Current status: Answered by Maree Todd on 11 January 2022
To ask the Scottish Government whether it will provide an update on the number of people with cystic fibrosis in Scotland who are currently on the waiting list for a lung transplant, and what steps it will take to improve outcomes for such people.
At the present time there are 20 patients from Scotland who are awaiting a lung transplant. Due to the very small numbers of patients who have an underlying diagnosis of Cystic Fibrosis who meet the criteria for listing for transplantation, to prevent inadvertent patient identification the most specific answer that can be given is that this is fewer than five individuals. These patients are being managed jointly by the Scottish Cystic Fibrosis Specialist Centres and the transplant clinical team in Newcastle.
The Scottish Government is committed to working to improve outcomes for people with rare conditions, including cystic fibrosis. We are developing an Scottish Action Plan for Rare Disease based on the four priorities of the UK Rare Disease Framework: faster diagnoses, increased awareness, better care co-ordination, and access to specialist treatments and care.