Chamber and committees

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.

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.

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.

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.

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.

The new Palliative Care Strategy aims to ensure that everyone in Scotland, regardless of location, receives well-coordinated, timely and high-quality palliative care, care around death and bereavement support based on their needs and preferences, including support for families and carers.

We are aware of the importance of ensuring that the Strategy takes account of the differing needs of people living in rural and island areas, and of the particular challenges in these areas. Work is currently being undertaken to understand the lived experiences of users of palliative care services in rural and island settings. We have also asked our working groups, who are feeding into the Strategy, to give particular consideration to the impact that any actions they are recommending may have on rural and island areas.

To ensure that people get the financial support that they are entitled to as quickly as possible, adult disability benefit applications from people with a terminal illness in Scotland are fast-tracked. We also ensure that those who are terminally ill automatically receive the highest rates of assistance that they are entitled to, with no award reviews. They are eligible for this support straight away, with no qualifying period.

The new palliative care strategy will seek to understand and respond to the social determinants of people’s experiences towards the end of life, including financial insecurity and housing.

We recognise the significant impact on people, businesses and communities in areas affected by storm Babet. The Scottish Government is committed to playing its part in helping them through this horrible experience which has destroyed so many people’s property and belongings.

We recognise the significant impact on people, businesses and communities in areas affected by storm Babet. The Scottish Government is committed to playing its part in helping them through this horrible experience which has destroyed so many people’s property and belongings.

The number of Expansion Posts created in 2023 was not impacted by the reprofiling of the Health Workforce Expansion Posts budget line, as set out in the letter from the Cabinet Secretary for Finance to the Finance and Public Administration Committee of 21 November 2023. The number of postgraduate specialty training expansion posts to be added in 2023 was set by Scottish Ministers in late 2022, on the basis of recommendations from the Scottish Shape of Training Transitions Group.

The Expansion Posts budget line was reprofiled in 2023, following the budget setting process for the 2023-24 financial year. The number of specialty training expansion posts being recruited to was not amended as a result of the reprofiling of this budget line. The budget was reprofiled in accordance with the application of directorate savings targets in the 2023-24 financial year; £3 million was the savings target for Health Workforce, with the saving being applied to the Expansion Posts line for budgeting and accounting purposes. The savings target was applied to this line as historically the forecast budget for Expansion Posts has exceeded actual costs incurred in year.