All Party Parliamentary Group for Muscular Dystrophy - have your say

The All Party Parliamentary Group (APPG) for Muscular Dystrophy is a group of MPs and Peers in the Houses of Parliament which raises awareness of all types of muscle-wasting conditions and promotes links between parliament, individuals and families affected by these conditions, charities and scientists, health professionals and decision-makers. The APPG is chaired by Dave Anderson MP, whose family has been affected by myotonic dystrophy.

In the last two years the APPG, with the support of Muscular Dystrophy UK, has produced reports on: the impact of NHS reforms on access to neuromuscular services, newborn screening, and access to high-cost drugs for rare disease services, and taken a prominent position in calling for fast access to the new Duchenne muscular dystrophy treatment, Translarna.

The APPG and Muscular Dystrophy UK continue to monitor the implementation of recommendations in these reports and put pressure on governments and relevant organisations to take swift and effective action.

Following the general election held on Thursday 7th May, Muscular Dystrophy UK, as the official secretarial support for the APPG, is conducting a brief survey on topics and issues for consideration by the APPG and welcomes input from individuals and organisations with an interest in the group.

The closing date for the survey is Friday 29th May.

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* 1. We would be grateful if you could provide contact details so that we can follow up on comments and views.

Name:

Organisation (if applicable)

Address Line 1:

Address Line 2:

City/Town:

County

Postcode:

Email Address:

Phone Number:

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* 2. What would be your top three suggestions for topics for MPs and Peers in the APPG for Muscular Dystrophy to consider over the next Parliament?

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* 3. Research into muscle-wasting conditions – we want you to help to shape the APPG’s work over the course of the next two years. Please rank the following in order of importance to you to focus on (1-5 with 1 being top priority); there is also an opportunity to comment below in Question 7 if you have an additional issue to suggest to the APPG:

Improving the set-up for clinical trials to take place and to develop patient registries and databases further

Early access to new treatments and putting pressure on the European Medicines Agency to speed up granting conditional approval for potential treatments when safety and effectiveness have been demonstrated

NICE and the need for a fair and transparent assessment process for new treatments, so that they are not denied simply on the grounds of high cost and patients and families are not disadvantaged

Ensure that NHS England has specific funding available for often high-cost treatments for rare diseases which have been granted a licence

Research developments into quality of life issues

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* 4. Addressing gaps in specialist care and support across the country – we want you to help to shape the APPG’s work over the course of the next two years. Please rank the following in order of importance to you to focus on (1-5 with 1 being top priority); there is also an opportunity to comment below in Question 7 if you have an additional issue to suggest to the APPG:

Increasing the number of neuromuscular centres of excellence across the country

The need for more neuromuscular care advisors providing specialist care, support and advice to people with muscle-wasting conditions

Improvements to specialist wheelchair service provision

Access to ongoing specialist physiotherapy and hydrotherapy

The need for more frequent access to a neuromuscular consultant

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* 5. Welfare and other support for people with muscle-wasting conditions – we want you to help to shape the APPG’s work over the course of the next two years. Please rank the following in order of importance to you to focus on (1-5 with 1 being top priority); there is also an opportunity to comment below in Question 7 if you have an additional issue to suggest to the APPG:

Reviewing the implementation of the Personal Independence Payments system and the criteria which have been used

Medical professionals’ knowledge of muscle-wasting conditions who carry out assessment for benefits

Qualifying for Motability through the mobility allowance

Home adaptations

Amount and qualification for Disabled Facilities Grants for home adaptations

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* 6. Removing barriers and promoting independence – we want you to help to shape the APPG’s work over the course of the next two years. Please rank the following in order of importance to you to focus on (1-4 with 1 being top priority); there is also an opportunity to comment below in Question 7 if you have an additional issue to suggest to the APPG:

Access to schools and higher education institutions, and support through education

Access to employment

Access to public transport and driving

Access to leisure facilities including sport, cinemas and the high street

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* 7. Please comment if you have an additional issue to suggest to the APPG which has not been raised in questions 3-6.

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* 8. Have you attended an All Party Parliamentary Group for Muscular Dystrophy (APPG) meeting and/or report launch event?

Yes

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* 9. Have you sent a written/email submission to the APPG before?

Yes

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* 10. If Yes to Q8 or Q9, which APPG inquiry have you taken part in? (tick as many as appropriate)

Walton Report inquiry

Access to high-cost drugs for rare diseases inquiry

Newborn screening inquiry

Impact of NHS reforms inquiry

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* 11. Would you like to be added to an APPG for Muscular Dystrophy list to receive notifications about forthcoming meetings?

Yes

Thank you for taking part in the survey.