Under the Freedom of Information Act 2000, I would like to request the following information in regard to the treatment of Duchenne muscular dystrophy (DMD) by your organisation:
Does your organisation commission any services for people with DMD?
If no, does your organisation expect to commission services for DMD in the future?
If yes, what services for people with DMD does your organisation commission?
How many people with DMD does your organisation serve?
Does your organisation have any DMD-specific (or muscle-wasting disease-specific) policies or guidance?
Do any of your organisation’s strategies, objectives, plans, performance indicators, audits, inspections, or similar, cite DMD (or any muscle-wasting disease) or use either as a metric?
Is your organisation aware of the work of DMD Care UK (https://dmdcareuk.org/)?
(i.e how many patients with DMD do you have within your area?)
Thank you for your recent request.
Public Health Wales (PHW) do not provide clinical services and manage patients as the Health Boards do.
PHW is the public health service for Wales and as such is an independent NHS Trust. As an organisation we have no jurisdiction over the activities of Health Boards and other NHS Wales organisations. This means we do not routinely have access to the data they produce. The answers below are for PHW only.
Does your organisation commission any services for people with DMD?
No
If no, does your organisation expect to commission services for DMD in the future?
No
How many people with DMD does your organisation serve?
N/A
Does your organisation have any DMD-specific (or muscle-wasting disease-specific) policies or guidance?
N/A
Do any of your organisation’s strategies, objectives, plans, performance indicators, audits, inspections, or similar, cite DMD (or any muscle-wasting disease) or use either as a metric?
No, but the establishment of an Adult Rare Diseases surveillance registry is captured within the organisations’ Integrated Medium Term Plan (IMTP).
Is your organisation aware of the work of DMD Care UK (https://dmdcareuk.org/)?
We are aware of the third sector regarding rare diseases. However, we would not usually be aware of the specific work of each third sector organisation.
The Health Boards may be able to provide the information you are requesting. I have provided contact details for them below, you would need to contact them individually for the information they hold.
Aneurin Bevan University Health Board
http://www.wales.nhs.uk/sitesplus/866/page/39187
Betsi Cadwaladr University Health Board
http://www.wales.nhs.uk/sitesplus/861/page/39134
Cardiff and Vale University Health Board
http://www.cardiffandvaleuhb.wales.nhs.uk/freedom-of-information-new
Cwm Taf Morgannwg University Health Board
https://cwmtafmorgannwg.wales/foi/
Swansea Bay University Health Board
https://sbuhb.nhs.wales/about-us1/foia/
Hywel Dda University Health Board
http://www.wales.nhs.uk/sitesplus/862/page/52085
Powys Teaching Health Board
http://www.powysthb.wales.nhs.uk/freedom-of-information
If you are unhappy with the service you have received in relation to your request and wish to make a complaint or request a review of the decision, you should write to the Corporate Complaints Manager, Public Health Wales NHS Trust, 3, Number 2, Capital Quarter, Tyndall Street, Cardiff, CF10 4BZ.
If you are not content with the outcome of your complaint or review, you may apply directly to the Information Commissioner for a decision. Generally, the ICO cannot make a decision unless you have exhausted the complaints procedure provided by the Trust. The Information Commissioner can be contacted at:
Information Commissioner for Wales
2nd Floor
Churchill House
Churchill Way
Cardiff
CF10 2HH
Telephone: 029 2067 8400
Email: wales@ico.org.uk