Chamber and committees

(a) NHS boards are responsible for the design, delivery and management of services to their population. The support they provide will differ depending on their population’s needs.

(b) Decisions concerning the diagnosis, care and treatment of patients are individual. They involve professional judgement of the patient’s clinician, together with meaningful conversations with the patient that allows them to share decisions relating to their care and is based on understandable evidence about effect. The use of idebenone (Raxone®) to manage Leber’s Hereditary Optic Neuropathy (LHON) is highly specialist for a very specific condition, and this medicine is licensed only for use in this way.

The Scottish Government is clear that patient safety is a priority, therefore all medicines must be fully tested and researched before they can be licensed and made available on the NHS and this is the same for idenenone (Raxone®). This is in line with the license granted by the European Medicines Agency (EMA) for the use of idenenone (Raxone®) under exceptional circumstances for the treatment of LHON.

NHS Lothian’s performance of 83.8% is below what we would expect and while the median wait for treatment was 44 days we must continue to do more to ensure timely access to diagnostics and treatment for those patients who did not receive their treatment within 62 days.

Challenges remain to the 62-day cancer access pathway with known capacity pressures in NHS Lothian particularly for the colorectal and urological cancer pathways. The Scottish Government continues to support improved performance across NHS Scotland and are actively engaging NHS Boards where there are challenges to sustained delivery against the 62-day standard. This is backed by additional funding of £698k to NHS Lothian in 2016-17. NHS Boards are working through improvement plans with a clear focus to improve performance by the end of March 2017.

I refer the member to the answer to question S5W-01881 on 7 September 2016. All answers to written parliamentary questions are available on the Parliament’s website, the search facility for which can be found at http://www.parliament.scot/parliamentarybusiness/28877.aspx.

The Scottish Government expects all patients to have access to treatment which is appropriate to individual clinical needs. The Scottish Government is committed to improving services for people living with chronic pain. This is underlined by the fact that Scotland is the only nation in the UK to routinely collect and publish waiting times data in this area.

The Scottish Government does not agree with the interpretation of waiting times data, as reported in The Herald on 6 March 2017. Accurate waiting times data is published by NHS Information Services Division and can be accessed on their website: http://www.isdscotland.org/Health-Topics/Waiting-Times/Chronic-Pain/. The Associate Director (Data Management & Strategic Development) / Head of Profession for Statistics, ISD Scotland has written to The Herald expressing concerns re the inaccurate calculation of these data. A response is awaited. For clarity, there are two data items collected for new patients – waiting times for a first appointment/assessment at the pain clinic/service and waiting times for a first pain psychology services appointment.

Information on return appointments is not collected centrally. Each patient may require a different timescale for follow up appointments, as clinically determined. We do, however, expect patients to be seen within the most appropriate timescale for their condition following a clinical assessment.

The most recent waiting times data published by NHS Information Services Division on 14 March 2017, showed that the percentage of patients receiving treatment at a pain clinic within 18 weeks has risen from 60.4% to 64.5%. This information can be accessed at the following link: http://www.isdscotland.org/Health-Topics/Waiting-Times/Chronic-Pain/.

It is the role of Scottish Government to to provide policies, frameworks and resources to NHS Boards to support them to deliver services that meet the needs of their local populations. Within this context, the actual provision of healthcare services is the responsibility of local Boards, taking into account national guidance, local service needs and priorities for investment.

We continue to support NHS Boards to ensure patients have access to the care they need via, for example, the work of the Ministerial Steering Group and the planned National Advisory Committee on Chronic Pain whose remit will include guiding the improvement of chronic pain management at all levels of health and social care and to advise the Scottish Government on such chronic pain work and outcomes, to inform effective policy development.

I refer the member to the answer to question S5W-07758 on 30 March 2017. All answers to written parliamentary questions are available on the Parliament’s website, the search facility for which can be found at http://www.parliament.scot/parliamentarybusiness/28877.aspx.

The planned National Advisory Committee on Chronic pain will be expected to guide the improvement of chronic pain management at all levels across health and social care. The Committee will, for example, work on the development of a dataset to allow for effective oversight of chronic pain services, including the potential development of Quality Performance Indicators.

The Scottish Government estimate that there are 44,000 young carers aged between 4-17 in Scotland and the 2011 census showed that there are 6,300 students who identify as carers aged between 18-24. This does not distinguish between part time and full time study.

The Scottish Government is working to support young carers to continue with their education in school, college or in university and not to lose out due to the demands of their caring role. We funded the College Development Network to design and deliver an online resource for learners with caring responsibilities. And while the Scottish Government does not collect annual data on the number of young carers in part time study an Action Planning Tool is available to help colleges improve identification and meet the needs of student carers.

The Scottish Government expects all Health Boards to ensure appropriate referral and testing for Lynch syndrome occurs for all patients diagnosed with colorectal cancer before the age of 60.