Seòmar agus comataidhean

PE2038 calls on the Scottish Parliament to urge the Scottish Government to commission suitable NHS services for people with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders and to consult patients on their design and delivery. For consideration of the petition, we have been joined by our MSP colleague Michael Marra, who has taken an interest in the petition. Good morning, Mr Marra.

We previously considered the petition on 4 October last year, when we agreed to write to the Scottish Government and the national services division. The Scottish Government’s response provides information about its engagement work with individuals living with Ehlers-Danlos syndrome and hypermobility spectrum disorders. The submission highlights the Government’s work on the rare disease action plan and states that officials would be happy to meet the petitioner to discuss that work further.

The national services division’s submission explains that a short-life working group that it facilitated found that

“there was a need for specific specialist expertise in Scotland to improve patient care”

but one of the reasons why that work has not progressed is that the national specialist services committee determined that

“care might be better delivered through the development of a set of clinical guidelines, a patient pathway of care or a networked community of practice.”

The response from the petitioner—Ehlers-Danlos Support UK—states:

“This is exactly what we are trying to achieve”,

but it has been informed by Healthcare Improvement Scotland that there is “not enough evidence” to support the creation of guidelines from the Scottish intercollegiate guidelines network. The petitioner has shared that NHS Wales has now

“committed to co-creating a hypermobility pathway for primary care to help GPs diagnose and manage these conditions.”

The petitioner also outlines statistics to support its view that Ehlers-Danlos syndrome and hypermobility spectrum disorders are not necessarily rare disorders, as they often go undiagnosed.

We have received a written submission from our colleague Emma Roddick, who is unable to attend the meeting. Her submission, which is available on the committee’s website, touches on her experience of living with chronic pain and the value of meeting other people who have similar experiences to her own. She acknowledges that doctors

“cannot be expected to know everything”,

but she believes that there should be

“a nationally agreed standard for pain pathways to ensure that people do not fall through the cracks”.

Before we consider what we might do next, I invite Michael Marra to speak to the committee.

Thank you very much. There were a couple of good suggestions in there.

I note that, in addition to Mr Marra and Emma Roddick, a number of our colleagues—Bob Doris, Angela Constance, Bill Kidd, Pauline McNeill, Màiri McAllan, Daniel Johnson, Martin Whitfield and Michelle Thomson—have all been engaged on the issue, so it has attracted a considerable amount of attention and concern among parliamentary colleagues.

I am happy to take forward all the suggestions that have been made. We might also want to ask about the view that the current way of moving forward might not be the best model to achieve the end result. It would be useful to put that point to the Scottish Government to see what its reaction is, because that view is obviously very clearly felt.

We will keep the petition open. There are a number of ways in which we can continue to pursue the issue. I thank the petitioner for lodging the petition and Michael Marra for joining us this morning.

We previously considered the petition at our meeting on 6 December 2023, when we agreed to write to the Minister for Public Health and Women’s Health, the Stroke Association and Chest Heart & Stroke Scotland. I am pleased to say that we have received responses from all those that I have just listed, which are detailed in our meeting papers, to which I turn.

The minister tells us that work is on-going to establish existing levels of awareness of stroke symptoms and FAST, with consideration also being given to how awareness of less common symptoms can be increased. The minister also indicated that there are no plans to deviate from supporting the use of the FAST approach, though this position will be regularly reviewed based on the best available evidence.

We have also received a submission from the petitioner expressing disappointment that the Scottish Government has no plans to deviate from the FAST approach. The petitioner has also highlighted that, where clinicians are reliant on the FAST test, that can have devastating effects for patients presenting with less common symptoms, as was the case for his father.

Responses from the Stroke Association and Chest Heart & Stroke Scotland highlight the need for further research before committing to the use of the BE FAST—balance, eyes, face, arms, speech, time—approach in a new nationwide campaign.

Before I ask the committee to comment, would Mr Kerr and Mr Stewart like to address us?

Thank you very much, Mr Stewart. Mr Kerr, do you have anything that you wish to add?

I do not know whether colleagues are so minded, but this might be a petition on which we are prepared to take further oral evidence. I wonder whether we might consider convening a round-table discussion of relevant stakeholders to discuss the issues with the committee. That might include the Stroke Association and Chest Heart & Stroke Scotland. The clerks and I could agree which organisations to invite, if the committee is content to leave that task to us. We might then be able to have a more detailed discussion to tease out the issues, all of which might then put us in a stronger position as a committee to address them directly with the minister.

Are colleagues content that we do that?

Members indicated agreement.

Are we content on that basis to close the petition?

Members indicated agreement.

Item 3 is consideration of a number of new petitions. As I always do before we begin consideration of new petitions, I point out to those who might be watching or following the proceedings, or to any petitioner who may have tuned in to see us discuss their petition, that, in advance of this consideration, we invite the Parliament’s independent research body, the Scottish Parliament information centre, to provide us with a briefing on the issues that have been raised in it. We also ask the Scottish Government for its preliminary view. We do that simply because, historically, the committee, on our first consideration of a petition, would instruct those bodies to respond. Our current approach allows us to shortcut that and get to a meaningful discussion.

The first new petition, PE2103, from Dr Julie Badcock, calls on the Scottish Parliament to urge the Scottish Government to standardise the prescribed learning hours for primary and secondary establishments across all local authorities in Scotland.

The SPICe briefing explains that the length of the day and the number of learning hours is a matter for each local authority. It also explains that ministers have the power to make regulations that would set the minimum number of learning hours that each pupil should receive.

In 2023, the Scottish Government consulted on using those powers to prescribe the minimum annual number of learning hours. The consultation closed in June 2023 and the Scottish Government is yet to set out what its next steps will be. The Government’s submission states that it is carefully considering the very large number of responses and that it intends to publish its analysis of the responses in due course.

Its submission also states that Government does not support any reduction of learning hours in any local authority. That view was expressed in a letter to all local authorities last year. Ministers are working to reach an agreement with local government on the issue. The submission states:

“If no agreement is reached, Ministers remain open to taking steps towards utilising”

its powers to regulate the number of learning hours.

The issues in the petition are live, presently. Do colleagues have any comments or suggestions??

We might specifically ask whether that would include the use of a registered conservation-accredited engineer. I think that would be useful.

Are members content that we should write to the Scottish Government in the first instance?

Members indicated agreement.