Seòmar agus comataidhean

We can see whether SPICe can undertake that work. I would also like us, if we can find the information, to establish whether there is any clinical evidence on the consequences of vaping. Clearly, ASH is wholly funded by the Scottish Government, so it will not disagree with the Scottish Government’s proposals. It is not that I wish to—well, I suppose that I do, but I would just like something that is a little bit independent of ASH as we try to identify something factual on these matters, instead of our just getting information from lobby organisations wholly funded by Government.

Our final new petition is PE2038, which has been lodged by Ehlers-Danlos Support UK and asks that suitable NHS services be commissioned for people with hypermobile Ehlers-Danlos syndrome, or HEDS, and hypermobility spectrum disorders, or HSD.

The SPICe briefing explains that Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissues in the body and that there are different types of EDS, including hypermobile EDS. The briefing also outlines other hypermobility spectrum disorders and notes that guidance on and guidelines for managing EDS have not been straightforward, due to some views that the evidence base is insufficient and varied opinions on the best way of managing the conditions.

The Scottish Government has outlined that diagnosis and patient care are provided by local and regional rheumatology services with the input of other specialities. Its submission highlights the Scottish rare disease action plan and states that the actions in the plan will address issues around the lack of signposting, referral pathways and overall care co-ordination, including for those living with HEDS and hypermobility spectrum disorders. The petitioner’s written submission disputes the categorisation of HEDS and HSD as rare, stating low diagnosis of the issue and saying that four out of five people to whom it has spoken have not been diagnosed.

The submission also refers to a bid made in 2018 by Professor Stuart Ralston for a specialist centre that was supported by consultants, therapists and patients but not by the Scottish Society for Rheumatology. The petitioner highlights concern about access to services through rheumatology, stating its understanding that rheumatologists have been directed not to see people with non-inflammatory conditions.

In light of the submissions that we have received in addition to that from the petitioning organisation, do colleagues have any suggestions for action? If not, I suggest that we write to the national services division to ask whether it remains committed to producing a paper highlighting the issues and service gaps that people with EDS and HSD encounter; why the proposal in 2018 by Professor Stuart Ralston for a specialist EDS centre was rejected; and whether it has monitored the delivery of its commitment to encourage regional expertise and services in place of a specialist centre. We might also write to the Government to ask how it intends to engage with people with HEDS and HSD in taking forward actions under the rare disease action plan, either individually or through Ehlers-Danlos Support UK.

Are members content to proceed on that basis?

Members indicated agreement.

Is that a metaphor that you recognise more generally, minister?

On which note, I will suspend the meeting briefly. Thank you very much.

Good morning, and welcome to the 14th meeting of the Citizen Participation and Public Petitions Committee in 2023. We have apologies from our colleague David Torrance, the deputy convener. His substitute, Marie McNair, joins us online. Good morning, Marie, and all those following our proceedings.

Under agenda item 1 we must decide whether to take in private agenda item 6, which relates to our public participation inquiry report, in which we recommended the establishment of two further people’s panels this parliamentary session. The committee has a role in choosing the topics for the panels and item 6 allows us to consider a recommendation from the Parliament’s participation and communities team on the topic for the first panel. It also allows us to consider the topic in the context of the chamber debate on our report, which will take place on 26 October. This morning, I facilitated a Scottish Parliament information centre business breakfast about the committee’s report, so there is quite a lot of interest in and engagement on it. Are members content to take item 6 in private?

Members indicated agreement.

We have a packed gallery for the excitement of our consideration of petitions in due course, but we have two evidence sessions to take immediately. The first, unusually for the committee, is on pre-budget scrutiny. We usually resist that opportunity, on the basis that the committee does not have the same involvement in the budget as do other committees.

We welcome George Adam, the Minister for Parliamentary Business. The minister is supported online by Doreen Grove, head of open government, and by Amy Watson, principal research officer, both at the Scottish Government. Good morning to both of you. I assume, minister, that if you want your colleagues to come in, I can leave it you to invite them to contribute to our thinking. I understand that you would like to make a brief opening statement, which would be helpful. I think that you probably understand the narrow focus of our interest in relation to the budget. Over to you.

Thank you very much. I know that you are not here to give evidence, but I was going to ask a question about the number of people who might be involved, and you have answered it. I think that you have quantified that at around 6,000.

I suppose that the other potential reason, which you did not volunteer, is that this request has been blended in with other requests for extension to the scheme and, therefore, rather than moving on any, the Government moves on none, in case it is then used as the basis for an argument in another area of extension. I am not arguing that that would be the right thing to do, but I wonder whether that is also in the minds of people who have not taken this issue forward.

I am happy to include that, as well.

We could write to the Government asking what the outcome of any of that was. That would be perfectly reasonable, particularly in relation to this point. Is there anything else that we could do?

The next petition is PE1977, which was lodged by Helen Duncan. The petition calls on the Scottish Parliament to urge the Scottish Government to amend the law and update the “National Guidance for Child Protection in Scotland 2021” to require social services to inform biological fathers of concerns about their children.

We previously considered PE1977 at our meeting on 18 January—although it seems to be fresher in my mind than that; the year has gone in—when we agreed to seek views from a number of stakeholders.

We have received responses from Shared Parenting Scotland, the Scottish Children’s Reporter Administration, The Promise Scotland, and CELCIS—Scotland’s Centre for Excellence for Children’s Care and Protection. Many of the responses highlight the need for discretion and flexibility in relation to informing parents about welfare concerns, and note that there are some circumstances in which an obligation to inform a father risks undermining efforts to protect the safety and wellbeing of the child or children.

Shared Parenting Scotland suggests that there is already an obligation on social work and other agencies to inform both parents of concerns about their children, and questions why that is not happening in practice.

According to CELCIS, existing legislation and guidance are sufficient to support best practice, and a more effective way to address the issues that are raised by the petition would be through improvements to workforce learning, knowledge and skills in this area.

In light of that, do members have any comments or suggestions?