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SMA Health Inequality Survey

1 September 2023

We’ve built a strong partnership with Spinal Muscular Atrophy UK over recent years, collaborating to secure access to SMA treatments and working together as co-secretariat of the UK SMA Newborn Screening Alliance. Our latest piece of joint work sees us coming together to work with Roche Pharmaceuticals on a project exploring health inequalities faced by people affected by SMA in England. Please note, Roche Pharmaceuticals have funded this project through an independent agency and are partnering with SMA UK and MDUK to capture this data. Roche has no access to this data but have had editorial input into the questions in the survey.

Reducing inequalities

Tackling health inequalities is a long-standing aim of both the UK Government and the NHS. Key strategies like the NHS Long Term Plan in 2019 and last year’s UK Rare Disease Framework and accompanying England Rare Diseases Action Plan emphasised the importance of addressing health inequalities in order to secure better health outcomes.

What we know about inequalities faced by people affected by SMA

The way in which the wide range of health services used by people affected by spinal muscular atrophy (SMA) are commissioned and provided in England is changing. Integrated Care Systems (ICS) are being introduced, which will be responsible for overseeing the provision of a range of these services over specific local areas. A small number of services will be provided nationally by NHS England.

In the past, people affected by SMA can receive different levels of care and support depending on where they live in the country. They may also have to access different appointments in more than one part of the country, particularly if they are receiving one of the three treatments that are now available for SMA. But equitable time to diagnosis, access to healthcare services and home support are all essential to the best possible quality of life. With ICSs now up and running, there is opportunity to tackle this regional variation.

Hearing from the SMA community

Despite how important it is, data on the extent and impact of health inequalities in SMA is not always understood. That’s why we’re coming together with Spinal Muscular Atrophy UK on a project funded by Roche to help shed light on regional inequalities.

We want to hear from you, if you have SMA or you are a carer of someone with SMA about your experience around areas such as distance travelled to receive care, time taken off work to travel for appointments, the cost of taking time off work, travel costs and what type of healthcare services are available to you locally.

Take part

To help us understand more about the health inequalities faced by people affected by SMA, please take this survey at The survey should take around five minutes to complete and is available until 18 September 2023.

What happens next

Once the survey is completed, the data gathered will be analysed and used to produce a ‘heatmap’ showing the regional variation of care by the third party agency but funded by Roche. They will also develop a set of recommendations for how the inequalities uncovered can be addressed. The heatmap and the recommendations will be used by us and Roche to engage relevant stakeholders including parliamentarians, government, and the NHS to increase awareness of and address health inequalities in SMA.

Join the Muscular Dystrophy UK community

Share your experience and find advice from others with similar conditions.