Forum Replies Created
September 13, 2013 at 10:45 am #90788Re: Naked In The Jungle……
Thanks for all your comments and we’re concerned to hear about the difficulties you’ve experienced.
We are represented on the new neuromuscular Operational Delivery Network – which will essentially be the same as the ‘South West Neuromuscular Network’ which was in place before the NHS changes took place in April.
The network is meeting next month so we can raise the problems you’ve shared regarding support and communication and discuss improvements. We hope that there will be progress on the neuromuscular advisor recruitment process at that meeting and we will share any news as soon as we receive it.
JonathanFebruary 11, 2011 at 4:55 pm #79148Re: PLEASE READ AND RESPOND
Many thanks for all your comments and concerns raised. The Muscular Dystrophy Campaign is submitting a response to the DLA Reform consultation, the deadline for which has actually today been extended to Friday 18 February.
The launch of the All Party Parliamentary Group for Young Disabled People next Wednesday 16 February will indeed give us a chance to raise the issues in this thread.
JonathanJanuary 31, 2011 at 9:40 am #78683Re: VAT on extension
Thanks for posting the above info and contacting your MP. We’re happy to support and, as discussed in my email, will be interested to hear a Government response on this important issue.
We are not currently aware of any petition or campaign being conducted on this issue, and we are ready to assist with putting people in touch with their MP on this issue to move things forward.
JonathanJanuary 17, 2011 at 3:17 pm #78681Re: VAT on extension
Many thanks for raising this very important issue on here. We will check whether there are any campaigns/Facebook pages etc already set up and get back to you shortly about how we can best support you on this.
JonathanNovember 23, 2010 at 5:22 pm #77526Re: WCA Review
Thanks for posting the link to the DWP website – that is very helpful.
The Muscular Dystrophy Campaign and Trailblazers have endorsed the recommendations to improve the flawed Work Capability Assessment (WCA) – the process used to assess eligibility for the out of work disability benefit – Employment and Support Allowance (ESA), following an independent review carried out by Professor Malcolm Harrington.October 4, 2010 at 2:22 pm #76694Re: Warning over potentially alarming cuts in research fundi
There are concerning long-term implications. A Muscular Dystrophy Campaign letter published in the Guardian warns that potential research funding cuts 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…October 1, 2010 at 11:11 am #76921Re: Scottish Conference
I’m not going to the conference myself but from a campaigning perspective my colleague, Nic Bungay, will be running a campaigning workshop. It will also be interesting to hear what Nicola Sturgeon has to say in response to the Mackie Report published earlier in the week.
JonathanSeptember 16, 2010 at 3:46 pm #75747Re: Say “hello” here
My name is Jonathan and I’m in the Policy and Campaigns Team at the Muscular Dystrophy Campaign. I’ve been at the charity for nearly 3 years and the main focus of my work is on the charity’s parliamentary activity across the UK.
I will be posting topics about campaigning news in the News and Campaigns section and joining in the discussions. I look forward to hearing your thoughts on the key issues.
Let me know if you have any questions about campaigning and getting involved in the campaigning Muscle Groups in your area.