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Island Community Representation on Boards (PE1862)
Agenda item 2 is consideration of continued petitions. We have eight such petitions to consider.
The first, PE1862, from Rona MacKay, Angus Campbell and Naomi Bremner, on behalf of Uist economic task force, calls on the Scottish Parliament to urge the Scottish Government to introduce community representation on boards of public organisations delivering lifeline services to island communities.
This is a long-standing petition, which we last considered at our meeting on 24 January 2024, when we agreed to write to the Commissioner for Ethical Standards in Public Life in Scotland, the then Minister for Transport and local authorities and community councils representing island communities.
The commissioner, although not responsible for defining what attributes might be required for those undertaking a board position, tells us that there is nothing in the “Code of practice for ministerial appointments to public bodies in Scotland” or accompanying guidance that would preclude ministers from including “island knowledge” as a requirement for board membership.
We have also received responses from the Shetland Islands Council, the Western Isles Council and Orkney Islands Council, which support the principle of adding “island knowledge” or “lived island experience” as essential criteria to the skills matrix for boards that are delivering lifeline services to island communities.
The Cabinet Secretary for Transport tells us that, although the skills matrix will vary depending on the skills of the current board membership and the specific board vacancy, on every occasion, applicants are asked
“to demonstrate a knowledge and understanding of how lifeline services affect our island communities.”
We have also heard from the cabinet secretary and her officials that more needs to be done to attract and appoint island residents to boards, with an emphasis on advertising vacancies as widely as possible.
We have pursued the aims of the petition quite well. That is the position, and there is nothing precluding those aims. The Government agrees that it still needs to try to achieve more. Do we have any recommendations for action?
I agree. We have done an extensive piece of work looking at the issue, and it is valid to have conducted that. Unfortunately, we have reached the end of the road and, therefore, we should close the petition under rule 15.7 of standing orders, on the basis that consideration has been given to appoint island residents to the boards of public organisations that are responsible for delivering lifeline services to island communities, and that the Scottish Government has stated:
“regardless of what other skills may be required, applicants are asked to demonstrate a knowledge and understanding of how lifeline services affect our island communities.”
Thank you. Are colleagues content that we proceed on that basis?
Members indicated agreement.
We thank the petitioner for bringing the petition to us. It has been an interesting topic, and we have clarified issues to some extent. We will now see what difference it has made. If, in the next session of Parliament, it still seems that the issues are as they were, without improvement, we would very much welcome the petitioner considering whether it would be worth while lodging a fresh petition at that time.
Digital Exclusion (Rural Households) (PE1931)
Our next continued petition, PE1931, from Ian Barker, calls on the Scottish Parliament to urge the Scottish Government to prevent digital exclusion for rural properties and their households by giving priority in the reaching 100 per cent—R100—programme to properties with internet speeds of less than 5 megabits per second.
We last considered the petition at our meeting on 22 November 2023, when we agreed to write to the Scottish Government and Openreach. After the meeting, we received a written submission from the petitioner highlighting his on-going frustration that people with speeds of below 5Mbps are not being prioritised and expressing that he feels like people are being digitally excluded. I am sure that colleagues will have had letters from constituents on those issues.
The Scottish Government’s response informs us that about 52,000 properties remain eligible for the R100 Scottish broadband voucher scheme and, as at December 2023, 3,639 connections had been delivered through the use of those vouchers. Since then, around 460 vouchers have been issued, with approximately 100 further vouchers requested.
Openreach has stated that it routinely reviews the sequencing of its build programme to identify additional build that can be brought in. That is linked to the delivery of connections to an additional 8,653 properties through contractual overspill.
That is what we have been told. It remains a live issue. I do not know whether colleagues have any suggestions as to how we might respond in that light.
Further work needs to be carried out on the petition to understand how the voucher scheme is working—or not, as the case may be. It may be down to access to broadband. Even if someone can pay for a service, if they cannot actually get that service, it is slightly irrelevant that they can get a voucher for it.
We should write to the Scottish Government to ask whether, in the light of the low uptake of vouchers, it believes that the Scottish broadband voucher scheme is an adequate approach to providing connections to properties in rural Scotland.
As there are no other suggestions from colleagues, are we content to proceed on that basis?
Members indicated agreement.
We will keep the petition open, and we will proceed to make that further inquiry.
Gender-based Violence (Education) (PE1934)
Petition, PE1934, from Craig Scoular, on behalf of Greenfaulds high school rights and equalities committee, calls on the Scottish Parliament to urge the Scottish Government to work with Education Scotland to develop an educational resource on gender-based violence for all year groups in high school. The resource should educate on the causes of gender-based violence and ensure that young people leave school with the tools to help them to create a safer society for women.
We last considered the petition at our meeting on 8 November 2023, when we agreed to write to the Cabinet Secretary for Education and Skills and the University of Glasgow. At that time, the cabinet secretary indicated that the gender-based violence in schools working group was expected to publish its national framework to help schools to tackle sexual harassment and gender-based violence.
The framework has been published, and the cabinet secretary has stated that the Scottish Government has committed to commissioning an independent review to establish positive practice and further areas for improvement during this parliamentary session. The submission also highlights the revised statutory teaching guidance, which includes a section to support learning and teaching on consent and healthy relationships. The Scottish Government consulted on the guidance last year and is analysing the responses.
Meanwhile, the University of Glasgow’s written submission provides details of its evaluation of the equally safe at school intervention. The aim of the evaluation is to determine whether the intervention is effective, including cost effective. Its work will take place with six schools over two years, with the full results expected in December 2026.
Colleagues, do you have any suggestions?
We should write to the Cabinet Secretary for Education and Skills to ask what the next steps will be following the publication of the gender-based violence in schools framework, when the Scottish Government intends to commission an independent review of the framework and when it expects that review to conclude.
As there are no other suggestions, are colleagues content with that approach?
Members indicated agreement.
We will keep the petition open and act on Mr Choudhury’s suggestions.
Young People (Question Session with First Minister and Cabinet) (PE1990)
Our next continued petition, PE1990, from Jordan Anderson, calls on the Scottish Parliament to urge the Scottish Government to request the introduction of a monthly chamber session to allow young people to put questions to the First Minister and, as was the case at the time that the petition was originally lodged, “her” Cabinet. Of course, that is now “his” Cabinet.
We last considered the petition on 25 October 2023, when we agreed to write to a number of stakeholders and the Scottish Parliamentary Corporate Body, of which I should declare that I am a member. We have received a response from the National Union of Students Scotland, which states that it has no position on the petition and that it aligns itself with the views of the Scottish Youth Parliament.
The Scottish Parliamentary Corporate Body’s response confirms that it has not had representations from the Scottish Youth Parliament to request more sittings in the Scottish Parliament building. The response highlights that a new annual exhibition slot has been added to the terms of its partnership agreement with the Scottish Youth Parliament. The next sitting of the Scottish Youth Parliament is due to take place in the Scottish Parliament on 31 October and 1 November 2024.
In the light of that, do colleagues have any comments or suggestions for action?
?It is an interesting suggestion and, indeed, the work that has been carried out to highlight it to relevant authorities has been useful. However, we should close the petition under rule 15.7 of standing orders, on the basis that the committee’s report on participation considered a similar recommendation and concluded that
“We do not support the recommendation for a question time which is part of formal Parliamentary business, as we think it raises too many difficulties both of practice and principle”.
Mr Golden points to our inquiry on deliberative democracy. That was one of the issues that we pursued, and it had attractions, but it also had the very difficulties that Mr Golden has identified.
Are colleagues content to close the petition?
Members indicated agreement.
We thank Jordan Anderson for the petition. I would very much urge that the issues raised within it be pursued through the Scottish Youth Parliament. Of course, the Parliament and the Scottish Parliamentary Corporate Body would consider requests actively made through that body.
People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (PE2038)
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.
Good morning, convener.
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.
09:45
I greatly appreciate being afforded the opportunity to address the committee. This is the first time that I have spoken to the committee about the petition, and I would like to provide an update on some of the developments from my involvement with the petition.
My involvement relates to constituents who are living with such conditions and have faced challenges in accessing treatment and support. That includes some who have waited 20 years for a diagnosis. I have lodged a motion for a members’ business debate on the subject, which has gained cross-party support, for which I am grateful. I look forward to having that debate in the chamber when it is scheduled.
Last month, I was pleased to host a round-table meeting in the Parliament with Ehlers-Danlos Support UK and researchers from the University of Edinburgh, Kathryn Berg and Dervil Dockrell, who shared the findings of their recent research into EDS, which revealed that people are waiting decades for a diagnosis, with a large proportion of those people either leaving Scotland to access healthcare in England or paying for private treatment. That demonstrates that there is a clear gap, as that research testifies, in the services that are available in Scotland for people living with HEDS and HSD. For that reason alone, I urge the committee to keep the petition open for further consideration, and I will come on to suggest some potential actions.
Ehlers-Danlos syndromes are a group of 13 heritable connective tissue disorders that are caused by genetic changes that affect connective tissues. Each type of EDS has its own set of features, but common features of various types of EDS include joint hypermobility, skin hyperextensibility and tissue fragility. That can cause a person’s joints to dislocate and their skin to be stretchy. They bruise easily and their wounds can take a long time to heal.
I have heard powerful testimony from constituents on living with such conditions. They have talked about being in constant pain, living with reduced mobility and having a limited quality of life, as well as the impacts on their mental health.
The most common type of EDS is hypermobile EDS, which accounts for about 90 per cent of the cases that are being considered today. There are various statistics on the prevalence of such conditions. The convener referenced some of them in his opening remarks. As he did and as colleagues from EDS UK have done, I point out that there is a crucial distinction between rare and rarely diagnosed. One study found that one in 500 people had a diagnosis of HEDS and HSD, so the matter certainly requires more investigation.
The Scottish Government’s submission on 12 October 2023 stated that the Government was
“considering what additional stakeholder engagement activities may be required throughout 2024.”
It also talked about
“the Rare Disease Implementation Boards’s intention to hold a number of ‘involvement meetings’ early in 2024”.
However, as it states in its latest submission, EDS UK does not feel that those meetings are an appropriate avenue for developing a specific care pathway for EDS, as they cover a range of rare diseases.
The response from the national services division on 13 October 2023 stated:
“The ongoing diagnostic, treatment, and care needs of hEDS and HSD patients are the responsibility of individual Health Boards”.
However, given the experiences of my constituents that I have highlighted and those that have been highlighted through research and the work of EDS UK, that system is simply not working at the moment.
The petitioner’s most recent submission calls for
“A pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders ... NICE/SIGN guidelines for Ehlers-Danlos syndromes and hypermobility spectrum disorders ... A coordinated, multidisciplinary approach to diagnosis and care for people with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders”
and, crucially,
“Support and training for healthcare professionals to deliver this.”
I commend the staff and volunteers at EDS UK for their continued determination on the issue.
I note that progress has been achieved in other United Kingdom nations to date. For example, in May, as the convener said, NHS Wales committed to co-creating a hypermobility pathway for primary care to help GPs to diagnose and manage the conditions. Colleagues at EDS UK have met community health pathway teams in Wales, which has helped to progress work on that pathway. Research and lived experience have shown that GPs are often not aware of such conditions or the potential treatment options that are available. Publishing a pathway would give clearer guidance to GPs and lead to improved patient experiences. At the round-table meeting that was held in the Parliament, there was a clear desire from the general practitioner workforce to have such information available to them.
As far as I am aware, we do not have community health pathways in Scotland, but there is the possibility for some collaborative work across the two nations of Scotland and Wales in that regard. I suggest that the committee might want to contact NHS Wales to find out more detail on the progress of that work to date and how it might be applicable to Scotland.
Thank you very much. There were a couple of good suggestions in there.
We should keep the petition open and, as well as doing what Mr Marra suggested, write to the Scottish Government to ask whether it accepts the petitioner’s view that Ehlers-Danlos syndrome and hypermobility spectrum disorders are not necessarily rare diseases, as they are often undiagnosed. In the light of that, we should ask what action is being taken, beyond the rare disease action plan, to improve diagnostic services. We should also highlight the commitment by NHS Wales to co-produce a hypermobility pathway for primary care and ask whether a similar exercise could be undertaken in Scotland.
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.
Parking Charges (Community Healthcare Staff) (PE2041)
PE2041, which was lodged by John Ronald, calls on the Scottish Parliament to urge the Scottish Government to encourage local authorities to exempt staff working at community healthcare facilities who do not have access to free on-site staff parking from on-street parking charges, to allow them to care for vulnerable and sick people in our country without it costing them thousands of pounds per year.
We previously considered the petition on 6 December 2023, when we agreed to write to the health secretary, the Convention of Scottish Local Authorities, the Royal College of Nursing, the trade unions Unison and Unite the union, and the Allied Health Professions Federation.
Responses in support of the petition’s ask have been received from the Royal College of Nursing, Unite and the Allied Health Professions Federation. Although being mindful of the need for sustainable travel, the RCN highlighted that parking arrangements
“form part of working conditions for RCN members and impact recruitment and retention rates.”
In its response, the Allied Health Professions Federation noted that, if allied health professionals
“are required to pay for parking, they would effectively be penalised for accessing their workplace.”
The then Cabinet Secretary for NHS Recovery, Health and Social Care’s response notes the expectation that all NHS boards in Scotland should have a policy in place that enables staff to be reimbursed for valid expenses, including car parking charges, but the response is clear that such policies should not be extended to
“cover staff who drive to their work and park their car all day at their base of work”.
We have also received a response from the petitioner, who remains concerned that community health staff who use their own cars for work are being discriminated against.
Do members have any comments or suggestions? There is a route for the reimbursement of such charges when community care workers are out in the community and have to use off-street parking, but it is clear that a different view is taken to permanent daily parking at a fixed place of work. Are there any suggestions for actions?
As a final follow-up, should we write to regional health boards to ask what options for support and reimbursement are available to community healthcare staff who are required to use their personal vehicle as part of their role?
I am content to do that. Are we all content?
Members indicated agreement.
Marie McNair, are you content that we pursue the matter a bit further?
Yes.
Thank you very much. We will keep the petition open. Having been directed to the view that local authorities have that ability, let us try to find out whether staff can, in fact, access that opportunity in practice.
FAST Stroke Awareness Campaign (PE2048)
That brings us to PE2048, from James Anthony Bundy. I see that Mr Bundy is with us in the gallery, along with his mother, I believe. The petition calls on the Scottish Parliament to urge the Scottish Government to increase awareness of the symptoms of stroke by reviewing its promotion of the FAST—face, arms, speech, time—stroke awareness campaign and ensuring that awareness campaigns include all the symptoms of a potential stroke.
We have been joined in our consideration of the petition by our MSP colleagues Stephen Kerr and Alexander Stewart. Good morning to you both.
Good morning.
Good 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?
I am delighted to be back again at committee to speak to the petition. I commend and congratulate the Bundy family for their tireless campaign since lodging the petition and prior to that.
It is interesting to hear the minister’s comments, but there is still room for further discussion about how we take forward the issue. We have already heard that there is an opportunity to develop BE FAST as a potential future approach. Indeed, the approach has been used, and there is a real challenge in ensuring that messaging gets out about it. However, there is still the risk of false positives with the use of that approach.
Throughout the campaign, we have all felt that it is better for someone to go to accident and emergency to find out whether they have had a stroke rather than sit at home and dismiss what is occurring because they are not experiencing FAST symptoms. However, they might be experiencing BE FAST symptoms. We need to continue discussing that. In the meetings that the Bundy family and I have had with the minister and the Cabinet Secretary for Health and Social Care, there has been quite a lot of discussion on that.
The Scottish Government could work with Public Health Scotland and NHS boards to trial BE FAST. If we have a trial, we could access real results and data, which would allow for informed decisions to be taken. As I said, people who do not fit into the FAST criteria are not given the opportunities to have, for example, a scan or to go through medical processes. Individuals have lost their lives, as Tony Bundy did. I believe that there is still room for improvement.
I urge that a trial be carried out, potentially by one health board, to consider the issue. The subsequent report would show what is happening and give more data. That data will set out the case to progress the matter.
Thank you very much, Mr Stewart. Mr Kerr, do you have anything that you wish to add?
10:00
I am here because James Bundy works in my office. I have known him and his family for a long number of years. Everyone will be aware of the circumstances that have brought the petition into being.
I just want to say that I completely agree with everything that Alexander Stewart has said. He has made a very reasonable request that the BE FAST approach be trialled somewhere.
I am at a loss, frankly, to understand why the Scottish Government and the minister are not prepared to consider carrying out research, or even to give consideration to the existing body of research in support of the adoption of BE FAST.
It has been put to colleagues and the Bundy family that, were BE FAST to be adopted, there would be an influx of people arriving at accident and emergency believing that they were perhaps having a stroke. The reality is that, if that were to happen and we were able to save lives—in this case, it is very close to home for James Bundy and his family—because the medical staff were aware of the BE FAST approach and the clinicians’ prioritisation was governed by a fuller appreciation of the symptoms so that a faster diagnosis could be made, perhaps a life could be saved. Therefore, I find it almost unreasonable that the minister is not prepared to consider even the existing body of research in her considerations and that the Government is not prepared to undertake or commission some research of its own. The cost of all those requests is minimal, but the value of a life is infinite.
Thank you, Mr Kerr. The issues that are raised in the petition are of considerable interest to colleagues on the committee, and there are a number of things that we might now reasonably consider doing to take it forward. Colleagues, do you have any suggestions?
We should first write to the national health service regional health boards and the Scottish Ambulance Service seeking information on any local stroke awareness pilots that they have undertaken, including their outcomes. In addition, we should write to the Scottish Government highlighting the contributions from Mr Stewart and Mr Kerr on data, on consideration of trials and on commissioning research, and to seek an update on its work to establish existing levels of awareness of stroke symptoms and whether that includes consideration of the awareness among clinical staff of symptoms beyond those captured by the FAST test.
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.
I thank Mr Stewart and Mr Kerr. Again, I note the presence of the Bundy family. I hope that they will be content that we will progress those issues. The evidence session, together with the further written evidence that we will seek, will give us an opportunity to pursue the issues that are raised in the petition.
Migrant Accommodation (Buffer Zones) (PE2049)
The next continued petition, PE2049, from Gilliane Petrie, calls on the Scottish Parliament to urge the Scottish Government to introduce buffer zones outside migrant accommodation to prevent anti-migrant groups from gathering in those spaces and help to protect occupants, including asylum seekers and refugees, from harassment and intimidation. We also considered the petition at our meeting on 6 December 2023, when we agreed to seek information from the Scottish Refugee Council, JustRight Scotland, COSLA, Police Scotland, and the Mears Group.
In its response, Police Scotland states that it considers current police powers as sufficient to address any unlawful behaviour that may arise in the vicinity of migrant accommodation as a result of protest activity.
The Mears Group believes that any decision about buffer zones would be a matter for the Home Office as the contracting authority for migrant accommodation, while also highlighting its use of private security teams to help manage protests, with support from the police.
The response from JustRight Scotland states its position that the rights to freedom of expression and peaceful assembly are fundamental rights and that lawful interference should be kept to a minimum and done cautiously. It also believes there is much more that can be done in Scotland to ensure that those seeking asylum are safe and secure in the place where they are living and in the community, with the response highlighting wider concerns about the use of institutionalised accommodation for people seeking asylum.
In light of the responses that we have received, do members have any comments or suggestions for action?
We have done some work on the petition and, ultimately, from the evidence that you have just highlighted, we should close the petition under rule 15.7 of standing orders on the basis that Police Scotland already has powers to address any unlawful behaviour that may arise in the vicinity of migrant accommodation as a result of protest activity.
Are we content on that basis to close the petition?
Members indicated agreement.
I thank the petitioner, but they will understand from the evidence received from Police Scotland that the required protections are—I hope—in place.
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