Tick-borne Diseases (Treatment) (PE1662)
The next agenda item is consideration of continued petitions. The first petition for consideration is PE1662, by Janey Cringean and Lorraine Murray, on behalf of Tick-borne Illness Campaign Scotland, on improving treatment for patients with Lyme disease and associated tick-borne diseases. The petition calls on the Scottish Parliament
“to urge the Scottish Government to improve testing and treatment for Lyme disease and associated tick-borne diseases by ensuring that medical professionals in Scotland are fully equipped to deal with the complexity of tick-borne infections, addressing the lack of reliability of tests, the full variety of species in Scotland, the presence of ‘persister’ bacteria which are difficult to eradicate, and the complexities caused by the presence of possibly multiple co-infections, and to complement this with a public awareness campaign.”
The committee has received a submission on the petition from the Scottish Government and some submissions from the petitioners that detail their criticisms of the National Institute for Health and Care Excellence guidelines that are in place, respond to the round-table evidence session that was held last September and provide an update on international developments over recent years. The committee has also received written testimonies from the petitioners and members of the public that detail their personal stories about Lyme disease and co-infections, as well as a submission from Dr John S Lambert, who is a hospital consultant and university professor in medicines and infectious diseases.
Do members have comments or suggestions for action?
When we took evidence on the subject, I was struck by how debilitating the disease can be. It transpires that a cousin of mine who works in forestry contracted Lyme disease recently and has had to give up work. In the evidence, we also heard about the disparity of opinion between practitioners on whether Lyme disease can come down from the Highlands. We have heard evidence that it can exist across the board.
It is a very strong petition. I suggest that we write to the Scottish Government to raise the concerns that the petitioners have raised in their submissions. I note that the Royal College of General Practitioners has not responded to the correspondence that we sent to them. Can we give it a little dunt and chivvy it along to answer the questions that we asked?
Yes. Even if the RCGP says that it has not considered the issue, that will be interesting.
We have received a lot of submissions and personal testimonies, as well as hearing from a number of experts in the field. One of the themes is that the problem is about not just Lyme disease but other tick-borne diseases, and the system is not geared up to deal with its complexity. I do not pretend to understand all the technicalities, but some people have said that, because people did not know what to look out for, they got a diagnosis only very late and, as a consequence, their illness was even more debilitating.
I have picked up that the NICE guidelines are not up to date. There is also a sense—I do not know whether this is true—that people who are unwell are not being believed and there is a shift from diagnosing to looking for other issues.
I agree. I have a friend who has finally been diagnosed with Q fever after at least 10 years of going back and forward to different doctors and conditions being misdiagnosed. The convener is absolutely right to say that people are not being believed. In cases that are mentioned in many of the submissions that we have received, if the disease had been picked up a lot earlier, it would have been a lot easier to treat it.
I agree with Brian Whittle’s suggestion that we write to the RCGP and the Scottish Government. A lot of good work is taking place on prevention and awareness, some of which we heard about when we took evidence in our round-table session, but it may be that not so much work is being done on the diagnostic and treatment side. That may be what we need to concentrate on.
There seems to be a lack of confidence in the tests that are applied.
Absolutely.
I agree with the statements of my colleagues. At a previous meeting, I posed a question about a public information campaign, but I note that the British Veterinary Association’s submission of 13 September says that it is still not happy that the public campaign is out there. I would like us to write to the British Veterinary Association again to determine what is happening, because it has highlighted the issue.
Is it for the Scottish Government to run the public information campaign that the BVA has asked for?
That is my point.
It seems eminently sensible to have such a campaign. How do we keep people safe and prevent the disease? None of us is an expert on the technicalities. The medical profession is clearly wrestling with this hugely complex issue, but there is a sense that, in some ways, the system is not recognising that, even though the experts are at least partly telling us that the issue is complex and more work needs to be done. Perhaps we should ask the chief medical officer what they are doing to get together the people who really understand that there is an issue.
Yes. I also suggest that we bring NFU Scotland and Scottish Land & Estates into this.
There are lots of groups that should be involved in a public awareness campaign. I have been reminded that the British Veterinary Association said that it wants the Scottish Government to lead on such a campaign, which would make sense. We can pursue that with the Government.
Yes—we can apply some pressure. I would like that to be included.
We recognise that there are still significant concerns about people properly understanding the issues that the petition raises and that the petitioners want the issues to be looked at more urgently, including through an awareness campaign by the Scottish Government. We appreciate how busy the Royal College of General Practitioners will be, but we are keen to hear from it. Even if it simply says that the issue has not been flagged up to it in a significant way, that will be useful.
Is that agreed?
Members indicated agreement.
Permitted Development Rights (Conservation Areas) (PE1688)
The second continued petition for consideration is PE1688, by Alastair Ewen, on behalf of Westerton garden suburb residents association, on permitted development rights in conservation areas. The petition calls on the Scottish Parliament to urge the Scottish Government to review the permitted development rights legislation, which the petitioner believes impacts unfairly on residents of conservation areas and listed buildings in Scotland.
The committee wrote to the Scottish Government about its continuing work in implementing the Planning (Scotland) Act 2019, and its response advised us that a consultation on planning performance and fees was launched on 18 December 2019. The consultation recognises that
“Concerns have been raised recently about the requirement to submit an application for planning permission for carrying out alterations to a property which would have otherwise ... been carried out under permitted development rights.”
It states:
“We propose that where applications are submitted under categories 2, 3, 4, and 5 for developments in conservation areas which are required because of the restriction on permitted development, then only half the fee would be payable.”
Do members have comments or suggestions for action?
I can see where the petitioner is trying to go with the petition, and he has a point. However, conservation areas are there for the conservation of areas—obviously. The Scottish Government has said that it will publish new fee arrangements in quarter 2 of 2020, but I do not think that we have had any news on what will be in those arrangements. If the information is going to come out, perhaps we should wait for it.
There is recognition that there is an issue. Our desire to conserve architectural heritage means that people who happen to live in conservation areas end up having to pay more than people in other areas to do basic things, which is felt to be unfair. The consultation clearly recognises that. The issue is whether the suggestion that such people should have to pay only half the fee is fair.
I wonder whether we should close the petition on the basis that the Scottish Government is consulting on the matter, but flag up to the Scottish Government the concerns have been expressed through the petition. We could also encourage the petitioner to engage with the consultation. I think that it will close this coming Friday—or did it close last Friday? It seems that it was last Friday. The timing of that is unfortunate. However, we could certainly write to the Scottish Government and flag up the petitioner’s concerns on his behalf. That would be fair. He might have engaged with the consultation anyway, if he has been alive to it.
I note that the petitioner has been in touch with me as well, and I agree that that is the flavour of what I have heard from him. There is recognition that something has to be done.
I support the proposal that we close the petition and flag up the petitioner’s concerns, as the convener suggested. We will see what comes out of the consultation.
Do we agree to close the petition under rule 15.7 of standing orders on the basis that the Scottish Government is undertaking a consultation on planning performance and fees, which includes issues such as permitted development rights?
Members indicated agreement.
The petitioner will have the opportunity to return to the matter in a year’s time if they feel that there has been no progress. We thank him for his engagement with the committee and the time that he has taken to raise these important issues.
Community Hospital and Council Care Home Services (PE1710)
The third continued petition for consideration is PE1710, by Edward Archer, on community hospital and council care home services in Scotland. The petition calls on the Scottish Parliament to urge the Scottish Government to review the provision of services for the elderly and long-term sick in community and cottage hospitals as well as in council care homes across Scotland.
Since our previous consideration of the petition, in September 2019, we have received submissions on it from the Scottish Government, the Glasgow city integration joint board, Health and Social Care Scotland and the petitioner. The submissions are summarised in our papers. Do members have comments or suggestions for action?
I think that we should refer the petition to the Health and Sport Committee so that it can form part of its continuing discussions. If we looked at the matter separately, there could be some issues. Brian Whittle, as a member of that committee, might want to comment.
As members know, I and David Torrance sit on the Health and Sport Committee, and we are looking at the topic, so the petition is pertinent. The sector is under extreme pressure, as has been highlighted by the petitioner, and I think that the Parliament will continue to wrestle with the topic.
I agree with Maurice Corry that the best way forward would be to pass the petition on to the Health and Sport Committee with the evidence that we have received on it, because that committee is best placed to deal with it. We can add it to the work that we are doing.
We are grateful for the number of responses that we have received on the petition. In particular, the response from Glasgow is very considered.
The argument is that there should not just be provision for people in their home or in hospital. How do we find places in between those two options that meet their needs? I am quite reassured that there seem to be quite a lot of initiatives in different places that are taking a step-down approach so that there is not bed blocking but people are not forced to go back home when that is not suitable; instead, there is a space where they can be properly assessed.
There is clearly a lot of work to be done on the topic and I think that we are keen for the petition to be fed into the work of the Health and Sport Committee, which is looking at the future delivery of social care in Scotland. I think that we agree that we recognise the important and challenging issues that are involved, which the Health and Sport Committee is also very much aware of.
Do we agree to refer the petition to the Health and Sport Committee, under rule 15.6.2 of the standing orders, so that it can be considered as part of that committee’s work to explore the future delivery of social care in Scotland and what is required to meet future needs? We hope that the element that is raised in the petition will be a strand of that committee’s work. Is that agreed?
Members indicated agreement.
We agree to close the petition. We thank the petitioner for highlighting the issue—[Interruption.] Sorry—we are referring the petition. I am having a good start to the day. As we have agreed, we will refer the petition to the Health and Sport Committee, and we hope that the petitioner will find that committee’s attention useful in addressing their concerns about the issue.
09:15Mosquito Devices (PE1713)
The fourth continued petition is PE1713, on banning the use of mosquito devices in Scotland. It was lodged by Amy Lee Fraioli MSYP and Kit McCarthy MSYP on behalf of the Scottish Youth Parliament.
The petition calls on the Scottish Parliament to urge the Scottish Government to ban outright the use of mosquito devices in Scotland in order to uphold children’s and young people’s rights.
Correspondence that we have received from the Scottish Government states that it opposes the use of mosquito devices and intends to consult specialists in relevant fields and give further consideration to the implications and practicalities of banning mosquito devices.
Do members have any comments or suggestions for action?
I have huge sympathy with the petition and have dealt with some members of the Scottish Youth Parliament on the issue. It is unfortunate that, although the Scottish Government does not support the use of mosquito devices, they are still being used in various places despite the fact that they can be extremely upsetting for young people. I am also disappointed that the United Kingdom Government is not seeking to ban or restrict the use of the devices.
The Scottish Youth Parliament as a whole should maybe take the issue to the UK Parliament, as it has the responsibility for it. I do not think that we can take the petition any further. Although I have great sympathy with it, we have no option but to close it.
It is clear that, although the Scottish Government recognises that it is for the UK Parliament to make the decision on whether mosquito devices should be banned, it is prepared to look at the question that we asked it before, which was whether there is a way into the issue for it on health grounds. There is space for the petitioners—or, indeed, the Scottish Youth Parliament, if it so chose—to continue dialogue with the Scottish Government on that element.
Absolutely.
Do members agree to close the petition under standing order rule 15.7, on the basis that the Scottish Government will consult specialists and give further consideration to the implications and practicalities of banning or limiting the use of mosquito devices? Members should note the point that Gail Ross made about highlighting to the Scottish Youth Parliament that it may want to pursue the issue with the UK Parliament. It may already have done that, to be fair—it might already be engaged in that discussion. Do we agree to close the petition?
Members indicated agreement.
We thank the petitioners for lodging the petition. If they so desire, they have the opportunity to raise the matter again in a year’s time, although I know that one of the young people involved is no longer a member of the Scottish Youth Parliament and will have moved on. We thank them very much for engaging with the committee.
Primary Hyperparathyroidism (PE1726)
The next continued petition is PE1726, on primary hyperparathyroidism, lodged by Fiona Killen, calling on the Scottish Parliament to urge the Scottish Government to raise awareness, particularly among GPs and other medical practitioners, of the symptoms, diagnosis and effective treatment of primary hyperparathyroidism caused by adenoma; to provide access to minimally invasive surgery in Scotland for the treatment of the condition; and to provide funding for research into PHPT caused by adenoma.
Since our last meeting, submissions have been received from the Scottish Government, the Society for Endocrinology, Parathyroid UK and the Royal College of General Practitioners Scotland. Our briefing paper summarises their responses.
Do members have any comments or suggestions for action?
This is a really interesting petition in that it is another one that calls for the upskilling of GPs. There seems to be a series of petitions being lodged that mention a lack of recognition of a condition in the wider medical community.
We are back to the question of writing to the Scottish Government to ask it what it can do to promote knowledge of a particular condition in GP surgeries. I wonder whether we could do a wider piece of work on promoting a number of conditions in GP surgeries and the wider medical community. Many different conditions are involved, but there seems to be the same basic issue of a lack of understanding and knowledge of them.
We have had conversations with GPs about other matters, and I wonder how much pressure they are under as generalists. They are quite right to say that they are generalists. What support can be put in place to support them to deal with that in a world in which everything is increasingly complex and conditions are coming to public attention in different ways? I think that it would be worth writing to the Scottish Government to ask about the work that it is doing on that.
If we are going to take that tack, we could ask about the wider piece of work that is currently being done on healthcare technology and a new technology collaboration platform that could hold such information. I am trying to think logically. Doctors cannot simply be taught about all these conditions, because, as you have said, they are generalists. I have seen the work that is being done, which I think Mr Huggins is leading. It would be worth finding out whether the plan is, as part of that work, to set up a reservoir of knowledge that such things can be fed into and that GPs could have access to.
Is the issue whether the Scottish intercollegiate guidelines network and NICE guidelines are not sufficient to help GPs? It has been suggested that the Scottish Government could be asked whether it will consider a survey of GPs to get their understanding of the condition and to find out whether the issue is that they do not have a reference point that gives them enough information on what the signifiers are. I am conscious that we are straying into clinical understanding that we cannot possibly appreciate, but I wonder whether what exists is not sufficient when GPs are looking for advice or support in identifying something.
That would be a positive thing to do. However, if we are going to do that, we should tag on other questions about GPs’ understanding of things and how they would access knowledge of conditions.
We can ask the Scottish Government whether it will undertake such a survey. I presume that we would say, in that correspondence, that the committee is conscious that there are a number of such issues. Given the support that GPs need, I do not think that we want to put stuff at their door if there is no back-up that they can draw on to help them.
We recognise that there is an issue. We can also ask the Scottish Government about the research into PHPT.
I have a constituent in whom the condition was not picked up for a year, and it led to certain disabilities. My constituent spoke to the GP about getting more guidance on identifying the condition.
You are absolutely right: a survey of GPs would be excellent. As has been said, they are generalists. Although they try to be detailed in their diagnosis, very often it is obvious that they do not have the back-up for that. The Scottish Government should look at that and at whether such situations occur frequently.
Okay. Do we agree to write to the Scottish Government to ask it about the work that it is doing in the area, whether it would consider a survey of GPs and whether it is looking at funding for work on PHPT?
Members indicated agreement.
Care Charges (Protection of Crofts) (PE1729)
The next continued petition is PE1729, by John Maciver, on legal protection of crofts from local authority care charges. The petition calls on the Scottish Parliament to urge the Scottish Government to ensure that crofting tenancies are exempt from local authority financial assessments for care charges. The petition was last considered in September 2019.
Do members have any comments or suggestions for action?
When we considered the petition previously, we said that it is a difficult issue and, to be completely honest, I am not sure that the submissions that we have received have made it any clearer. The petitioner said that he is disappointed that Highland Council has not responded. I, too, am disappointed with that, given the situation on Skye that we have heard about.
The Scottish Government has established the crofting bill group, which is tasked with looking at crofting law reform. Our paper points out that the Government has said that, in order to establish the standard security provision for croft tenancies, those tenancies need to be seen as assets. There is a difference of opinion between the petitioner and the Scottish Government on whether the sale of a croft tenancy adversely impacts the system of crofting. That is a subjective issue.
Western Isles Council said that it simply follows the current guidelines and, in essence, treats everything on a case-by-case basis. We need to get the Scottish Government’s views on why there are such discrepancies between local authorities. Does the Scottish Government need to provide more clarity to local authorities that have crofting communities on whether crofting tenancies should be seen as assets?
As I have said previously, I was a member of the Rural Economy and Connectivity Committee when it carried out a crofting inquiry, and even Queen’s counsel gave us evidence that crofting law is one of the most complicated legal systems that they deal with. We need to seek further clarification for the petitioner.
I was struck by the petitioner’s comments on the distinction between someone who has decrofted and has a property and somebody who has built what used to be called an improvement—a croft house was seen as an improvement on a tenancy. There is a distinction between people who own their house but who are tenants on a croft and those who are owner-occupiers. It feels as though there is a bit of a misunderstanding about that. I am sure that plenty of people would argue that there is an impact on the sustainability of crofting. There are powerful points on that in the evidence that we have received.
I think that the petitioner feels that Argyll and Bute Council’s approach makes the most sense, because it deals with the issues on a case-by-case basis. We cannot discount the financial pressure on local authorities. If they can count something as an asset in one place, why cannot they count it in a crofting setting? However, the two things are distinct, at least in that regard.
We should write to the Scottish Government, asking for clarity. It might say that it is dealing with the issue through the crofting bill group, but we would want reassurance that it accepts that clarity is required, because it seems as though crofting tenants in different areas could be treated quite differently despite the fact that the crofting legislation is supposed to be coherent. We could also ask the Government whether it plans to update the capital assets section of its guidance.
Perhaps we could get the Scottish Government to engage directly with the petitioner’s concerns, which are pretty clear. Is that agreed?
Members indicated agreement.
09:30
I remember some of these cases from when I was on Argyll and Bute Council. We took decisions case by case because there are so many variables. Sometimes, the tenant was not there and someone else was looking after the croft. How do we deal with the situation when the tenant is not really in the area?
There were masses of those cases, which is why we took the line of going case by case. We did not have many cases, but that is how we dealt with them.
Absolutely. The very fact that crofting has its own legislation shows that it is a unique way of life and must be protected.
We are agreed to write to the Scottish Government in those terms.
Home-educated Children (Registration) (PE1730)
The next continued petition is PE1730, by Kenneth Drysdale, on the registration of home-educated children in Scotland. The petition calls on the Scottish Parliament to urge the Scottish Government to conduct an urgent review to identify children who are not registered with an education authority and are being denied the basic human right to access an education suitable to age, ability and aptitude.
Since the publication of the meeting papers, the petitioner has provided an additional submission, which provides information on how often local authorities have used their powers under section 37 of the Education Act 1980 to issue a notice to parents following concerns that a child has not received efficient education. That submission has been circulated to members.
Do members have any comments or suggestions for action?
This is quite a complicated petition. We probably all have constituency cases in which home schooling has become the only option in the circumstances. How those children get to interact with other children has always been my concern.
The petitioner makes a strong point. Because a revised home education guidance publication is in the offing, we could write to the Scottish Government in the first instance, seeking clarification about the timescale for delivery of that guidance. We could also write to the Convention of Scottish Local Authorities, seeking details of local authorities’ positions and what they might have in place to make sure that they are fulfilling their statutory duty.
We could therefore do a couple of things to move the petition on. We need to pursue it.
I agree with that.
Does anyone else have anything to suggest?
I am looking at the petitioner’s submission of 11 February, which details the responses of five local authorities. South Ayrshire Council has concerns about 21 children, which is quite a high number. There is obviously some inconsistency, so I support what my colleague has just said. We need to write to the Scottish Government and COSLA to get some information.
Through my own experience, I can understand why, in certain circumstances, parents actively choose to home educate their children. It may be because they feel that they have no choice, because their child is struggling in the education system, or because the education system is not sufficiently responsive to or supportive of them. On the other hand, I spent a significant part of my professional life as a teacher trying to make sure that young people got the education that they were entitled to, sometimes when there was not the family support to get them into school.
Those are two completely different things, but there is a responsibility to ensure that a child has access to the education to which they have a right. There is an important balance to strike in how that is done, and I think that we are also seeking reassurance on that. That is my sense of what is behind the petition. No one would suggest that we do not support home education, but the importance of a young person’s education is also part of it.
We are agreed to write to the Scottish Government and COSLA in those terms.
Pathological Demand Avoidance (Diagnostic Toolkit) (PE1732)
The next continued petition for consideration, PE1732, which was lodged by Patricia Hewitt and Barbara Irvine, is on a toolkit for working with the pathological demand avoidance profile of autism spectrum disorder.
The clerk’s note provides a summary of the submissions that have been received since our previous consideration of the petition. Notably, the National Autistic Society Scotland sent a second, updated submission on 28 January 2020 following a change to its stance on pathological demand avoidance. Members might also wish to note that Rhoda Grant provided a written submission to the clerks yesterday, a hard copy of which we have been provided with.
Do members have any comments or suggestions for action?
When we first considered the petition, there was agreement that there seemed to be a lack of a cohesive understanding of pathological demand avoidance from one area to another. In its submission, the National Autistic Society says that it believes that the understanding of autism is poor, and there is agreement that PDA is on the autism spectrum. Once again, a theme comes through of a lack of understanding in the medical world, or at council level, that PDA is a condition. The wider worry is the idea that autism is not particularly well understood and recognised.
There is a large piece of work to be done here, but I am not sure that we can take the petition any further, because we have had a limited number of responses and the action that we can take is limited. I think that the petitioners have raised an extremely important subject but, now that we have considered the petition, I am not sure that there is much more that we can do.
I absolutely agree. The petitioners have done a lot of good work to get PDA recognised. In its response, the National Autistic Society said that PDA is seen to be on the spectrum. However, Brian Whittle is right—the understanding of autism is poor. Whether the understanding of autism, rather than individual conditions, needs to be looked at is another question.
Given that we have already been advised that we will not be able to make any progress on the petitioners’ ask for a toolkit, I think that, unfortunately, we have take the petition as far as we can.
I was struck by the submission from the National Autistic Society. It is not the case that people do not recognise that some people on the autism spectrum have particular features that mean that they could be described as having PDA. Clearly, the society’s job is to make the world as user friendly as possible to people with autism and to allow people to have a proper understanding of the different ways in which it might be expressed.
Our paper states:
“Within the research, there is some consensus that the term PDA may be a useful term to flag up a range of co-occurring difficulties for many people ... and that any approach should be personalised to the needs of the individual.”
It is not the case that there is no recognition of the fact that there are particular features of PDA. The issue with autism is making the approach as person centred as possible, so that people do not generalise and say, “Oh, you don’t fit into that, so we’re not going to deal with you.” We should deal with people according to the way they are.
From that perspective, I think that I agree that, as far as what the Public Petitions Committee can usefully do is concerned, we have flagged up and highlighted the issue. It is clear that the National Autistic Society and others are aware of it and that their approach is not that people whose autism is expressed through PDA should be disregarded but that the condition should be seen as falling within the umbrella of autism.
The submission from the National Autistic Society suggests that there is an acceptance of the idea of a toolkit but, as you say, it is important to consider individual cases. That must be included in the overall approach. Clearly, there is Government support for the toolkit and a consensus that it is within the spectrum. I do not think that there is much more that we can do. I feel comfortable that the issue has been recognised and that work is being done on it. It is not a question of a one-size-fits-all approach.
I think that we should acknowledge the impact of the evidence session that we had. The very fact of having the petitioners in front of us increased awareness of their concerns. There has been engagement, and we do not expect that engagement to stop.
The suggestion is that we close the petition under rule 15.7 of the standing orders, on the basis that there is limited support for the actions that are called for in the petition, but state that we want attention to continue to be paid to the experience of people with autism. I have no doubt that the National Autistic Society Scotland, other groups representing people with autism in Scotland and the campaigners on PDA will ensure that that will happen anyway. Do we agree to the suggested action?
Members indicated agreement.
We thank the petitioners for engaging with the committee and for highlighting their concerns. Of course, if they come to feel that there has been unsatisfactory progress, they can submit a petition on the subject again in a year’s time.
Weight Loss Surgery (Access) (PE1739)
The final continued petition for consideration today is PE1739, from Tom Aldridge, on improving access to weight loss surgery.
Since lodging the petition, the petitioner has contacted the committee clerks to indicate that he has been advised by national health service officials that the policy that the petition is seeking to change has been amended. The Scottish Government response to the committee confirms that.
Do members have any comments or suggestions for action?
Given that the petition seems to have been successful and that the petitioner has got the result that he wanted, we should congratulate him on that and close the petition.
Do we agree to close the petition under rule 15.7 of the standing orders, on the basis that weight loss surgery is available to any patient who local clinicians feel may benefit from it when other weight management interventions have been explored?
Members indicated agreement.
We thank the petitioner for his engagement with the committee. Obviously, if, in a year’s time, he does not feel that there has been progress on the matter, he can submit another petition.
We will have a brief suspension before we move to the next item.
09:43 Meeting suspended.Next
New Petitions