Chamber and committees

The Young Patients Family Fund provides valuable financial support to eligible visitors of inpatients up to the age of 18. There are currently no plans to extend the age range.

Those aged between 18 – 25 years old continue to have access to the Patient Travel Expenses Scheme or the Highlands and Islands Travel Scheme, both of which provide eligible claimants with support to meet travel costs associated with outpatient appointments.

In its first year of operation, a total of £2,056,179 was paid out to Scotland’s 14 territorial Health Boards for the Young Patients Family Fund in 2021-22.

Scottish Government does not yet hold data on how many individual people have benefitted so far.

I refer the member to the answer to PQ S6W-08047 on 10 May 2022. All answers to written Parliamentary Questions are available on the Parliament's website, the search facility for which can be found at https://www.parliament.scot/chamber-and-committees/written-questions-and-answers

Scottish Government does not yet hold this data for 2021-22. We have asked for this information as part of routine monitoring of implementation of the Young Patient’s Family Fund, from Health Boards.

Any decision on whether or not to introduce screening for Spinal Muscular Atrophy (SMA) in Scotland will be guided by the recommendations of the UK National Screening Committee (UK NSC), an independent expert advisory group which advises Ministers and the NHS in all four nations of the United Kingdom on screening policy. The UK NSC last reviewed SMA in 2018 and did not recommend screening for this condition.

The UK NSC is expected to review SMA screening later this year, taking into consideration the latest evidence since the previous recommendation in 2018. Should the UK NSC recommend screening for this condition, the Scottish Screening Committee, in consultation with medical experts in this field, will advise Scottish Ministers on the most appropriate future course of action for Scotland.

Scottish Government officials have been involved in initial discussions with academics and clinicians about the potential for a Scottish research study of newborn screening for Spinal Muscular Atrophy (SMA), and are awaiting a fully developed proposal. Any decision thereafter to run an SMA pilot will depend on the expert advice of the Scottish Screening Committee as well as the organisations that oversee implementation of any changes to the newborn screening programme.

Funding under the Young Patients Family Fund is available to eligible visitors of all young inpatients. Requirement for in-patient care can vary by condition and type of treatment, and some patients may have multiple conditions or treatments over time. For these reasons we do not collect data on individual conditions.

Salus and Working Health Services Scotland (WHSS) provide return to work and occupational health services for people who have health conditions or injuries that are impacting on their work, including long COVID. These services are adapting to meet the additional needs required of them due to the pandemic. Currently there are no plans to develop an occupational health return-to-work support service for people with long COVID.

NHS inform provides people living with long COVID with clear and accessible guidance on managing their symptoms. It includes specific advice on navigating a return to work and signposts to information developed by the Society of Occupational Medicine and the Advisory, Conciliation and Arbitration Service.

The Minister for Equalities and Older People has agreed to meet with the Chief Executive of Hourglass Scotland in the coming weeks. Officials are arranging a suitable date and time.

The Scottish Government is aware of a growing number of studies linking autistic people (both diagnosed and undiagnosed) to increased chance of suffering from self-harm and suicidality, including the academic report Autistic traits in adults who have attempted suicide published by Richards, G., Kenny, R., Griffiths, S. et al. Molecular Autism and the academic report Links between self-injury and suicidality in autism published by Moseley et al. Molecular Autism in 2020.

People experiencing suicidality often face a complex set of personal issues and circumstances. As such, services must be person-centred and trauma-informed to ensure they provide compassionate and effective support. It is important services recognise and respond to the mental health challenges autistic people face in their day-to-day lives. In terms of learning resources, NHS Education for Scotland (NES) have developed Knowledge and Skills Frameworks for the Scottish Workforce on Mental Health Improvement, Self-Harm and Suicide Prevention, and Children and Young People’s Mental Health and Wellbeing; these learning frameworks include resources and guidance on providing mental health support for autistic people. In addition, as part of a National Trauma Training Programme funded by the Scottish Government, NES have developed a knowledge and skills framework and training resources to support the Scottish workforce to better understand and respond to trauma.

The Scottish Government set up the National Suicide Prevention Leadership Group (NSPLG) to oversee the delivery of the Suicide Prevention Action Plan ‘Every Life Matters’, published in 2018. The Plan continues to deliver a wide range of actions, including: campaigns to reduce stigma and promote suicide awareness (with a focus on reaching groups with a higher risk of suicide), improving suicide prevention skills of the workforce; ensuring effective, compassionate support to anyone in crisis, and supporting local suicide prevention planning.

In developing the new suicide prevention strategy and action plan, which will publish in September, the Scottish Government and COSLA are focussed on how to further develop effective approaches to reach and support groups at heightened risk of suicide, including autistic people. This will include drawing on research, lived experience insight, and examples of good practice.

The Scottish Government published our Learning/Intellectual Disabilities and Autism Towards Transformation Plan in March 2021. The plan looks at the actions needed to shape supports, services and attitudes to ensure that the human rights of autistic people and people with learning/intellectual disabilities are respected and protected and that they are empowered to live their lives, the same as everyone else. Vital to the successful implementation of the plan are actions to improve diagnostic and post-diagnostic services, to improve waiting times and to provide the support newly diagnosed autistic people require.

We are also carrying out new leadership and engagement work where lived experience is at the heart of the whole process. This process looks to empower autistic people and people with learning disabilities to be the leaders in transforming Scotland, starting by looking at what is needed to improve mental health for autistic people and people with learning disabilities.