Seòmar agus comataidhean

I have Ministerial portfolio responsibility for access to new medicines in Scotland. Accordingly, as you know, I met with you on 6 December 2023 together with representatives of Scottish cystic fibrosis (CF) families to listen to their concerns directly.

In addition, the Chief Pharmaceutical Officer (CPO) engages with representatives of Quest for a Cure, a patient group who represent Scottish CF families, and the Cystic Fibrosis Trust.

The Scottish Government uses a range of measures and sources to consider and report on the impact of the Care Experienced Children and Young People Fund.

Nationally published data, such as the annual Educational Outcomes for Looked after Children is used to consider the impact of this fund. It is encouraging that the latest statistics show an improving position for care experienced children and young people. Whilst real progress has been made, there remains a sizeable gap between the educational outcomes of care experienced children and young people and all pupils. It’s within that context that Scottish Government officials are currently working with local government to develop a long-term approach to improving these outcomes in response to the Promise.

The impact of the Care Experienced Children and Young People Fund is also considered as part of the Evaluation Strategy for the Attainment Scotland Fund 2022 – 2026 . The first annual evaluation plan for 2022-23 , published in February 2023 and, most recently, the SAC Leads Survey Report published 22 September 2023. Evidence from the latter of those shows the Care Experienced Children and Young People Fund is viewed to have supported strategic decision-making to improve attainment or outcomes for care experienced children and young people within respondent local authorities. Dedicated postholders such as Virtual Headteachers were also highlighted for their positive contribution towards joint working and capacity building.

Existing local authority Education Standards and Quality reports (or local equivalent reports) are also used to report on the progress being made with the support of all Attainment Scotland Funding, including the Care Experienced Children and Young People Funding. Within these reports each local authority presents a clear narrative on the extent to which this funding has influenced and supported local approaches to making progress towards identified stretch aims and achieving the mission of the Scottish Attainment Challenge. Many local authorities have also set specific targets for care experienced children and young people in their stretch aims and these are published as part of the aggregated measures .

The National Improvement Framework and Improvement Plan is designed to help us deliver the twin aims of excellence and equity; galvanising efforts and aligning our collective improvement activities across all partners in the education system to address our key priorities. At national level, this Improvement Plan summarises the key evidence and identifies both ongoing and new improvement activity that we will be taking forward or supporting at national level. These plans also play a role in measuring ongoing activity and the impact of this fund.

I refer the member to the answer to question S6W-23384 on 11 December 2023. 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.

My officials engage with the UK Government on a range of medicines-related matters, including the availability of medicines, and keep me updated as required.

I refer the member to the answer to question S6W-22774 on 21 November 2023. 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.

I welcome the Medicines and Healthcare products Regulatory Agency’s (MHRA’s) recent extension to the licence for Kaftrio ® and Kalydeco ® to include children aged two to five years old which will help address the unmet needs of younger children with cystic fibrosis in Scotland. I can also confirm that, while the National Institute for Health and Care Excellence (NICE) multiple technology appraisal (MTA) is ongoing, all existing and new patients in Scotland who are on, or who are started on, a CF medicine, including Kaftrio ® , will continue to have access to that CF medicine after NICE and the SMC issue their final recommendations. This will be irrespective of the outcome of the appraisal and will cover any need to subsequently switch to a different CF medicine.

As part of work being undertaken to develop the new Palliative Care Strategy, we are gathering and analysing evidence to tell us what actions should be taken to achieve the aim of ensuring that everyone in Scotland receives well-coordinated, timely and high-quality palliative care, care around death, and bereavement support based on their needs and preferences.

We have set up a number of working groups, bringing together stakeholders with expertise in priority areas for action, and these groups are developing recommended actions for inclusion in the strategy for discussion with the Strategy Steering Group (SSG) at its next meeting.

At the September meeting of the SSG there was discussion on the progress of the working groups and work being done to better understand people’s lived experiences of palliative care, as well as the proposed structure and timeline for the Strategy. A minute of the meeting will be available on the SG website, at https://www.gov.scot/groups/palliative-and-end-of-life-care-strategy-steering-group/ , once this has been agreed by the group.

The Scottish Government remains committed to supporting people with cystic fibrosis (CF) to benefit from medicines which help them to live fuller lives, for longer. That is why we introduced a memorandum of understanding (MoU) with the manufacturer, Vertex Pharmaceuticals, in 2018. As part of the MoU, there was an expectation that Vertex would resubmit each of their CF medicines to the Scottish Medicines Consortium (SMC) for a health technology appraisal (HTA). To progress this, the SMC is collaborating with the National Institute for Health and Care Excellence (NICE) on a multiple technology appraisal (MTA) of Vertex’s CF medicines, including Kaftrio ® .

While the NICE MTA is ongoing, I can confirm that all existing and new patients in Scotland who are on, or who are started on a CF medicine will continue to have access to that CF medicine after NICE and the SMC issue their final recommendations. This will be irrespective of the outcome of the appraisal and will cover any need to subsequently switch to a different CF medicine.

If any CF medicine is not recommended in the final MTA guidance, clinicians in Scotland will be able to request the use of that medicine on a case-by-case basis for any new patients using the Peer Approved Clinical System (PACS) Tier Two process. National guidance explicitly states that Health Boards should not take account of the cost of medicines when considering applications using the PACS Tier Two system.

The National Institute for Health and Care Excellence (NICE) multiple technology assessment (MTA) final guidance is currently expected to be published on 20 March 2024.

As the Scottish Medicines Consortium (SMC) is partnering with NICE in the assessment of these medicines, the SMC will publish recommendations aligned with the final NICE guidance thereafter for Health Boards in Scotland to consider.

Following the most recent request from the Scottish Hospice Leadership Group and Hospice UK on 20 November for remedial funding to address their estimated deficits, as well as a new national funding framework and arrangements to future proof partnership and funding arrangements, I convened a round table with independent hospices and Health and Social Care Partnerships on 5 December. I indicated that unfortunately, their ask for funding remains unaffordable.

The financial position across Scottish Government is extremely challenging and work is ongoing to identify measures to address the continued challenges in 2023-24 and beyond.

Integration Joint Boards are responsible for the governance, planning, and resourcing of adult palliative care services, including hospices, using the integrated budget under their control. We will therefore also continue to work with Integration Joint Boards and independent hospices to explore solutions and options for longer term sustainable planning and funding for the hospice sector.

My officials engage with the pharmaceutical industry on a range of matters, including the development of new medicines, and keep me updated as required.

The Chief Pharmaceutical Officer last met with Vertex Pharmaceuticals on 6 December 2023 and continued to impress upon them the importance of offering a revised price to address the concern that the current price of the cystic fibrosis (CF) medicines covered by the multiple technology appraisal (MTA) exceeds what the NHS would consider reasonable. She also discussed the ongoing availability of clinical trial CF medicines, including when a trial is stopped.

The funding and commissioning of specialist and general palliative and end of life care services, including workforce planning and allocating resources for staffing, is a matter for Integration Joint Boards (IJBs). It is the responsibility of IJBs to plan and commission adult palliative and end of life care services for their areas using the integrated budgets under their control.

Scottish Government officials will continue to engage with Health and Social Care Partnerships (HSCPs) and Scottish hospices in relation to supporting local planning, commissioning and resourcing of independent hospice care.