Question reference: S4W-07133
- Asked by: Paul Wheelhouse, MSP for South Scotland, Scottish National Party
- Date lodged: 10 May 2012
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Current status: Answered by Nicola Sturgeon on 21 May 2012
Question
To ask the Scottish Government what steps it (a) is taking, (b) could take, and (c) will take to raise awareness of Dystonia amongst public sector agencies and wider society.
Answer
NHSScotland has invested in online resources such as the NHS Inform website, which provides clear and accessible information on the causes, symptoms and diagnosis of dystonia. This can be accessed at the following link:
http://www.nhsinform.co.uk/Health-Library/Articles/D/Dystonia/introduction.
People living with dystonia also have an important role in raising awareness of their condition and can often be the wider public’s first source of information. This role is being strengthened through the Neurological Alliance of Scotland’s “Neurological Voices” programme which prepares adults living with neurological conditions and their carers to get involved in developing local healthcare services. To date the Scottish Government has invested over £100,000 in the Neurological Voices programme, to help raise awareness and ensure that the patient voice is heard.
In 2010, we provided the Dystonia Society with a Section 16B grant of £46,500 over three years to assist with disseminating the Society’s self management course which supports people living with dystonia to self manage the condition and play a more active role in discussions with health and social care professionals about their care.
To help raise awareness amongst healthcare professionals the Dystonia Society has launched an online training module for GPs through the British Medical Journal’s learning programme, with more than 3,000 healthcare professionals accessing the module in the first year. In addition, a “Guide to Good Practice for healthcare professionals” was launched in October of last year. The guide was developed with the help of leading Neurologists, Dystonia Nurses and therapists and is being issued to treatment centres throughout Scotland.
We also have a good working relationship with the Neurological Alliance of Scotland, of which the Dystonia Society is a member, which aims to raise awareness of all neurological conditions and which has been a key partner in Healthcare Improvement Scotland’s Neurological Standards Improvement Programme.