Citizen Participation and Public Petitions Committee 10 December 2025
Thank you very much, Mr Mountain. It is encouraging to hear about the progress that has been made during the period in which we have been considering the petition.
PE2038, lodged by Ehlers-Danlos Support UK, calls on the Parliament to urge the Scottish Government to commission suitable NHS services for those with hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorders, and to consult patients on their design and delivery. We last considered the petition on 9 October 2024, when we agreed to write to the Scottish Government and NHS Wales.
The Scottish Government’s response to the committee highlights NHS Education for Scotland’s awareness-raising videos, which encourage healthcare professionals to “think rare” when people present to them. Work has been under way to consider other resources to improve diagnosis, including a suite of digital tools that enable convenient and quick decision making. The response also points to assessment and referral guidance for hypermobile Ehlers-Danlos syndrome that was developed by NHS Dumfries and Galloway last year.
The response from NHS Wales outlines its work to create an international pathway, which will offer a number of supports, including advice on diagnosis and treatment for primary care clinicians, direct access to therapy services for primary and community care rehab and supported self-management interventions, and clear referral guidance for those with the rarer forms of EDS that require genetic testing and speciality involvement. The Scottish Government has confirmed that it will speak to its Welsh counterparts about the project plan for Ehlers-Danlos syndrome and consider whether it would be feasible for a similar exercise to be taken forward in Scotland. The petitioner has provided a written submission that reiterates her view that EDS is not actually a rare condition, with studies suggesting a prevalence of about 1 in 227 and 1 in 500.
The submission also sets out a number of questions for the Scottish Government.
PE2080, which was lodged by Louise McKendrick, calls on the Scottish Parliament to urge the Scottish Government to implement screening for people with Li-Fraumeni syndrome in line with the guidelines recommended by the UK Cancer Genetics Group.
We last considered the petition on 15 May 2024, when we agreed to write to Cancer Research UK, the Scottish Government and NHS Scotland genetic laboratories in Aberdeen, Dundee, Edinburgh and Glasgow. The Scottish hereditary cancer genetics group states that NHS Grampian, NHS Tayside, NHS Lothian and NHS Fife are all offering surveillance for patients with Li-Fraumeni syndrome, in line with the guidelines published by the UK Cancer Genetics Group in 2020. However, the SHCGG considers that there is a gap in the Scotland-wide process for managing patients.
In its submission, Cancer Research UK encourages the Scottish Government to strengthen its links with the research community in this area, as well as to engage in further dialogue from the UK National Screening Committee. The NSC has not made any recommendations about targeted surveillance or screening programmes for those with Li-Fraumeni syndrome.
PE2086, which was lodged by William Queen, calls on the Scottish Parliament to urge the Scottish Government to acknowledge those who are injured by Covid-19 vaccines and to have the NHS offer appropriate treatment to them. We last considered the petition on 5 March this year, when we agreed to write to the Cabinet Secretary for Health and Social Care and NHS Scotland.
The Scottish Government’s response to the petition reiterates that, in many cases, it may be difficult for a clinician to explicitly determine whether an illness or condition is linked to vaccination, and that it understands how that lack of acknowledgement may be deeply frustrating for citizens. The submission reiterates that, if a patient has been vaccine injured and is experiencing a particular condition or symptom as a result, the NHS should treat them for that condition, as it would any other patient who displayed those symptoms, regardless of the cause. The petitioner’s most recent submission highlights differences in the national response to long Covid and vaccine injury. He states that resources have been given to address long Covid, whereas people with vaccine injury feel ignored.
As I set out in my opening remarks, we are now limited in the time remaining in this parliamentary session. I feel that we have made as much progress as we can with the petitions. For one or two of them, the petitioners may want to see the realisation of promises that have been made, and fresh petitions may well emerge in the Parliament’s new session.
Mr Torrance, do you have any recommendation for the committee?