How parliamentarians support us
We provide detailed briefings for our parliamentary supporters ahead of meetings, debates and questions. Parliamentarians in the Houses of Parliament, Scottish Parliament, Welsh Assembly and Northern Ireland Assembly support us in several ways. These include:
- meeting constituents with muscle-wasting conditions
- asking questions about access to neuromuscular services and treatments
- speaking in debates to highlight muscle-wasting conditions
- writing letters on behalf of constituents and Muscular Dystrophy UK
- supporting our cross party group activity
Getting in touch with parliamentarians
You can find your elected parliamentarians and their contact details using the lists and search functions:
- for MPs on the Parliament website
- for MSPs on the Scottish Parliament website
- for AMs on the Welsh Asssembly website
- for MLAs on the Northern Ireland Assembly website
Parliamentary groups on muscular dystrophy
There are parliamentary groups dedicated to muscular dystrophy and neuromuscular conditions in each of the Houses of Parliament at Westminster, Scottish Parliament, Welsh Senedd and Northern Ireland Assembly.
The aim of these groups is to raise awareness of all types of muscle-wasting conditions and promote links between parliament, individuals and families affected by these conditions, charities and scientists, health professionals and decision-makers.
These groups are run by and for Parliamentarians on specific topics, and Muscular Dystrophy UK provides the secretariat for the parliamentary groups across the UK. This means we are involved in setting up meetings, building agendas and providing background information to aide discussion at the meetings.
Across the nations
- The All-Party Parliamentary Group (APPG) on Muscular Dystrophy in Westminster is chaired by Mary Glindon MP.
- The Northern Ireland All Party Group on Muscular Dystrophy is chaired by Linda Dillon MLA.
- The Cross-Party Group in the Scottish Parliament on Muscular Dystrophy is chaired by Jackie Baillie, MSP.
- The Cross-Party Group for Muscular Dystrophy in the Senned Cymru/Welsh Parliament is chaired by Rhun Ap Iorwerth AS/MSMP.
Upcoming Meetings
- Westminster APPG on newborn screening for rare conditions - May 2023
- Scotland CPG Meeting on National Care Service - September 2023
- Wales CPG Meeting on business case and service specification - May 2023
- Northern Ireland Meeting - details tbc
Work of Cross Party Groups to date
Westminster APPG
In April 2023, the All-Party Parliamentary Groups for Muscular Dystrophy met to discuss the findings from the inquiry into newborn screening of rare conditions in the UK. Having heard numerous powerful testimonies from experts and people living with muscle-wasting conditions, there is clear evidence that timely and accurate diagnosis and treatments of rare diseases, including SMA, would lead to much better outcomes. Many countries across the globe already have more conditions screened compared to the UK, and the APPG made several recommendations for changes to the current UK NSC approach to assessing rare conditions so that they can be included in the UK newborn screening programme. Full minutes of the meeting can be found here:
In October 2022, the APPG hosted a meeting on the cost of living with a muscle wasting condition.
In May 2022 a roundtable meeting was held to discuss how the introduction of Integrated Care Systems can improve neuromuscular services:
In July 2021, MDUK launched our ‘Shining a Light’ report at the APPG on Muscular Dystrophy which looked at how Covid-19 exacerbated already existing barriers to neuromuscular care and sets out key recommendations to help services, not only recover from the pandemic, but to strengthen them going forward.
In 2020, the APPG met to discuss the impact of Covid-19 on people with a muscle-wasting condition. The group was joined by leading health professionals in the neuromuscular field and people living with muscle-wasting conditions to share their experiences. The APPG were also given the opportunity to informally chat one-to-one with people living with muscle-wasting conditions and patient organisation representatives.
In 2019, APPG meetings focused on access to orphan medicines, the impact of Brexit, and ambulance flagging for patients with muscular dystrophy and neuromuscular conditions at high risk.
In 2018, the APPG met to discuss their report on access to psychological support for people with a neuromuscular condition.
Other recent work of the APPG includes hearing testimonies from families whose children could benefit from Spinraza, discussing access to other treatments; and talking about an audit into unplanned admissions to hospital in patients with neuromuscular diseases in London and the South-East. The APPG has also previously discussed disability benefits (PIP payments review) – with representatives from DWP; as well as developing and streamlining the treatment assessment process (including an access to Translarna update and Duchenne muscular dystrophy treatment Exondys 51).
The Northern Ireland All Party Group on Muscular Dystrophy
In February 2022, MDUK launched their Northern Ireland ‘Shine a Light’ report which captured the experiences of people with a muscle-wasting condition during the Covid-19 pandemic and access to services, identifying key recommendations to improve services going forward.
In 2021, a session was held on the impact of the pandemic to feed into MDUK’s Shine a Light report. The group also discussed delayed access to treatments due to Covid-19 regarding Translarna for Duchenne muscular dystrophy and Risdiplam and Spinraza for Spinal Muscular Atrophy).
In 2019, Northern Ireland APG attendees were updated on the Fast Track access to treatments campaign and the Mental Health Matters campaign. They were also updated on the Neuromuscular Forum that met in February 2019 and October 2019; and given a service provision update. Towards the end of 2019 the All Party Group also discussed the progress of the Changing Places Campaign in Northern Ireland.
The Cross-Party Group in the Scottish Parliament on Muscular Dystrophy
In March 2023, the CPG met with the Minister of Mental Wellbeing and Social Care to discuss the progress and development of the National Care Service Bill.
On 30 September 2022, the CPG in Scotland was joined by representatives from the Scottish Government to discuss the introduction of the National Care Service Bill, and future opportunities to help 'co-design' a National Care Service in Scotland. Minutes of the meeting can be found below:
In June 2022, the Scottish CPG held a further meeting to discuss the publication of the Rare Disease Framework Action Plan. A summary of this discussion can be found by clicking the pdf link below.
In March 2022, the CPG held a meeting to discuss the Scottish Rare Disease Framework action plan, and work around SMA screening. In January 2022, MDUK launched our Scottish ‘Shine a Light’ report which captured the experiences of people with a muscle-wasting condition during the Covid-19 pandemic and access to services, identifying key recommendations to improve services going forward.
Across 2021, there were several meetings in Scotland to discuss COVID 19(in particular, experiences of people living with muscular dystrophy and neuromuscular conditions, latest guidance and vaccine priorities; and developments on access to treatments. These discussions fed directly into our Shine a Light report.
In 2019 and 2020, meetings focused on the orphan medicines pathway, SMA treatment Spinraza with the Principal Pharmaceutical Officer from the Scottish Government, and talks about the shortage of carers for complex care packages, as well as accessibility on public transport and also the lack of availability of hospice provision or respite breaks meaning that carers, including young people, were having to fill gaps in care.
The Cross-Party Group for Muscular Dystrophy in the Senned Cymru/Welsh Parliament
In April 2023, the Cross-Party Groups met to discuss MDUK’s response on the Wales Rare Disease Action Plans and Welsh Neuromuscular Network’s updates on business cases to improve neuromuscular care in Wales. The CPG also heard about the activities of the Neurological and Rare Diseases Implementation Groups and from members of the public on access to inclusive exercise as well as access to diagnosis and specialist support in North Wales. Full minutes of the meeting can be found here:
In November 2022, the Wales group met to discuss the accessibility of public spaces, the cost of living, and changing places toilets.
In July 2022, the group met to discuss access to housing adaptations in Wales, following a debate that took place in the Senedd regarding additional flexibilities for motor neuron disease. The meeting focused on the impact that delays in accessing adaptations have, and the next steps the government have set out to address this. Full minutes of the meeting can be found here:
In November 2021, MDUK launched their report on the impact of COVID-19 on people with a neuromuscular condition in Wales, alongside gaps in neuromuscular services in Wales, and how to address these gaps. In 2021 and 2020, meetings primarily focused on capturing feedback from attendees on the impact of the pandemic on individuals and accessing support and care.
Previous to that, in 2019, discussions centred around raising awareness of muscle wasting conditions with GPs; improving the co-ordination of neuromuscular care and support; and hearing from people who shared their experiences of managing the psychological impact of living with the condition.
Access to specialist care
With our support, cross-party groups in all four countries have been investigating access to specialist neuromuscular care and social care across the UK. There are five reports that make recommendations about the action that is needed:
- to address the significant gaps in the provision of specialist neuromuscular care
- to implement service improvements.
Fast Track – access to specialist treatments
Our Fast Track to treatments campaign presses for faster access to potential treatments for muscle-wasting conditions.
The All Party Parliamentary Group for Muscular Dystrophy’s Access to high cost drugs report was published in September 2013. We have enlisted our parliamentary supporters to highlight recommendations from this report calling for streamlined and innovative processes for assessing new treatments to reduce delays in patients accessing these treatments.
Newborn screening
In April 2014, the All Party Parliamentary Group (APPG) for Muscular Dystrophy launched its report on Newborn screening for Duchenne muscular dystrophy.
We aimed to identify the barriers to a newborn screening programme and how these could be overcome, in the light of emerging treatments for the condition. There is now a focus on securing screening of other conditions including spinal muscular atrophy (SMA).
Screening has a crucial role to play in earlier diagnosis. It would enable children to access emerging treatments without delays. It would also allow families to plan and adapt for caring for a child with the condition.
Any questions?
If you would like any advice about our parliamentary activity or contacting your local MP, MSP, AM or MLA, please contact us on campaigns@musculardystrophyuk.org.