Living with Multiple Sclerosis in Devon and Torbay

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Executive Summary

Over the course of 2023 – 2024, accounts reported via our online and telephone ‘Have your say’ portal from people living with Multiple Sclerosis described patients experiencing difficulties with various aspects of their care. Complaints centred on the availability of care, communication issues, medication access, appointment scheduling, and unresolved grievances.

It became clear that the everyday issues faced by these patients deserved closer examination with an engagement insight concentrating on Devon and Torbay, comprising both face-to-face focus group work and an online survey.

What we concluded from examining the results of this research 

There are inconsistences in care for many people living with MS, notably in:

• obtaining a diagnosis
• waiting for treatment
• ongoing care
• communication with clinicians.

We therefore recommend:

1. Efforts should focus on standardising diagnostic processes for MS, including setting targets from symptom onset to diagnosis.
2. Research is needed on how diagnostic delays impact patients emotionally and physically.
3. A 12-week treatment initiation goal post-diagnosis, as advised by the National Neurosciences Advisory Group, should become a benchmark.
4. Further investigation is warranted into apparent regional disparities in MS care quality.
5. Annual comprehensive patient reviews, as recommended by the National Institute for Health and Care Excellence (NICE), should be universally adopted, with advocacy groups promoting patients’ rights to request them.