched across the UK - keep up to date with the latest news and the forthcoming launch events.
18 February 2010
Rt Hon William Hague MP has signed the petition to end patients' postcode lottery. He is supporting the Yorkshire and Humber Muscle Group as one of its patrons alongside Terry Rooney, MP for Bradford North, and Greg Mulholland, MP for Leeds North West, and the Earl and Countess of Swinton.
Read more about William Hague's support for the Yorkshire and Humber Muscle Group.
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We have launched our 2010 national patient survey about living with muscle disease - we need your views to help us campaign for improvements to neuromuscular services in your area.
17 February 2010
Come along to the next East Midlands Muscle Group meeting on Friday 26 February at 11am at the Ramada Jarvis Nottingham Hotel in Long Eaton where Mark Todd, MP for South Derbyshire, and Kate Caston, East Midlands Specialised Commissioned Group Director, have been confirmed as speakers.
Keep up to date with the campaigning activity of the East Midlands Muscle Group.
16 February 2010
Yesterday evening ITV Central News featured a moving piece about Jane Field's battle, on behalf of her son Murray, for better specialised services for people with muscle disease. Jane, who is the co-chair of the West Midlands Muscle Group, is personally phoning all 17 PCT Chief Executives in the region to press them to agree to the West Midlands Neuromuscular Strategy.
Find out more about the West Midlands Muscle Group.
15 February 2010
The All Party Parliamentary Group (APPG) for Muscular Dystrophy has received notification that representatives from the East of England, London, South Central and Yorkshire and the Humber Specialised Commissioning Groups will be attending the APPG's NHS Specialised Commissioning session in the Houses of Parliament on Tuesday 9 March at 11am.
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The campaign for improved access to specialist neuromuscular care in Northern Ireland continued at a meeting of the Northern Ireland Council on Saturday. Conall McDevitt, MLA for South Belfast, attended the meeting and highlighted the campaign's key issues on his blog.
12 February 2010
On Monday 15 February the London Muscle Group will be meeting for the second time, and will be joined by Sean Overett, London Specialised Commissioning Group Divisional Director for North East London - come along to the Royal London Hospital in Whitechapel from 11am to 1pm and join the fight to improve services in the NHS London region.
11 February 2010
17 MPs have now signed the House of Commons Early Day Motion tabled by Lorely Burt, MP for Solihull, calling on the NHS West Midlands Specialised Commissioning Group (SCG) to urgently approve the regional Neuromuscular Strategy which proposes to fix specialist services for the 5,500 people living with muscle disease in the West Midlands. Has your MP added their name? If not, get in touch with the Campaigns team on 0207 803 2865 or campaigns@muscular-dystrophy.org
10 February 2010
Families in Hampshire living with muscle disease have launched a campaign calling on local NHS bosses to fund a Neuromuscular Care Advisor - to provide essential support for the 1,700 people in the county living with these rare and very rare conditions. Add your name now to their online survey
The campaign has been backed by Romsey MP Sandra Gidley, who met the campaigners at their last Muscle Group meeting in her constituency in January, and yesterday tabled House of Commons Early Day Motion 825: Neuromuscular Care in Hampshire. All Hampshire MPs are now being asked to add their names to the motion.
9 February 2010
Bobby and Tanvi are back from Falkirk after the successful launch of Trailblazers in Scotland. Over 40 people joined us at the Hotel Cladhan where the group received campaigns training and discussed ideas for new investigations. Find out more on the Trailblazers' website
8 February 2010
On Saturday families from across Scotland joined forces to fight for better muscle services, at the launch of their new campaigning coalition, the Scottish Muscle Group, in Falkirk. They were joined by local MP Eric Joyce who pledged his support for the Muscle Group. To join the Muscle Group, or for more information, get in touch on campaigns@muscular-dystrophy.org or 0207 803 2853
5 February 2010
Jane Field, co-chair of the West Midlands Muscle Group, is personally phoning all 17 PCT Chief Executives in the region to demand better healthcare for her son, Murray, who has Duchenne muscular dystrophy, and thousands of other people in the region living with muscle disease. A decision on the proposed West Midlands Neuromuscular Strategy is due to be taken this month by the regional Specialised Commissioning Group.
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The East of England Neuromuscular Services Review Group held its first meeting today, with East of England Specialised Commissioning Group officials, patient representatives, clinicians and the Muscular Dystrophy Campaign in attendance. A Project Manager will shortly be appointed by the Review Group to lead the neuromuscular services development strategy. Stay tuned for further developments on the review and campaign in the region...
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Dave Anderson MP, Chair of the All Party Parliamentary Group (APPG) for Muscular Dystrophy, has highlighted the NHS failings and ‘postcode lottery' of provision of neuromuscular services in the UK in an article in the New Statesman magazine. Dave Anderson also explained his personal connection with muscle disease, the continued campaigning of the APPG and the fight against muscle disease by the Muscular Dystrophy Campaign's Muscle Groups across the UK.
Read the article in full.
4 February 2010
The Welsh Assembly's Cross Party Group on Muscular Dystrophy will be holding its next Review evidence session on 3 March at 6pm in Conference Room 24, Ty Hywel, National Assembly for Wales, Cardiff. The focus will be on the importance of the muscular dystrophy care coordinator and the lack of one in Wales - read more about the session.
3 February 2010
The NHS West Midlands Specialised Commissioning Group (SCG) has been urged by Solihull MP, Lorely Burt, to approve the regional Neuromuscular Strategy. A House of Commons Early Day Motion, Neuromuscular Care, was tabled yesterday urging the SCG to approve the plan to fix care in the region, which had been commissioned by the NHS and endorsed by families and clinicians. West Midlands MPs are being encouraged to sign the Early Day Motion and throw their weight behind the proposals. A decision is due to be made this month on the funding of the plan.
Read more about the latest developments in the West Midlands...
2 February 2010
Come along and share your experiences of services at the next North West Muscle Group meeting, which is taking place in Liverpool on Friday 5 March.
1 February 2010
A brand new section dedicated to Muscle Groups across the UK has been set up on the Muscular Dystrophy Campaign website. Join the fight for improved services and catch up on the latest news and forthcoming events in 10 English regions, Northern Ireland, Scotland and Wales.
Find out more in the new Campaign Muscle Groups section.
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A new Scottish Muscle Group and a new Scotland Trailblazers group will both be launched in Falkirk at Hotel Cladhan, Kemper Avenue, Falkirk, FK1 1UF on Saturday 6 February from 12pm to 3pm - come along and find out about forthcoming campaigning activity.
29 January 2010
The South East Coast Muscle Group held a successful meeting in Crawley at which Andrew Bibby, Associate Director of Commissioning at the South East Coast Specialised Commissioning Group, held an in-depth discussion with Muscle Group members about the need for the NHS to improve neuromuscular services in the region. Get in touch on 020 7803 2865 or campaigns@muscular-dystrophy.org to find out more about the meeting and the campaign in the region.
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Rt Hon William Hague MP has joined fellow Yorkshire and Humber Parliamentarians, Terry Rooney MP and Greg Mulholland MP, in agreeing to be patron of the Yorkshire and Humber Muscle Group. Their official support is welcomed and greatly valued as the fight to improve services in the region is stepped up.
28 January 2010
Ray Thomas gave a moving, in-depth interview to the BBC yesterday to highlight the shocking gaps in specialist neuromuscular care in Wales as the Welsh Assembly's Cross Party Group on Muscular Dystrophy Review heard views and appalling experiences from families across Wales living with muscle disease.
Watch Ray Thomas' BBC interview
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A young woman from Sussex with a rare neuromuscular condition has successfully appealed against her Disability Living Allowance decision with the advocacy support of the Policy and Campaigns Team. She will now receive the middle rate of the care component - an extra £30 a week - giving her the means to live independently.
27 January 2010
Campaigners from across Wales are giving their views and sharing their experiences of neuromuscular services at the Cross Party Group on Muscular Dystrophy Review session in the Welsh Assembly today. Find out more about the session
26 January 2010
Anyone living with, or with an interest in, muscle disease is invited to the next meeting of the South East Coast Muscle Group taking place on 27 January from 2pm - 4pm at which Andrew Bibby, Associate Director of Commissioning at the South East Coast Specialised Commissioning Group, is attending. The full address for the venue is Three Bridges Community Centre, Gales Place, Three Bridges (near Crawley), RH10 1QG.
25 January 2010
The South West Trailblazers will be holding their first ever regional group meeting on Saturday 6 March at the Express by Holiday Inn, Taunton.
The meeting will include a presentation by local campaigner Steve Ledbrook who has been involved in campaigns with the South West Muscle Group as well as taking on inaccessible leisure facilities in Weston-Super-Mare.
Find out about the event on the Trailblazers website.
22 January 2010
Come along to the next East Midlands Muscle Group meeting in Nottingham on Friday 26 February at which Kate Caston and Christine Richardson from the NHS East Midlands Specialised Commissioning Group will be attending.
21 January 2010
The next London Muscle Group meeting has been booked - come along to the Royal London Hospital in Whitechapel on 15 February from 11am to 1pm and join the fight to improve services in the NHS London region.
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Anyone living with, or with an interest in, muscle disease is invited to the next meeting of the West Midlands Muscle Group taking place this evening at which local MP Siộn Simon is attending. The time and venue are 6.30pm - 8pm, Highcroft Sports and Social Club, Slade Rd, Erdington, Birmingham B23 7JG.
20 January 2010
Yesterday's positive and encouraging All Party Parliamentary Group for Muscular Dystrophy meeting was covered by BBC East Midlands. The news story focused on Margot Keats' battle for better services supported by South Derbyshire MP, Mark Todd. The piece also includes the
East Midlands Specialised Commissioning Group's commitment to co-ordinating a regional review of all hospital treatment for patients with a range of neuromuscular disorders over the next 12 months. Read the news story in full.
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A brand new Scotland Trailblazers group will be launched in Falkirk on Saturday 6 February. Come along and find out about the plans for future Trailblazers in Scotland meetings and campaigning activity. Find out more about the event on the Trailblazers website.
19 January 2010
The All Party Parliamentary Group for Muscular Dystrophy held its latest meeting today with Parliamentarians turning the spotlight on NHS decision makers. The East Midlands, North East, North West and South East Coast regions were represented - news of the discussions to follow soon on this website.
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Eric Joyce, MP for Falkirk, and Cathy Peattie, MSP for Falkirk East, will be joining campaigners at the Scottish Muscle Group launch in Falkirk on Saturday 6 February.
18 January 2010
Siộn Simon, Member of Parliament for Birmingham Erdington, and Parliamentary Under Secretary of State (Creative Industries) will be joining local families at the next meeting of the West Midlands Muscle Group taking place this Thursday evening: 6.30pm-8pm at the Highcroft Sports and Social Club, Slade Road, Erdington, Birmingham, B23 7JG. All new members welcome.
15 January 2010
The latest South Central Muscle Group meeting was held in Southampton earlier today, attended by over 40 families and supporters as well as local MP, Sandra Gidley, and Southampton clinician, Dr Simon Hammans. Muscle Group members have agreed to campaign for the creation of a new Care Advisor post in Southampton, funded by and embedded in the NHS as part of the plan for specialist neuromuscular services in the South Central region. Stay tuned for further details about campaigning activity in the region...
14 January 2010
The rearranged South West Muscle Group has been booked for Saturday 6 March from 2pm to 4pm at the Express by Holiday Inn in Taunton (M5 Jct.25, Blackbrook Business Park, Taunton, TA1 2PX)
The Muscle Group will be joined by South West Neuromuscular Network Manager, Jennie Shine, and will be discussing the new neuromuscular strategy, their hydrotherapy campaign and the fight to improve access to respite and short breaks.
13 January 2010
The East of England Conference is booked for Friday 12 March at Addenbrooke's Hospital in Cambridge.
12 January 2010
A new record of Campaigns' publications, Hard-hitting reports, has been set up in the Campaigns section of the website. Browse through and download the Muscular Dystrophy Campaign's reports which underpin the fight against muscle disease.
Robert Meadowcroft, Director of Policy and Services, commented:
These reports will be an essential resource for families and people living with a neuromuscular condition who want to back our campaigns for improved health care and support across the UK. Clinicians and NHS commissioners can also use the evidence in these hard hitting reports to take steps to address the issues we have highlighted.
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Anyone living with, or with an interest in, muscle disease is invited to the next meeting of the South Central Muscle Group taking place this Friday, 15 January, in Southampton. Those attending include local MP, Sandra Gidley, and Dr Simon Hammans, a clinician from Southampton. New members are always welcome!
11 January 2010
An eighteen year old young man with Duchenne muscular dystrophy will soon be enjoying the use of a Neater Eater and a mobile arm support after his family, with the support of the Muscular Dystrophy Campaign, won a battle with the local council to secure funding for these vital pieces of equipment. With the Neater Eater and mobile arm support, he will be able to eat independently and it will help him fulfil his plans to go to college.
The Policy and Campaigns Team offers free advocacy support and are here to help anyone affected by muscle disease who is experiencing difficulties.
8 January 2010
The East Kilbride News has reported on the continuing fight to improve essential services for people living with muscle disease in Scotland - read the article.
7 January 2010
The South West Muscle Group meeting in Taunton on Saturday 9 January has been cancelled due to the snow. A new date for the meeting will be posted here and on Campaign events in due course.
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The Early Day Motion in Parliament supporting the Trailblazers' Inclusion Now campaign, tabled by Dave Anderson MP, has been signed by 34 MPs so far. Has your MP signed the motion?
If your MP has not signed, contact Bobby on 020 7803 4807 to find out how to get your MP to add their name.
6 January 2010
A new Cross Party Group in the Scottish Parliament on Muscular Dystrophy is being launched today by Jackie Baillie MSP. The Muscular Dystrophy Campaign will be providing support for the new Cross Party Group, which will ensure that the needs of people living with muscular dystrophy are highlighted in the Scottish Parliament and will press for improvements to essential services for families across Scotland. Read more about the launch
5 January 2010
Muscular Dystrophy Campaign representatives this morning met with Simon Jupp of South Central Specialised Commissioning Group and Nadia Chambers of South Central Strategic Health Authority. Stay tuned for more news about the battle to improve services in the region...
4 January 2010
The very first Policy and Campaigns E-newsletter has been launched - if you missed any of the latest news in the Christmas rush, read the first edition and join the fight to urgently improve access to NHS specialist care and support.
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Anyone living with, or with an interest in, muscle disease is invited to the next meeting of the South West Muscle Group taking place this Saturday, 9 January, in Taunton. Local MP, Jeremy Browne, will be attending - new members are always welcome!
For more information about the work of the Campaigns Team, please get in touch:
020 7803 4847
campaigns@muscular-dystrophy.org
