Our current campaigns

In July 2021, we published our UK-wide Shining a light: The impact of COVID-19 and the future of care for people with a muscle-wasting condition report. It set out key recommendations to improve neuromuscular care and ensure services are fit for the future across the country.

We’re calling for both short and long-term recovery priorities from the UK government to improve the lives of people living with muscle wasting conditions. These include:

• Access to a specialist multidisciplinary team with input from a core team of specialist consultants, physiotherapists, mental health professionals and neuromuscular care advisors across the UK.
• The establishment of NHS-managed regional neuromuscular clinical networks across the UK to help raise standards and benchmark services.
• The provision of neuromuscular outreach clinics and improved connection with community services.
• Access to a psychologist or mental health specialist with expertise in working with people with a neuromuscular condition.
• Faster access to new treatments and therapies, from NICE assessment to patient roll out.

We’ll be pushing for these changes to ensure that services recover from the pandemic in the short-term, as well as help strengthen services in the long-term.

Shining a Light in Wales

Following our UK-wide report, in November 2021 we published our Wales ‘Shining a Light’ report.

Within the report, we’re calling for:

• The allocation of sustainable and consistent specialised funding for neuromuscular services to accurately reflect the care needs of the neuromuscular population. This includes more dedicated neuromuscular consultants, physiotherapists, nurse specialists, psychologist, and care advisor posts.
• NHS funding to support the Wales Neuromuscular Network to appoint a network manager to help identify local service gaps and implement more timely solutions.
• Access to specialist psychology and mental health services for people with a neuromuscular condition.
• Timely and local access to new treatments and therapies for people across Wales.
• An increase in trained, neuromuscular staff who can work with community services and bridge the gap between specialist neuromuscular teams and their surrounding areas.

We’re working closely with key stakeholders across the Wales Neuromuscular Network, Welsh Government, NHS Wales, and the Health Boards to drive forward these recommendations.

Shining a Light in Scotland

Building on our UK-wide and Wales report, in January 2022 we published our Scotland ‘Shine a Light’ report.

Within the report, we’re calling for:

• More neuromuscular nurse specialist roles to ensure that every neuromuscular team has at least one of these vital roles.
• Increased investment in the national neuromuscular teams, with more neuromuscular consultants, physiotherapists, nurse specialists, and psychologists.
• The appointment of a full-time network manager, with administration support, for the Scotland Muscle Network.
• Reduced waiting lists and to address the growing backlog of new and follow-up appointments, by implementing virtual outreach clinics in local areas.
• To strengthen the administrative support for data collection and improved clinic co-ordination.
• Flexibility into the yearly growth of block contracts to accurately reflect the growing neuromuscular population and the resulting increase in complex care needs.

We’re working closely with key Scottish healthcare stakeholders to drive forward these recommendations to ensure every person with a neuromuscular condition has access to the services they need.

Shining a Light in Northern Ireland

We published our Northern Ireland ‘Shine a Light’ report in February 2022.

Within the report, we’re calling for:

• Sustainable and consistent funding for neuromuscular services to accurately reflect the care needs of the neuromuscular population. This includes more neuromuscular consultants, physiotherapists, nurse specialists, psychologists, speech therapists, occupational therapists, and care advisor posts.
• More trained neuromuscular staff who can work with community services and bridge the gap between specialist neuromuscular teams and their surrounding areas.
• Improved access to specialist psychology and mental health services for people with muscle wasting conditions.
• Reduced waiting lists and to address the growing backlog of new and follow-up appointments by implementing virtual outreach clinics in local areas.
• The establishment of a Northern Ireland NHS-managed regional neuromuscular clinical network and to re-appoint neuromuscular leads to connect government and the network.
• The provision of specific clinic space where people with muscle wasting conditions can access an appointment when they need to.

We’re working closely with the leading neuromuscular specialist clinicians, the Belfast Trust leads, and the Department of Health to drive forward these recommendations and improve the services across the country.

People affected by muscle wasting conditions should receive the vital care and support they need in emergency situations.

A key part of achieving this is ensuring that people with muscle wasting conditions at a high-risk of needing emergency care can have their details added to ambulance service ‘flagging’ systems. This means that paramedics and first responders are alerted that the person they are treating has a neuromuscular condition.

We worked with the London Ambulance Trust to develop the ‘Coordinate my Care’ technology to include families and individuals with a muscle wasting condition.  And through our Ambulance Action campaign, we are working to ensure that people with muscle wasting conditions have access to a similar, specialist ‘flagging’ system.

Following our campaign, the West Midlands and Northern Ireland have started adding people to their flagging systems for the first time.

Our campaign centres around:

• Working with people with muscle wasting conditions, health professionals and ambulance services to ensure that no matter where someone lives in the UK, they have access to a similar, specialist ‘flagging’ system.
• Ensuring clinicians are aware of Ambulance flagging systems where they are available and to support paramedics’ knowledge of muscle wasting conditions, allowing them to give appropriate treatment.
• Working in partnership with paramedics to better support the emergency care of people with muscle wasting conditions.
• Creating and distributing condition-specific alert cards that advise health professionals on the key do’s and don’ts when caring for someone with a muscle wasting condition.
• Working closely with ambulance services via our Services Development Committee, chaired by Baroness Celia Thomas of Winchester

A key focus of our work has been making sure that we level the playing field in neuromuscular care so that, no matter where you live in the UK, you have access to the right care at the right time.

Currently there is a postcode lottery with specialised services, which is why we work across the country to increase capacity in the areas which are falling behind others.

Since July 2013, our Health Service Development team (formerly Bridging the Gap) has helped secure over 100 new roles – with over £6 million of new NHS investment – in neuromuscular multidisciplinary teams.

Thanks to the tireless campaigning of our supporters, these new roles help to deliver better support to the 110,000 people in the UK living with muscle wasting conditions

One of the key ways we achieve these new roles is through our regional neuromuscular forums and networks which we aim to see turned into NHS funded neuromuscular clinical networks. Made up of neuromuscular specialist health professionals, family representatives, and NHS commissioners, the networks help to drive forward neuromuscular service improvements.

Our campaign centres around:

• Working with families, individuals, and specialist teams to identify where there are gaps in care in different regions.
• Working with commissioners, both in the NHS and in Clinical Commissioning Groups, to identify the appropriate way of funding specialist roles.
• Providing commissioners with examples of why these roles in these areas are so important.
• Writing business cases with neuromuscular specialists and commissioners to create a formalised proposal for the new role we are campaigning for.

In February 2015 we published Right to Breathe, a report which found that a third of families are being repeatedly turned down for respiratory equipment by local NHS commissioners. Despite respiratory infections being a primary factor in deaths for some types of muscle wasting condition, adults and children across the country routinely struggle to access the equipment they need at the time that they need it.

Costing in the region of £5,000 – equivalent to a 48-hours stay in an intensive care unit – cough assist machines are considered vital by respiratory specialists and are routinely used during hospital appointments. However, we know that some families have had to go online and pay themselves for second-hand equipment because their local commissioners will not provide what they need.

We have worked with the Walsall Clinical Commissioning Group (CCG) to create a cough assist commissioning policy which we have recommended all CCGs in the country adopt. We know that some CCGs now have a policy that makes clear that their organisation will fund and deliver cough assist machines to patients in their area, but we are also aware that many more still don’t have a formalised policy.

Our campaign centres around:

• Ensuring that all CCGs have an agreed commissioning policy in place for the commissioning of cough assist machines.
• Ensuring that all individuals with a neuromuscular condition and respiratory complications have access to a specialist respiratory team.
• Ensuring that all individuals who have an NHS provided cough assist machine have an agreed aftercare plan which clearly states who is responsible for the replacement of machine parts if required.

Being diagnosed with a muscle wasting condition means adjusting to a new and unexpected reality. Muscle wasting conditions can affect every aspect of life and many people tell us they feel isolated because of their condition. Others tell us of their anxiety or depression as they adjust to their diagnosis. The impact goes beyond those who have a muscle wasting condition; families and carers also live with its effects.

We want to see better support for people’s psychological needs from the point of diagnosis and at every stage thereafter.

In 2018 the All Party Parliamentary Group (APPG) for Muscular Dystrophy delivered a report into Access to psychological support for people with neuromuscular conditions. People shared their experiences of the emotional impact of living with muscle wasting conditions which provided evidence.

Recommendations from the APPG include:

• Better recognition of the psychological impact of muscle wasting conditions on patients and their families.
• Psychological support from the point of diagnosis onwards and at significant life milestones.
• Better integration and co-ordination within specialist neuromuscular multi-disciplinary teams.
• Greater use of face-to-face digital technology such as Skype, and within the local community, as ways of providing appropriate psychological support.

In 2021 we published Shining a Light: the impact of covid 19 and the future of care for people with a muscle-wasting condition. It recommended that people living with a muscle wasting condition should be able to access a psychologist or mental health specialist with expertise in working with individuals with a neuromuscular condition.

As part of our Mental Health Matters campaign, we’re pressing for change and taking forward the recommendations from the APPG for Muscular Dystrophy and the Shining a Light report, to encourage improved access to mental health services, provided by professionals with an understanding of muscle wasting conditions.

We’re working to:

• Upskill specialist neuromuscular healthcare professionals to provide them with the tools to better support people living with a muscle wasting condition with their mental health.
• Identify appropriate available mental health support to improve signposting and accessing help when needed.
• Ensure that any mental health support offered is appropriately tailored to individual needs.

Our ongoing Focus on Physio campaign aims to ensure that all individuals and families living with muscle wasting conditions in the UK have access to high quality physiotherapy both at a specialist and community level within the NHS.

In 2016 we launched our Overstretched report which found that 60 percent of people with muscle wasting conditions are unable to access appropriate physiotherapy to support them with their condition.

Our campaign centres around:

• A specialist physiotherapist in every specialist neuromuscular service.
• NHS England, CCGs and Hospital Trusts working together to ensure that patients with muscle wasting conditions can have access to physiotherapy when they need it, at a clinically appropriate time to allow them maximum benefit.
• Increasing the provision of community physiotherapy through CCGs. Community physiotherapists – linking with a specialist physiotherapist at a specialist centre – can play a crucial role in more regular management of patients at a community level.
• Increasing the provision of research physiotherapists to lead on clinical trials through Hospital Trusts to work alongside the National Institute of Health Research.

People living with a muscle wasting condition require access to a wide range of healthcare services from specialist tertiary services to see neuromuscular specialists, community services to access physiotherapists, speech and language specialists and GPs, to social services for housing and employment support.

Since July 2022, most Neuromuscular services have been commissioned (or funded) by Integrated Care Systems (ICSs). With this change, we hope that people living with a muscle wasting condition will be able to access better integrated care given the wide variety of services needed to bring positive progress in the management of muscle wasting conditions.

Given the complexity of muscle wasting conditions, we are working closely with our Neuromuscular Networks to engage with ICS leads to support best-practice cases for people living with a muscle wasting condition in their local area.

To provide commissioners with an outline on what these changes will mean for people with muscle wasting conditions, in September 2022, we published our report ‘The new integrated care model and muscle-wasting conditions: How Integrated Care Systems can implement best-practice’ to support those involved in the commissioning of services such as Integrated Care System (ICS) commissioners, Integrated Care Board (ICB) members, primary care networks, and NHS England (NHSE).

Further, in October 2022, we published our report ‘The new integrated care model and muscle-wasting conditions: Supporting community healthcare professionals to care for people living with muscle-wasting conditions’ to outline how we as a charity can support ICSs, community and specialist healthcare professionals to provide best-practice neuromuscular care.

The cost of living crisis is impacting everyone, but especially those with lifelong and life-limiting diseases such as muscle wasting conditions.

People living with a muscle wasting condition already incur a large amount of additional costs to ensure they live well for as long as possible. This could include needing more heating to prevent the cold from stiffening their muscles, to the housing adaptations needed to live as independently as possible. Additionally, the financial burden of attending a vast array of specialist appointments, charging specialist equipment and electrical wheelchairs, and paying for private therapeutic treatments that are unavailable through the NHS can’t be underestimated.

Families have told us about the increases they are seeing on their utility bills, groceries, and petrol to travel to appointments. With the costs only going to continue to rise, they are now struggling more than ever, and it is imperative that they get the support they need.

In October 2022, we published The impact of rising costs on people living with a muscle-wasting condition report setting out key recommendations to improve the support available to help alleviate the financial burden people with a muscle wasting condition.

Our campaign centres around:

• Implementing a hospital travel card scheme to provide subsidised, accessible travel to people living with a long-term condition, including people living with a muscle wasting condition.
• Ending VAT on energy bills whilst prices are increasing for people living with a long-term condition, including people with a muscle wasting condition, to make these costs more manageable.

People living with a muscle wasting condition require timely diagnosis to access a wide range of health and social care services. Over recent years, the advancement of access to treatments and other health support has increased the importance of this.

In October 2022, the All-Party Parliamentary Groups on Muscular Dystrophy, chaired by Mary Glindon MP, launched an inquiry into newborn screening for rare conditions and the evidence requirements for acceptance onto the newborn screening programme, with support from Muscular Dystrophy UK and the APPG on Rare Genetic and Undiagnosed Conditions, which is chaired by Liz Twist MP.

The focus of the inquiry was to gain a better understanding of the value of newborn screening to individuals with rare conditions and what an appropriate level of evidence should be to support the appropriate expansion of the list of conditions screened for in the programme. Although the inquiry took an interest in rare conditions in general, there was a specific focus on Spinal Muscular Atrophy, given the imminent review of this condition by the UK National Screening Committee (UK NSC).

The inquiry heard powerful evidence, views, and experiences from a variety of clinical experts, patient organisations, other stakeholders, as well as parents and guardians of children living with rare conditions. The process ran until January 2023.

To drive effective changes forward, the APPG published their inquiry report, Newborn Screening for Rare Diseases, in May 2023. The report categorises robust recommendations into three overarching themes:

• The approach taken by UK NSC to assessing conditions for newborn screening needs to be expediated. Whilst it should be robust, there are ways in which it could be more pragmatic.
• The criteria and evidence requirements for a condition to be accepted for newborn screening need to be reviewed so that they are fit for purpose for rare diseases.
• A clear and transparent approach focused on stakeholder engagement is key.