Chamber and committees

Information on the amount of people living with dystonia in each NHS board area is not held centrally by the Scottish Government or Public Health Scotland (PHS).

The Scottish Government has submitted a request through NHS Scotland’s Scottish Primary Care Information Request (SPIRE), which holds information from GP patient records, to better understand prevalence amongst neurological conditions including dystonia. We expect this data to be collected in 2022.

The Scottish Government is committed to ensuring that all people living in Scotland with dystonia are able to access the best possible care and support, and benefit from healthcare services that are safe, effective and put people at the centre of their care.

While the Scottish Government’s role is to set the strategic policy for the NHS in Scotland, NHS Boards and healthcare professionals locally have responsibility for both service delivery and people’s care. NHS Boards are expected to ensure that patients, including those who require care and support for dystonia, have access to a range of professionals to provide the appropriate management of their condition.

Dystonia UK, a leading charity that provides supports for people living with dystonia, is a member of the Neurological Alliance of Scotland (NAoS). The NAoS are key members of our National Advisory Committee for Neurological Conditions which is working to drive improvement in outcomes for people with a range of neurological conditions, including dystonia.

In 2019, we published a Neurological Care and Support – National Framework for Action, with a vision to ensure everyone with a neurological condition, including dystonia, can access the care and support they need to live well, on their own terms.

We are investing £4.5 million of funding to implement the 17 commitments in the framework, supporting innovative practice in neurological care for people with conditions such as dystonia. No applications have been received to date for projects in relation to the direct support and care of people affected by dystonia and we would welcome future applications.

Through Commitment 13 of the Framework, the Scottish Government will support neurological research by promoting the work of the Chief Scientist Office, third sector organisations’ research and Scottish neurological research networks; encouraging opportunities for people with neurological conditions to become involved in research trials; and highlighting the need for further qualitative research on the impact of living with a neurological condition.

The Chief Scientist Office research funding committees are open and applications on the underlying causes, diagnosis, treatment and management of dystonia are welcomed - Response Mode Funding Schemes – Chief Scientist Office (scot.nhs.uk)

The 2022-23 Scottish Budget provides investment of £18 billion for the Health and Social Care Portfolio, delivering on the commitment to pass on frontline health and care Barnett consequentials in full.

The funding associated with the Health and Social Care Levy is estimated to be around £1 billion per annum on average across the UK Spending Review period; however HM Treasury has not specifically quantified this funding within our overall settlement. All frontline Health and Social Care consequentials are being passed on.

The information requested is not held centrally by the Scottish Government, due to the possibility of patient identifiable information.

The information requested relating to how many patients a) contracted and (b) died from fungal infections at the Queen Elizabeth University Hospital is not centrally held by the Scottish Government, due to the possibility of patient identifiable information.

NHS Greater Glasgow and Clyde report that maintenance work requests for wards 4a and 4b were mainly in relation to paint and floor damage. Reactive works requests are general requests direct from the Ward and can include issues such as broken equipment, heating, cooling lights, broken beds, electrics etc.

Planned maintenance activities are also carried out which include checks of Ventilation, Emergency lighting, Fire Alarm, Thermal Mixing Taps, Showers and Fire Doors etc.

The information requested is not held centrally by the Scottish Government, due to the possibility of patient identifiable information.