Continued Petitions

Welcome back. We move to the consideration of other open petitions. Given that there are only a handful of meetings of the committee left, it is terribly important to say that, irrespective of the merits of many petitions, the committee will have no option but to close them before this session of the Scottish Parliament comes to an end with the final sitting of Parliament in March. Therefore, although there are a number of very important petitions on which the committee believes that there is still work to be done, the petitioners’ interests may well be best served by the lodging of a fresh petition to the Parliament when it meets in its new session in May next year.

We may hold over a very small number of petitions in the legacy document that we pass on to our successor committee in the next session. In the committee’s last meetings before the dissolution of the Parliament, we may feel that there is little that we can do to advance the aims of a petition, given the very limited time still open to us, but that is no reflection on its merits.

Our consideration of the sequence of petitions under this item follows on from our evidence session with the Cabinet Secretary for Health and Social Care on 24 September, at which we explored a number of themes: patient experience, diagnostic and treatment pathways, capacity skills and training, sustainability of funding and health service infrastructure, and post-Covid-19 impacts and responses. After the evidence session, the Cabinet Secretary for Health and Social Care followed up in writing on a number of the outstanding issues.

This morning, we will consider the petitions that sit under the theme of diagnostic and treatment pathways, and then we will consider a petition on the theme of sustainability of funding and health service infrastructure. The committee has explored the specific issues raised in the petitions by seeking written evidence from stakeholders and ministers. The thematic issues have also been explored in our recent oral evidence session with the Cabinet Secretary for Health and Social Care.

During the thematic evidence session, we raised that a number of the petitions have highlighted issues with diagnostic and treatment pathways, particularly in relation to conditions that may not be easily understood or easily diagnosed. The cabinet secretary stated that a balance needs to be struck, as decisions about pathways might need to take place at a national level while at other times it will be for local boards to determine how best to deliver services. I will provide an overview of the evidence received on each petition since it was last considered, and we will then move to consider what action should be taken on the petitions.

We have been joined by our colleague Edward Mountain, who has an interest in the petitions in this group. I will be able to invite only very brief comments, given the volume of business that we have before us this morning.

PE1952, which was lodged by Jane Clarke, calls on the Parliament to urge the Scottish Government to instruct Scotland’s NHS to form specialist services, training resources and a clinical pathway for the diagnosis and treatment of patients exhibiting symptoms of autonomic nervous system dysfunction—dysautonomia. We last considered the petition on 11 December, when we agreed to write to the Minister for Public Health and Women’s Health, from whom we have just heard.

The minister’s response reiterates that autonomic disorders are part of the neurology speciality training curriculum, and it is within the remit of neurologists to diagnose and manage symptoms as part of their routine practice in the majority of cases. The submission also highlights the training resources on autonomic nervous system dysfunction that are available for our practitioners on the NHS learning platform. The petitioner and Dr Lesley Kavi have provided a joint submission, which states that PoTS UK is not aware of any neurology specialists in Scotland who manage postural tachycardia syndrome and related conditions.

The submission highlights a 2025 survey of people with suspected and diagnosed autonomic dysfunction, which revealed that 90 per cent of patients experienced difficulty accessing NHS healthcare, and 59 per cent reported that their GP had not heard of PoTS or did not believe that it existed.

PE2031, lodged by Maria Aitken on behalf of the Caithness Health Action Team, calls on the Scottish Parliament to urge the Scottish Government to ensure that children and young people in Scotland who have type 1 diabetes and would benefit from a life-saving insulin pump are provided with one, no matter where they live.

We last considered the petition on 29 May 2024, when we agreed to write to the Scottish Government and NHS Highland. In his correspondence following the evidence session, the Cabinet Secretary for Health and Social Care highlighted significant progress made since the petition was lodged. In 2024, the Government committed £8.8 million to expand access to closed-loop systems—CLS—partly to ensure that all children and young people living with type 1 diabetes in Scotland could access CLS. By early this year, approximately 75 per cent of the under-18s affected had CLS access. The Cabinet Secretary for Health and Social Care reiterated that NHS boards are expected to offer hybrid closed-loop systems to all eligible under-18s within a year of referral. He also points to specific targeted funding for NHS Highland to support access to diabetes technology, including for insulin pumps.

Mr Mountain has an interest in the petition. Is there anything that you would like to contribute, Mr Mountain?

Very briefly, convener, if I may. First, I thank the committee for all the work that it has done on the petition. It is without doubt due to the fact that the committee got involved in the petition that we are in the situation that we are in now. I appreciate the extra money that the Government has put forward and that the committee’s scrutiny has driven NHS Highland to make sure that all affected children, bar a small few—most of whom do not want insulin pumps—have got insulin pumps. I think that this is a victory for the committee, and I thank you and your team for doing that. I fully understand why you would now close the petition, convener.

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?

Thank you. Does the committee agree to that suggestion?

Members indicated agreement.