Access to treatments

For people with muscle wasting or weakening conditions, every day is vital which is why we’re committed to ensuring urgent action is taken so that people are able to access the support and treatments that they want and need. 

This is an encouraging time with many clinical trials in development, and several treatments either available or emerging on the horizon. The experience and insight of people living with health conditions is a crucial part of the treatment appraisal process – which is when a treatment is appraised by the National Institute of Health and Care Excellence (NICE – which covers England, Wales and Northern Ireland) and the Scottish Medicines Consortium (SMC – which covers Scotland).  

Through their appraisal processes, NICE and SMC make recommendations as to whether a treatment should be made available on the NHS. We play a key role in these appraisals, often acting as a formal Patient Expert. We seek to represent our community so are grateful to the many people who share their experiences with us to use in our work in this area. Wherever possible we seek to work in partnership with other charities and patient groups. 

NICE is responsible for evaluating new health technologies (including treatments) for NHS use, considering clinical effectiveness and value for money. A treatment can only be appraised by NICE if it has first been licenced by the Medicines and Healthcare products Regulatory Agency (MHRA) and once the company that makes the treatment has submitted it for appraisal. 

NICE uses the phrase ‘technology appraisal guidance’ but this encompasses medicines; medical devices; diagnostic techniques; surgical procedures; and health promotion activities. Read more information on NICE’s website. 

At the end of each appraisal process NICE publishes guidance that recommends whether a treatment should be made available on the NHS. The appraisal process is broken down into several stages. You can read an overview of these stages on NICE’s website. 

The Scottish Medicines Consortium (SMC) provides advice to NHS Scotland about the value for patients of newly licensed medicines.  

The SMC is made up of lead clinicians, pharmacists, and health economists together with representatives of health boards, the pharmaceutical regulatory body and members of the public.  

The process used by the SMC to assess a treatment is different to the one used by NICE. You can see an overview of the SMC process on their website.