Chamber and committees

Clinical geneticists are represented on Scotland’s Rare Disease Implementation Board (RDIB) where issues around the referral and diagnosis of individuals with hEDS and HSD have been discussed. RDIB are responsible for overseeing the implementation of Scotland’s Action Plan for Rare Diseases (2022) and the priorities for the coming year set out in our recent Progress Report (August 2024). Faster diagnosis remains one of these priorities, for all rare conditions.

Scotland’s Action Plan for Rare Diseases (2022) and Progress Report (August 2024) note awareness raising among healthcare professionals as the most important of our priorities, including making educational and training materials available for rare conditions. Work is underway with NHS Education for Scotland to develop the first of these, for all rare conditions, which will be video based. We will continue to explore opportunities to develop or signpost further learning resources.

Discussions around the development of care pathways for rare conditions have taken place at Scotland’s Rare Disease Implementation Board (RDIB) and with our counterparts in the UK government and other devolved nations. We will continue doing so to explore how care could be improved in this way.

The Progress Report on Scotland’s Action Plan for Rare Disease (August 2024) noted the discussions taken forward with NHS Scotland regarding the implementation of Future Care Planning, shared decision making and the Right Decision Service. These are all useful tools that can be used by people with a rare condition to encourage agency in making the most of consultations, and assist healthcare professionals in knowing what matters most to the person involved. We will continue to promote the use of these tools and any others for people living with a rare condition.

Scotland’s Action Plan for Rare Diseases (2022) set out actions to improve co-ordination of care for rare conditions. Our recent Progress Report (August 2024) noted progress including Future Care Planning, shared decision making and the Right Decision Service, all of which we will continue to promote as useful tools to improve the co-ordination of care.

The Scottish Government engages regularly with stakeholders across the private rented sector to understand issues that may impact on landlords and their ability to fulfil their legal obligations.

Where necessary, Business and Regulatory Impact Assessments (BRIAs) are used to assess the costs, benefits and risks of any proposed legislation that may have an impact on the public, private sector, third sector or regulators.

We will continue to engage and listen to the views of landlords, tenants and investors, through the Private Rented Sector (PRS) Stakeholder Group, the Housing Investment Taskforce, as well as ongoing targeted stakeholder engagement.

The First Minister confirmed the Scottish Government’s intention to bring forward a Heat in Buildings Bill in the recent Programme for Government. We will continue to work with businesses, including the private rented sector to understand the impacts and benefits of our proposals. The Bill and any subsequent regulations will each be accompanied by a full Business and Regulatory Impact Assessment.

The following table outlines the last five financial years of allocations for Fair Start Scotland:

We consulted in 2022 on A New Deal for Tenants – draft rented sector strategy. This set out the Scottish Government commitment to deliver a successful and high quality, affordable and fair rented sector and invited views on how we can deliver this for the rented sector as a whole.We are progressing some elements of the New Deal for Tenants through Housing (Scotland) Bill and we are committed to publishing a final rented sector strategy in due course.