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Responses > Spinal Muscular Atrophy (SMA) Treatment

Freedom of Information request Spinal Muscular Atrophy (SMA) Treatment

Response published: 24 November 2025
Clinical Activity Data | Health

FOI Request

I would be grateful if you could please answer the following questions with regards to treatment of spinal muscular atrophy: 1. Within your Trust/ Health Board, where are patients (aged 2yrs +) with a diagnosis of Spinal Muscular Atrophy referred to for treatment? 2. How many patients with Spinal Muscular Atrophy have been referred in: A. The last 12 months? (or the latest 12 months of data you have available) B. The last 5 years? Could you please split this out into SMA type if possible ( Type 0, 1, 2, 3, 4) – (see attached ICD-10 codes) 3. If your Trust/ Health Board receives referrals, where are these referrals made from? 4. How many patients return to local care for continued treatment once referred to a specialist centre? 5. If you have a treating centre for Spinal Muscular Atrophy in your trust, what is the average length of stay (or annual bed days) of patients being treated? If you are unable to answer all of these questions, please provide answers to those that are possible to answer. Thank you for taking the time to look into this request.

FOI Response

Freedom of Information Request – Ref: FOI 312-2025

Thank you for your recent Freedom of Information request. Please find our response below.

You asked:

1. Within your Trust/ Health Board, where are patients (aged 2yrs +) with a diagnosis of Spinal Muscular Atrophy referred to for treatment?

2. How many patients with Spinal Muscular Atrophy have been referred in:

A. The last 12 months? (or the latest 12 months of data you have available)
B. The last 5 years?

Could you please split this out into SMA type if possible ( Type 0, 1, 2, 3, 4) – (see attached ICD-10 codes)

3. If your Trust/ Health Board receives referrals, where are these referrals made from?

4. How many patients return to local care for continued treatment once referred to a specialist centre?

5. If you have a treating centre for Spinal Muscular Atrophy in your trust, what is the average length of stay (or annual bed days) of patients being treated?

Our response:

The Trust does not provide the service mentioned in your request. Please re-direct your request to Gloucestershire Hospitals NHS Foundation Trust at ghn-tr.foi@nhs.net.

Next steps:

Should you have any queries in relation to our response, please do not hesitate to contact us. If you are unhappy with the response you have received in relation to your request and wish to ask us to review our response, you should write to:

Louise Moss
Head of Legal Services / Associate Director of Corporate Governance
c/o Gloucestershire Health and Care NHS Foundation Trust
Edward Jenner Court
1010 Pioneer Avenue
Gloucester Business Park
Brockworth, GL3 4AW
E-mail: louise.moss@ghc.nhs.uk

If you are not content with the outcome of any review, you may apply directly to the Information Commissioner’s Office (ICO) for further advice/guidance. Generally, the ICO will not consider your case unless you have exhausted your enquiries with the Trust which should include considering the use of the Trust’s formal complaints procedure. The ICO can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.