 If you can call meeting to order, I welcome everyone to the 12th meeting of the Public Petitions Committee in 2018. We have apologies from Brian Whittle. Morris Corey is attending as committee substitute. The first item and agenda today is the consideration of new petitions. The first petition for consideration is Petition 1692 on inquiry into human rights impact of Gyrfect policy and data processing. This petition was lodged by Leslie Scott a Alasun Proys a ffraith o ddefnyddio cwestiynau a FWM, ac yn gwnaeth i'r adnod o gyflwdadech Voice Ru. Can I welcome Liz Smith MSP, pensioner, who is in the gallery to hear this evidence? As members will be aware, I am the Deputy Convener of Education and Skills Committee, and that committee is currently involved in the scrutiny of the Children and Young People Information Sharing Scotland Bill. This is the role of the convener to facilitate debate, so when considering the petition this morning, I shall chair I will leave it to my colleagues to ask questions. Can I welcome Leslie Scott and Alison Price to the meeting? You have the opportunity to make an opening statement of up to five minutes, after which we will move to questions from the committee. Thank you. We would like to split the five minutes between us if we may. Good morning first thank you to the committee for inviting us here. The young ME sufferers or times trust is the only national ME charity dedicated to children and young people with a neurological disease ME and their families. In recent years times trust has seen an escalation across to our advice line over families being referred and situations escalated to child protection services. Of the over 200 families facing such a situation who have contacted us, not one has been found to be at fault on further investigation. Yet these interventions can cause catastrophic trauma to those families involved, whether they be families with ME or not. Some families never recover from the overbearing and traumatic experience and become terrified of approaching services for help, something that the evidence submitted to the postcard from the fringe event last year confirms. What this petition is asking for is an independent public inquiry into historic and current practice under the GERFEC approach. As a spice briefing put it, this petition relates to the current legal situation rather than the prospective legislation from the 2014 act in 2017. The 2016 ruling from the UK Supreme Court found that aspects of the 2014 act were unlawful and breached article 8 of the Human Rights Act. As a result, parts 4 and 5 of the act were unable to be implemented, yet the Scottish Government continues to encourage local authorities, health boards and other organisations to prepare for implementation of the act by continuing to implement getting it right for every child. However, parts 4 and 5 of the 2014 act are the getting it right for every child approach. It is as if the UK Supreme Court ruling had never happened. Well-being is a concept that lies at the heart of GERFEC. Despite the Supreme Court ruling that well-being is undefined and that the scenario indicators are themselves undefined and in some cases notably vague, well-being remains in far too many cases the threshold at which practitioners are gathering and sharing information on families. When families object to a question such an approach, they are often escalated to child protection procedures on such spurious bases as non-engagement. The UK Supreme Court judgment records that personal autonomy is an important principle underlying the guarantees of the ECHR, that the family is the natural and fundamental group unit of society as an entitle to protection by society in this state. GERFEC can practice the antithesis of these principles and a full public inquiry is needed to reveal and correct the on-going assault on family life. I would like to reiterate, Leslie, thanks for the opportunity to come before the committee. It is hard to condense what has become our life's work into a few minutes, to be honest, but home educators have been at the sharp end of this scenario stick right from the outset. We have evidence of multi-agency professionals getting it wrong and actually acting out of the law. Home education may well be a minority activity, but when the rights of minorities are trampled on, the rights of everyone is, that is a basic founding principle of human rights law. Home educators have conducted a survey recently that found that the major drivers for it were unmet additional support needs, including chronic illness and disability, safety issues in schools and the GERFEC cult, which has also seen parents abandoning nurseries and other care settings due to excessive data gathering, which amounts to profiling. For example, background checks on home educating parents have absolutely no legal basis, yet have found their way into local policies, so that entire families have had their health, police and social work records accessed without their knowledge, which is contrary to national guidance, the GDPR and convention rights. I wrote to the education directorate in mid May to raise serious concerns about this, but I have had no reply whatsoever. Being ignored by public bodies is quite common place, we have found, and even lawyers' letters are now going unanswered. You might say that that is non-engaging professionals. The problem is that they are all working to practices and policies that have remained uncorrected since the Supreme Court judgment. That includes the 2014 child protection guidance, which shifted the threshold for data processing without consent. It was a series of background deals that we found from the minutes that caused the threshold to be dropped to a subjective notion of wellbeing from significant harm in 2013. That was a year before the Children and Young People Act was passed, and three years before the data processing provisions came into force, they never did, of course. The public were deliberately kept in the dark, because it might have an adverse effect, that was also in the minutes. We sounded the alarm at the time, but were completely ignored and excluded from all the debate. Basically, the Government needs to get its story straight. Either GERFEC data collection and sharing is consent-based below the risk of significant harm, or it isn't. If it is, that is absolutely fine, and the higher GDPR threshold will then apply. If it isn't, we have actually been misled, and there still needs to be a legal basis that satisfies article 8.2 of the European Convention. Well-being doesn't cut it, as the Supreme Court has said. Human rights are self-defined, whereas scenario wellbeing outcomes are state-dictated, as parents have found. They are open to dangerously subjective interpretation. Families have also been denied remedy for wrongdoing, having been told that it was all legal when it actually wasn't. Even if they had a spare £15,000 for judicial review, legal time bars may well have kicked in. Meanwhile, inaccurate information is still being pedalled by public and third sector bodies, which adds insult to injury. I should stress that our evidence is comprehensive. It comes from public records, freedom of information responses, families' subject access requests, correspondence and recordings. We need an independent inquiry into this debacle. There is also a real need for victims to relate their own experiences privately to MSPs rather than to be paraded in the national press before another assault on human rights is voted through. I move on to some questions. Thank you, convener. Good morning, Leslie. Good morning, Alison. In your petition, you referred to numerous public meetings that have been held since 2013. Can you give us some detail of those meetings, who was present, who arranged them and were their Scottish Government representatives present? The Nota NP campaign, which we are heavily involved in, organised the meetings as an awareness-raising exercise for the public into what was actually happening on the ground. Leslie and I have both spoken at these meetings. I couldn't actually tell you offhand how many there were, but there were several and they were all over Scotland and they were very well attended. Were there any Scottish Government representatives present? No. They were welcome to attend, but they didn't come. Were they invited? They were open meetings. Yes, they were open meetings for anybody who wanted to go. I believe that John Mason came to one that we ran in Cath Card. Anybody, if they wanted to go, they could have gone. Were there any meetings there? There must have been between 1340, I would guess. 1340, and how well attended were they? Very well attended. As we went on, we would get between, some of the cases, over 80 people. There were over 100 in South Africa. It varied depending on where we were. We went all over Scotland, we went right up to the north and right down to the borders, depending on where we went. What was the result of the meeting? Was there any action taken at the end of the meeting? We compiled evidence from families who attended the meeting. Several of them spoke about their experiences. They spoke publicly to a certain extent but did not want to compromise their children's privacy. They did send us details of what had happened to them afterwards, which we kept as evidence. I gave families an opportunity to to know that they were not alone but to give them the opportunity to speak to people about what was happening to them and look for ways to counter what was happening. In a lot of cases, it was actual harm in terms of their data being shared and the consequences of that. I dealt with one family who were referred four times in one academic year to the children's panel. Cases of that mean the effect on the family of that. We are talking about a sick child involved in that. The effects of that is trauma in a lot of cases. Thank you. Angus Donald. Thank you. Cymru. Good morning, Leslie. Good morning, Alison. Just following on from Rona Mackay's question, you have stated that at all these meetings since 2013, you heard a bit unlawful data collection and sharing, which has led to a loss of trust in services among families. You have given us one example just now, but are there any other specific cases without mentioning any names or details that you can give us with regard to the circumstances around the data that has been shared? I can think of one very recent case, a family who had been referred for the first time to social work, allegedly on child protection grounds, which were not because it was based on wellbeing concerns, because they declined the services of a health visitor that they did not get on very well with. The health visitor then alerted housing because he lived in social housing in the east end of Glasgow, and housing came to inspect her house, which she found violating, humiliating. The children's panel had already thrown this out in previous years, but it escalated further. There was such a determination to build a case against this family, whose only wellbeing need was a bigger house because they were overcrowded, but that has not appeared. There was no practical help whatsoever. Eventually, it escalated to an initial conference at which I advocated. I was delighted to say that social work maintained the threshold that should be maintained, which was a risk of significant harm, and no further action was taken. However, it was totally traumatising for the family who have young children—they have six children too—to whom they have grown up. It was very traumatising for the family, and they really want their voices to be heard. Can you expand a little on what people have told you why that has led to a loss of trust? I am certainly with a charity that deals with neurological disease ME. In that situation, what you are finding is that information from parents has not been given any weight, but the information from any professional involved is repeated not just with people with ME. However, part of the process is that you do not have to repeat your story to professionals when you are taking one, and they repeat it and share it among themselves. However, if the information is wrong, it is the wrong information that is being shared and repeated. Parents are not given the chance to correct it. They lose confidence in the process and practice around them, and they lose trust because the resulting procedures and actions that are put in place are not helping them or harming them. I was at one of your meetings in East Lothian at the time, which I found very useful. What I would like to know furthering from Rona Mackay's question is the 90 submissions of written evidence that you got. Were they part of those meetings or were they separate, and how did you go directly to people, or did people come to you? That was a separate thing that Alison and I set up. That was the time of trust in Scottish local education forum. We were excluded from giving evidence to the Education and Skills Committee at the time, so we decided to take our own evidence because parents were not given a chance to tell their stories, which is why we feel that we need a public inquiry. We set that up on our own, and we put out the word that if you have a story where your information has been shared illegally, there is an experiential need that you would like us to know due to GERFIC, then give it to us, and we set up a website. We had a public meeting as well, so we got floods of evidence then through the website. Your evidence gathering was directly through a plea through the website? Yes, we put it through not only a person, but we put out an email and Facebook post inviting people to give evidence to us. It was a direct request to parents and families to give us their experiences. I am slightly puzzled. You referred to the intense engagement that the Deputy First Minister committed to, and you questioned the extent to which the organisations engaged by the Scottish Government fully reflected the range of views in those matters, or focused on organisations that were supportive in principle of the wellbeing agenda and compulsory name person scheme underpinned by GERFIC and the curriculum for excellence. Are you supportive in principle of GERFIC and the curriculum for excellence? No, because we have seen what is resulting from the practice on the ground, so no, we are not. Anybody would say that getting it right for every child is great, but there is no definition of it and there is no definition of right. That is the problem. Once the state decides what right, what wellbeing means, we have a major problem because it is open to such wide interpretation. Did your organisation make an effort to contact the organisations that the Government was engaging with to tell them about what was happening? Yes, we work quite a lot with the various third sector organisations that support children and families, but they all seem to be bought into it apart from clan child law, which expressed the same concerns that we did about the law, because we had a very significant legal opinion from someone who instructed in an important case in Haringey just before the threshold was lowered in Scotland. We did point that out to all the other organisations, to the Government and to MSPs, but really that was dismissed and it turned out that the legal opinion that we submitted in the first stage of the consultation to the 2014 act, the lawyer that we commissioned to write it, used exactly the same case law and the same arguments that were finally agreed with by the Supreme Court. Well-being sits at the heart of GERFEC, and as the Supreme Court said, wellbeing is undefined. The scenario is used to define it, but the scenario is undefined. It is totally subjective, and the evidence that was given to the Education and Skills Committee by many practitioners, there is no universal definition of wellbeing that everybody accepts. You get groups of people within an organisation who maybe have a collective understanding within their own group of what it is, but you take it out with that and then you're met with another definition of it. You can't base anything on something that's so totally undefinable. So, just to clarify, you are supportive of GERFEC, but is the wellbeing aspect of it that you said in the question? We're supportive of obviously promoting safeguarding the wellbeing of children, and then who wouldn't be? The Supreme Court was supportive of that. What we're not supportive of are the measures that are being implemented to direct parents to promote the wellbeing in a specific way. That's where the problem lies, and that's why the judgment went the way that it did, but I don't want to get bogged down in the legal terminology. Sorry, the judgment was referring to the data protection, data sharing element of it. It also referred to human rights and how human rights interact with data protection. Morish Corry. I thank you. Good morning, ladies. In the petition you mentioned, and I quote, that many families were unaware of the roll-out of the scheme, let alone the existence of any single point of contact in so-called trial areas. Do you have any view as to why people were unaware of the scheme? We have minutes from a meeting that showed that it was rolled out purposefully, quietly, so that it could be implemented before families were told about it. It was to be embedded across services before families were told about it. This is in Government minutes. Well, the Highland pilot was much lauded, but nobody actually knew who their name person was or what the point of contact was. What they were finding was that they were having services forced upon them that they didn't want, and they were meeting gatekeepers to services that they did want, and that's where the problem lay, really. We did a meeting up in Highland in Inverness when you talked to people there, and that was a few years after the supposed implementation of it, and they had no idea. They just didn't know what a name person was. They'd never met one. If a name person is meant to be your central contact, if you have an issue or a problem and you don't know they exist, how can you approach them with a problem? Did many people know who their name person was? No, they didn't even know it existed. In fact, as a home educator, I know that families have actually had to put in freedom of information requests to find out who the point of contact is for home educating families. We have had redacted information pack just giving us a director of children's services, and there is supposed to be a point of contact that there always has since 2007 from statutory guidance on home education, but we still don't know who they are. Rona, you want to come in briefly? Just on that point, did you contact the local authority in Highland who clearly did know what the name person scheme was, and did you put your concerns to them? Yes. Various people put in complaints, but they were never recorded anywhere. We are still finding with certain local authorities that, when parents put in complaints, they are not recorded as such and they are ignored. That means that the ombudsman cannot take on the case because the complaints system hasn't been gone through, but, if an authority won't accept something as a complaint, they have to then go to judicial review. There is no other alternative, so there is no complaint system, no acknowledgement that parents are complaining. That responsibility lies with the local authority. We would like to think so. Just to clarify one point there, the complaints that went into Highland Council weren't acknowledged, is that what you are saying? They weren't acknowledged by the head of services at the time who said that nobody had complained about it, which wasn't actually true because we have copies of complaints from parents to Highland Council that went unacknowledged and unresponded to them. We know that, as you have identified in your petition, the education and skills committee is the lead committee for the scrutiny of the children and young people information sharing bill. That committee has concluded that it can't give further consideration to the bill until it has an opportunity to scrutinise the accompanying draft code of practice on information sharing. What is your understanding of any progress on the code of practice and the membership of the expert panel set up to guide and oversee the drafting of the code? The situation that we are talking about is currently happening and has happened, so it is a historical situation and a current situation. What happens with the code of practice while it is important for going forward doesn't really affect this, because this is a historical and current practice that we are talking about. We want the wrongdoing that has happened in the past and currently to be acknowledged and addressed in some way so that parents have some sort of access to justice that has been denied them. Can I perhaps wrap this up and ask you how you envisage an independent inquiry? Would there should work and what its remit should be? Is there a standard that you would establish in terms of what that public inquiry would look like and what sort of timescale would you imagine it would be working to? We have discussed this and we feel that probably an independent QC with a track record in human rights would be ideal person to chair such an inquiry and to invite evidence from people who do know about this particularly, lawyers, because the law clearly is what's important here, human rights and data protection and how they interact. That's the bit that people are finding difficult and that's why the independent panel is struggling. If you read the minutes, which are partial really, you can see there's some tension there between the law and policy, which is obvious and I think that the committees have been wrestling with that too. It is a very specialised area. I've spent the past 15 years looking into it because I worked on the contact point campaign in England, which was eventually abolished in 2010. I also campaigned against the Snippers Charter, which applied the same thing to legitimate aim, to utilitarian measures to implement that aim. I don't think that we'd want to be at a long time, because obviously GERFEC has, in practice, been on the ground for quite some time now. Families have been waiting a long time for recompense, so I don't know what the shortest timescale we could look at, you know, practically would be, but the shorter, the better, I would suggest. Richard Bliflin will come to the conclusion. Can I just ask about the draft code, convener? Ms Scott, you talked about when Angus MacDonald asked you about the accompanying draft code of practice. Just in some of the evidence, I just wanted to pick up on that because the committee had concluded that it would not be able to reach a conclusion on the bill until it was able to consider the draft code. Can you expand on what you said? What we are asking for is an inquiry into historic and current practice. The code of practice and the deliberations over that are not affecting current practice because GERFEC has been in place for quite a number of years now across Scotland. There has been varying implementation. That was the whole purpose of the legislation. It was a consistency in implementation. It was not to introduce a new practice because that practice was already on the ground, so what we are asking for is an inquiry into that. However, the code of practice that comes out, whether the draft code looks like, is not affecting now or the historic situation, but those families need to be heard and they need to recompense, and the practices need to be brought to light. Do you believe that the bill should have been considered earlier? It should have been implemented as it was, but it was rolled out before it became, when the legislation came after it had already been implemented. Thank you very much for that. That has been an interesting exploration of the issues. I wonder if there are any comments or suggestions for action. In the first instance, convener, we need to contact the Scottish Government to seek its views on the action that has been called for. It would be helpful to write to the Information Commissioner's office to seek their views as well with regard to the petition. The point that we will be making to the Government is not about future solutions, but about what it will do to address the concern that practice took was driving certain behaviour that might not have been at that point legislated for. I think that it would be worthwhile to write to the Scottish Government with that. Did the Information Commissioner say anything else? The Education and Skills Directorate remains an unanswered document that Alison Perris had talked about. I do not know if there is anything that we can do to get that information that has been requested. The NSP has now taken that up with the directorate. She said that she would write to them. I have not heard back yet. In the correspondence, we feel that there is some simple not responding, which is quite different from responding in a way that you do not like, but simply not responding is a kind of frustrating thing in itself. If we can agree then, we write to the Scottish Government, we give them an indication of the issues that have been raised and ask them to respond to that. I think that underlining the point that this is not about the future and how that matter is going to be sorted, but what it is going to do to address and if it does think that there is a concern, it has been flagged up how it is going to address that and write to the Information Commissioner as well. Obviously, when those responses are received, you will have an opportunity to reflect on them and put a further submission to the committee. I thank you very much for your attendance today. I think that that has been a very useful session and I will suspend briefly until we allow the witnesses to leave the table. Can we move now to the next petition for consideration, which is petition 1691, on the review of the title condition Scotland Act 2003, submitted by Christopher R. Hampton on behalf of the Steering Group of Bowman's View. Members have a copy of the petition and the briefing prepared by Spice and the Clarks, which provides background on the title condition Scotland Act 2003 and notes that the Scottish Government has recently indicated to Spice that there is no current plans to change the law contained in section 64 of the act, as it applies to sheltered housing complexes or otherwise. I wonder if members have any comments or suggestions for action. I should say that I was a member of the Scottish Parliament when that was considered, and I think that there are quite interesting issues here about the conditions or the burdens that are placed in certain complexes and the inability to move to another factor. I think that particularly this idea that we need to get two thirds of the majority to be able to remove a factor is one of them. I remember at the time that it was highly technical and there was a lot of concerns and issues around that time in terms of protecting the characteristics of our sheltered housing. It is complex, but I think that it is something that I have found some of the argument in the petition quite compelling. I was surprised to see that the property owners can only vary the terms rather than remove them at all and that there were also minimum age requirements as well. I think that there is a case to take that forward. I think that judging by my case work, there is certainly a strong argument for the petitioner's viewpoint, but I am struck by the Justice Committee's report from 2013, in which it noted that the complexity of the current law can create barriers to switching property factors. However, in the response to the report from the Scottish Government, it came to the view that no change to section 64 is required, but I think that, clearly, it is time for them to look at that again, so I am happy to move the petition forward. I agree with Angus. I think that the petitioner raises important issues. I think that I have not realised the aspect of the effect of sheltered housing, but generally, on a more general level, there is a concern about factors and how democratic the whole process is to go about changing them. However, with regard to the petitioner, I think that it is time that we move it on and ask the Scottish Government, the Law Commission, the Law Society of Scotland for their views and move it on from there. I agree to write to the Scottish Government, the Law Commission and the Law Society of Scotland seeking the respective views and action called for the petition. Of course, people are able to then respond to the submissions from them. I thank you for that. If we can then move on to the last new petition for consideration today, which is petition 1697 on the Child Funeral Fund by Michael Maguire. The petition calls for the Scottish Government to establish a child funeral fund similar to the fund that the UK Government has established in England and Wales. As members will be aware from the clerk's note, the Scottish Government has recently announced funding that will remove all local authority charges for burials and cremations for people under the age of 18. The petitioner has indicated that the Government's announcement addresses the action that he is calling for in his petition and is therefore content with the petition to be closed. In correspondence received by the clerk's, the petitioner expresses gratitude to the Scottish Parliament for the consideration that he has given to his petition. He also highlights the impact that the Government's decision will have for many people, which he states is reflected in the comments section of the petition. The petitioner also wishes to highlight his own personal experience as a bereaved parent. He explains that when he lost his son, Kyle, he had to go back to work three days after the funeral for financial reasons. Because of that, the petitioner states that he missed out on vital time to grieve over the death of his son and to be there for his wife, which is an impact that still feels nine years on. The petitioner is of the view that the Government's announcement will be, quote, far reaching and help so many families at a time when the lights have simply gone out in their lives. I wonder if people have any comments ahead of us reflecting on the side of the petitioner to close the petition. There is sympathy for the petition. We can tell by some of the comments from the petitioner how strongly he felt and how he was speaking on behalf of many other people in the same situation. I am pleased that the Scottish Government has announced that it will remove all local authority charges for burials and cremations for those under age 18. On the basis that he has indicated that he is content to close the petition, we should go along with those lines. We agree that we close the petition understanding order rule 15.7. On the basis that the petitioner has indicated that he wishes to withdraw the petition, it is good to note that he is withdrawing it not out of frustration but a recognition that he has secured progress. I think that we would want to thank the petitioner. It is not always easy. I am sure that it is never easy to be able to take your individual experience and try to make a difference for other people, but he has done that out of his dreadful circumstances. I think that we are grateful to the Scottish Government for responding to that. As he says, it will make a difference to the lives of people who are grieving. On that basis, we are agreeing that the petition be closed. In that case, I will suspend briefly until we get Government officials to join the table. If I can call a meeting back to order, I will move to the next item on our agenda, which is the consideration of continued petitions. We will last consider petition 1619 on access to continuous locals monitoring by Stuart Knox at our meeting in March when we agreed to write to the Scottish Government NHS boards and the Scottish Intercollegiate Guidelines Network and the petitioner. Responses have now been received and are included in our meeting papers. Members will also recall that we previously agreed to invite the Scottish Government to provide evidence on this petition. It was anticipated that the Cabinet Secretary for Health and Sport, Shona Robison, would be in attendance for today's evidence session. However, as the committee will be aware, the Cabinet Secretary resigned from her position on Tuesday this week and therefore will not be present at our meeting today. However, I think that we would want to record our thanks to Shona Robison, who has been someone who has been willing to engage with the petitions committee over time of her responsibilities. As Cabinet Secretary, we want to wish her well in her new role. I am, however, pleased to welcome Professor Jason Leitch, National Clinical Director of Healthcare Quality and Strategy, Gillian Gunn, team leader and Richard Shearer, senior policy officer from the Scottish Government strategy planning and clinical priorities team. I thank you for attending the meeting today. As you will be aware, you have up to five minutes to make an opening statement if you wish to do so, after which we will move to questions from the committee. Morning, convener. Thank you very much for having us. Forgive the short notice change of personnel. Let me outline the present position for you and then I will be very happy to take questions as best I can. I know how difficult it can be to manage diabetes. I am a dentist and oral surgeon. I am a clinician. I have been for 26 years. With this in mind, we must ensure that health technologies used have clear evidence of their safety and clinical and cost effectiveness with appropriate evidence-based guidelines on their use. Before we go further, maybe I should clarify the difference between two technologies. I am sure that the committee has grasped that over the months of looking at the subject. Between continuous glucose monitors, CGMs and flash glucose monitoring, which is freestyle libra as the example that you have been looking at, there are two different types of devices. Without technical details, continuous glucose monitoring has a strong evidence base. It provides alarms and warnings of impending hypoglycemic attacks and can be used in conjunction with insulin pumps. Freestyle libra, a flash glucose monitor, cannot be used like this. It does not provide real-time continuous glucose monitoring or alarming. We took the step of referring this topic to the Scottish Health Technologies Group, which is our organisation that independently looks at the evidence available both clinically and cost-effectively. The current position is that seven NHS boards have included freestyle libra in their local formulary. I look forward to the advice statement from the health technology group, which I expect in July, to assist the remaining NHS boards in identifying how they may best consider adoption of this technology in an open, equitable and manageable process. We have encouraged those boards who have introduced it to share their experience with other boards. We have asked those boards to ensure that they accurately record the introduction of all diabetes devices into our Sky Diabetes System, which is one of our best e-health and technology systems that we have to help to inform that developing evidence base. I am happy to take any questions. Thank you very much. I welcome Emma Harper, MSP, for this item on the agenda. One of the issues that the committee heard during its fat finding visit on the petition last year was that there had been delays in relation to NHS boards receiving the initial £2 million funding during 2017-18. I wonder if you can respond to that issue. Gillian Rennart deal with the delay in inverted commas. The funding was for continuous glucose monitoring and pumps, not for flash glucose monitoring—two different things. The funding that went to the boards was for continuous glucose monitoring and insulin pumps. You said that there was a delay in inverted commas. Are you arguing that there was not a delay? I simply do not know that. That is why I was going to ask Gillian Rennart. There has been no delay in issuing the funds that were announced and committed to by the ministers. The funds went out on time for the beginning of the financial year in 2017. Again, in this financial year. Somebody has got it wrong then. There has not been a delay. There has been no delay from Scottish Government issuing the funds to all health boards, as described in the director's letters of last year and this year. We also received evidence from the NHS 4th valley, stating that it had to revise how it planned to spend allocated funding due to VAT not being included. I wonder if you can clarify that position and whether the guidance is sufficiently clear to health boards in relation to actual funding available to them. The funding that was allocated to the boards for insulin pumps and continuous glucose monitors did not include VAT. The boards have funded the VAT from within their own resources. The funding for insulin pumps and continuous glucose monitors is to buy the technologies and to increase the amount of people receiving CGMS and insulin pumps for adults. We were going to quantify what the £2 million meant. We had to then calculate in what the boards would have to find in relation to VAT. There are differences for each boards in how they fund the technologies. The amounts that have been given will depend on which technologies they buy for the individual people. There are a range of continuous glucose monitors that are available and there are a range of insulin pumps that are available. Boards will purchase the most appropriate to the person or individual that they are seeing. Isn't it possible that if the Scottish Government is providing funding that they would factor in how much that extra would cost to deliver it? It does not seem to me to be reasonable to say that we are giving you this amount of money to address a problem, but as a consequence of us giving you this money you are then going to have to find more money. Presumably what most health boards have to do when there is not much money is to incorporate the cost of VAT into the amount that they have been given and there will be reduction perhaps in the expectation of those who will be able to be helped. So they have the money to spend as they want on this subject. Let's be careful not to confuse that with this petition. This petition is about flash glucose monitoring. I am not confusing the issue. I understand because we have been given the evidence of what the difference is. I am asking you that when the Scottish Government provides funding do they calculate at that point what the implications are going to be in terms of VAT and therefore provide a transparent report on how many people are going to be able to be helped by the monies that are being provided? Along with a commitment and a target for the number of people who would then get insulin pumps and continuous glucose monitoring, that number is public and published and we are on target to meet those numbers. That includes the cost of VAT then? Correct. So to suggest that NHS 4th valley state, they are mistaken in thinking that they were getting X amount of money to provide X amount of support but then discovered they had to pay VAT as well. They are mistaken in that regard. Your calculation is... I am not suggesting that they are mistaken. I am suggesting that the money that they got to meet their target for lack of a better expression for continuous glucose monitoring and insulin pumps has enabled them to reach their target. That will have to include VAT. When they say that they did not realise that, they are wrong. No, I am sure that they are telling the truth that they did not realise that. I am not suggesting that they are lying. They are just ill informed. Perhaps there is a misunderstanding between the two organisations, us and them. Is this an unusual situation where VAT is factored in or not factored in? The technologies that are purchased by the national health service, some of them, many of them, include VAT. When we give money for a specific purpose, such as this, which we do not do very often, we give boards a block grant in order for them to spend for the health of their population, this money for a specific technology came with aims and targets for each board to meet, that has to include the cost of the whole technology. So your targets were informed by the costs in terms of VAT? Correct. It is not the case that health boards will have to find the money separately for VAT, but that is what we heard earlier. That would be my understanding. I am very happy to talk to 4th valley and correct any confusion. It does seem to me to be quite a significant issue, and I do not know if we seem to have got two separate messages from the evidence that we have already, but I will move on to Angus Macdonald and maybe we will come back to that point. Okay, thanks, convener. Good morning to the panel. Taking on board your clarification regarding funding for continuous glucose monitoring, when the committee was, when we were on our fact finding visit to Dumfries and Galloway a few months ago, we discussed the cost of using glucose monitoring technology compared to traditional pinprick blood tests. We heard from diabetes sufferers and pharmacists that there was not much of a cost difference, but a consultant that we met suggested that there was. The suggestion took account of access to peripherals such as testing strips. Can you clarify for us what cost analysis you have undertaken in relation to the costs of pinpricking compared to continuous glucose monitoring and flash glucose monitoring? In terms of continuous glucose monitoring, because of the population that is targeted at, it is matching the technology to the individual that is most important. We know that it costs more, but it is because of the additional features that it has such as the alarms and the ability to be linked to a pump. The cost analysis on that basis is more around what it costs to deliver. We know that there is an offset against it. In terms of flash glucose monitoring, there is a point at which it becomes the same or lower cost than finger pricking, and that is between eight and ten finger pricks a day. Someone who is doing less than eight finger pricks costs marginally more for flash and beyond that costs marginally less, because there is a fixed cost around flash because it does not matter how often you scan, the cost of scanning does not increase, but if you finger prick, then each test strip there is a cost attached to it. Good morning, panel. The committee notes that we noted that the guidance provided to NHS boards for the 2017-18 on future funding states that there will be an increased emphasis on continuous glucose monitor devices. However, the more recent 2018-19 guidance does not contain a similar statement. Do you explain, as a panel and individually, why this is the case and what other guidance NHS boards may be provided with regarding the future funding of these devices? The initial letter went out at a time that we had planned to initiate fewer CGMs in the first year than we ended up doing. After that letter, there was some discussion with boards who had identified less, marginally less people for insulin pumps than they were able to identify for CGMs who ended up funding 50 per cent more roughly CGM in the first year than we had planned. We are now on a trajectory of initiating around about the same or slightly more each year rather than the increase in trajectory that we had originally planned on. I have nothing else other than to say that it is important, as with all new technologies such as CGM, to use it in the appropriate people. It is quite a small number of people who benefit from that much more expensive technology. It is people who would have regular hypoglycemic attacks who cannot notice when their blood sugars are going off, for lack of a better word. The alarming, the slightly more invasive nature of the continuous glucose monitoring to start it off is very useful in that small group of people, because we can then link it technologically to the insulin pump to control their insulin. The phased approach for continuous glucose monitors is enabling us to ensure that we have a workforce that is skilled appropriately. That is an important part of introducing new technologies. Just to clarify, then, is the ambition to end eventually pinprick testing? Globally, you mean? Or for us? No, not globally. So it would appear with the present technologies available that pinprick monitoring will continue for the foreseeable future until cheaper technology and easier technology becomes available. But it would be recognised as less than optimal for people to be getting pinprick testing. I mean, if we discount the issue, of course. Indeed. If we can find a technology, if the diabetes community, patients, families and medical staff, can find a technology that fulfills that purpose that is non-invasive, that will be a big change. We appear to be in a period of technological advancement that is moving us towards that. Okay, so, CGM, for example, requires calibration through finger pricking on a daily basis, and there are rules with the DVLA around finger pricking and driving. So the future, we would hope, as Jason says, to have a non-invasive approach, but currently the technology that we have all requires finger pricking still. Okay, thank you. I understand from reports that I have read that we are not all that far from that technology being available. Is that correct? I am talking about the matter of maybe a couple of years. In terms of the artificial pancreas, do you mean? Yes. Well, not having to pinprick, basically, in layman's terms. Potentially, but the artificial pancreas is still on an early testing stage, and so, as with all technology, you would expect it to go through comprehensive clinical trialling, and then there is the roll-out, there is the ability for manufacturers to achieve the scale of numbers that we would require, and then there is the clinical appropriateness of any technology for the particular subgroup of the conditioner. Okay, thank you. Okay, thank you, convener. Good morning. Professor Leitch, you mentioned in your opening statement that the Scottish Health Technologies Group are undertaking a national appraisal of freestyle libra as a lack of published data about the clinical and cost effectiveness of flash glucose monitoring. Can you explain why freestyle libra was added to the Scottish drug tariff if there was insufficient information of its clinical or cost effectiveness? Scottish drug tariff is a different bar from then getting to formulas. The Scottish drug tariff requires safety and no detriment, but it does not take account of clinical effectiveness and cost effectiveness, so it is the first step towards delivery as a prescribed medicine or device. The next step is local formalities in the boards, the local formalities committees in the board decide yes or no for their local formalities. That is informed by local evidence from investigators, by pharmacists, by clinicians in that room, but then we try and help that nationally, by doing national investigations using the sign guidelines, using the SMC for drugs and for devices such as this, we use the Scottish Health Technology Group. That has happened pretty quickly from when it joined the tariff in November. We are now in July going to get a report from the health technologies group, which will give us more evidence or a combined evidence that will allow us then to go back to boards and continue the journey. Clarification. It is added to the drug tariff before those that have been scoped out. Correct. The same as in the other four UK, each country has its own drugs tariff. For medicines, you get European approval, then you get individual country approval in the drugs tariff, and then it is added to formulas. In England, the CCGs decide what is in the formulas regionally, and in Scotland, the health boards decide what is in the formulas. You say that the appraisal is due to be published in July. Have you had any engagement with the group on the findings so far, and have you any indication of what the findings might be? They act independently quite deliberately. They are a part of healthcare improvement Scotland, but they take independent evidence and independent witnesses. I am expecting it. I am led to believe that I will get it in the next few weeks. I have actually had letters written to me from constituents about freestyle Libra, and I received a letter from Shona Robison in April. It says that the Scottish Government is increasing the access to continuous glucose monitors, which, when used in combination with insulin pump therapy, have been clinically proven to significantly reduce A, B, A1, C levels and hyperglycemic episodes. In the 17 and 18 guidance that was provided to NHS boards, it stated that there was increased emphasis on continuous glucose monitoring devices, but in the recent 18 and 19 guidance, that does not contain a similar statement. I just wondered why that was the case, and what other guidance the NHS boards would be given on funding if both years were differing? What we sought to do with the second letter, the 18 and 19 letter, was not to just repeat the 17 and 18 letter. To make it simpler for boards, the principles have been established with the first letter and the first round of funding. What we sought to do was to just to clarify where there are similarities with the first year, so that it is the same target group and to set out what the funding was, just to reduce the scale of the correspondence that we had. To be clear, we still believe what was in the first letter. We believe that continuous glucose monitoring connected to insulin pumps is appropriate for a small number of—it is not a useful—it is not a particularly pleasant phrase—the difficult control group of diabetics, and it provides a real step change in their lifestyles. They can live normal lives where previously they could not. We still believe that technology to be clinically effective and cost effective in that group. Can you clarify where the future is, even though you have a difficult group to control there and that treatment is appropriate for them? What is the future and what is the future direction that you are taking NHS boards? What we are doing is, on an annual basis, we review the guidance that we have issued in terms of the group that we are targeting our funding at with our national diabetes specialist nurse who is focused on technology and who is assisting boards in the role and implementation of CGM and insulin pumps to make sure that we are still focused on the correct group. It may be that, as we move on, we move to the next priority group, if we have managed to issue and initiate CGM for as many of the hypocyclicemic unawareness group, for example, as we are willing to take the technology on, then we will look at the next clinically indicated group beyond that in terms of risk. To clarify, what is the guidance on the funding part of that to the boards? The guidance on the funding will come in the annual director's letter. If we get to the point at which we move to the next indicated risk group, that will be contained in that director's letter in terms of the annual funding. I am co-convener of the cross-party diabetes group, I also have type 1 myself, I am a pump user and I am an intermittent flash monitor user as well, so I understand the technology and how it works and everything. I also have a constituent who has a seven-year-old who is not having seizures at night anymore when flash monitoring was introduced and that is fantastic. I am curious about how we support the patients and the nurses, the staff to educate them. NHS Dumfries-Galloway has set criteria in order to qualify people to obtain a flash monitor. They have to do six times tests a day, they have to agree to participate in uploading their results, they have to have attended the Daphne course, which is those adjustments for normal eating. It is very complicated and I understand that the staff will have to be trained if they are going to help to support people with type 1, and I am just interested in what your thoughts would be about that. You raised an important point on both sides of the new technology. Both the patients and the families have to be trained. That has implications for both them and for the diabetic nurses, the general practitioners. Presently, it is a secondary care-provided technology, so that has implications for who is going to train them. We have to ensure that our staff stay up with those technologies. The Scottish Diabetes Group, the third sector organisations, help us with all that. It is absolutely correct that boards will set criteria for inclusion of whatever that new technology is, just like they would for insulin pumps, just like they would for any other home device for some other technology, dialysis or whatever else we were doing. We will provide guidance like we often do, either through Healthcare Improvement Scotland's work or the Scottish Government's work, to try and equalise that guidance as best we can across those territorial boards. Obviously, it is very complicated. I love the idea that technologies help to reduce finger sticks, because so many people have pain. I agree that we still have to continue to do finger stick as a way to calibrate flash, so that it will not completely eliminate finger sticking. That is correct. That is correct. I imagine that the companies are working tirelessly behind the scenes on technologies that will eventually replace the more invasive elements of diabetes care. Just now, the machines require a test in order to calibrate against themselves. When people go for secondary care diabetes care, they have actual blood tests, not pinpricks tests. In order to monitor their continuous care, they require blood testing. I cannot see a world quickly where that is going to disappear. I am assuming that, as more and more people are introduced to CGM and flash, that then boards will be monitoring the hemoglobin E1C levels to show that there is an improvement, because long-term blood glucose control will reduce issues of all the complications associated with diabetes. In the long term, it would be a cost savings. If what you say becomes true, that is correct. That is why the Sky Diabetes thing is very important. I am relieved that the Freezing Alley wants to know the data, because that allows Sky Diabetes, which monitors, as you know, your probably on Sky Diabetes. Sky Diabetes monitors eye problems, foot problems, hypoglycemic admissions, and we will be able to relate that to the technology that the individual is using, and that will give us more. The Scottish Health Technology Group presently can really only look at published evidence. It does not have Scotland-wide thousands of patients evidence. It would eventually have that. I may be just in conclusion ask a couple of questions. The committee has previously heard that the sign guidelines for diabetes type 1 management are out of date, and have not kept up to date with technology. I wonder how you would respond to that. We are engaging with Healthcare Improvement Scotland to look at the sign guidelines. We have sought advice from them on updating those and are progressing that work with Healthcare Improvement Scotland and Sign. What is the time scale for that? There is not a time scale at the moment. We are looking to see how sign guidelines may be updated. We are aware that nice guidance has recently been updated, and it is looking across all of the national guidance that is currently available. I will take to answer that question more fully, convener. I will ask them. Sorry? I will ask them for a time. It would be very useful to know. I accept that some of this may be a moving target, but it is easy to do something that is always helpful to have a time scale. Sign has a waiting list and a process for a pipeline for both new guidelines and updating its guidelines. It will be in that pipeline somewhere. They are also reviewing the nature of how they do guidelines, exactly because of the pace of change within healthcare. The traditional method of quite a long period of evidence gathering of sometimes two or three years moves, as you say, during that two or three years, so that they need a slightly more agile version of it. It may be that they change their processes and that would help for diabetes care, but it would help for asthma care for others. I think that it would be useful to get more information. I understand absolutely the point that technology itself is a moving feast and that there can be a problem when there is something already developed that changes the landscape completely. Finally, can I ask about understanding that ministers have asked NHS boards to provide quarterly updates on the progress that is made in relation to the additional funding that we spoke about earlier? What does this information tell you, and what do you understand the continuing challenges with health boards to be in relation to how they use the funding? The information from boards tells us that they are on track to meet the targets that we have been setting. In terms of future, we know that the cost of these technologies has an impact on boards. That is why we have been supporting it nationally, and we need to work with the boards as we progress through this period of funding so that they can embed it into their resources in the future. We will be mainstreamed at a later stage. Inchland pumps for our children are already mainstreamed. The additional funding for adult pumps is to help them to further progress what is already mainstreamed within their budgets. You would be continuing to keep an eye on the targets, whether they have been met. In that case, I thank you very much for that. I appreciate that you have had to come along at short notice. I appreciate your response to the questions. I wonder whether we have comments or suggestions for action, given what we have heard. Rona Fawr, you have obviously reflected the evidence that we have heard, which was very useful. We continue the petition until the national appraisal has been published shortly, and then we take stock of where we are at that point. I wonder whether it will be worthwhile at some point to invite the cabinet secretary, the new cabinet secretary, to come in to see if they are just to get an update from her perspective of where we might be with this. Some of this feels like it is testing whether the funding has been adequate in terms of meeting the targets and whether there continue to be issues around that, but also in terms of the idea that guidance is behind the technology, what kind of progress there is, and that would be useful to hear as well. We are going to continue the petition and we will reflect the evidence that we have heard today, and it may be that we have factored in another session with the new cabinet secretary to respond to some of the no doubt submissions that will follow this. Of course, as I said before, the petitioner will have a further opportunity to submit their comments on what we have heard today. With that, I thank again our witnesses today, and I will suspend them briefly to allow the official to leave the table. We are now moving on to the next two positions for consideration, which are petition 1480 on Alzheimer's and dementia awareness by Amanda Coppell on behalf of the Frank Coppell Alzheimer's awareness campaign, and petition 1533 by Geoff Adamson on behalf of Scotland Against the Care tax on abolition of non-residential social care charges for older and disabled people. As members will note from our papers, the petitioner for petition 1533 continues to express concerns about how money for free personal care will be distributed to people who need it, despite having met with the Scottish Government which agrees to assess his proposals. The committee may also wish to note that regulations were recently approved by the Scottish Parliament with regard to the action called for in petition 1480 to extend free personal care to under 65s who require it, regardless of that person's condition, and I wonder if members have any comments or suggestions for action. Angus? Yes, thanks, convener. Given the positive progress with regard to petition 1480, we could close the petition understanding orders rule 15.7, given that the Health and Sport Committee has recently approved regulations that address the action that was called for, which is extremely good news. I certainly thought that it would be reasonable to recognise the progress that has been made in that and close that petition. A person, I think, has a lot left to explore around Scotland against the care tax issues in the evidence. The whole question of the definition of care, but the importance of care, from a human rights perspective, of someone being able to go and work and achieve their potential if they are being taxed and the care tax is preventing them from doing that, or if they are denying themselves the support that they might need because they cannot afford it. I think that it feels to me that we need more explanation of those issues. I found the evidence on that one pretty compelling. I know that we might perhaps relate to the Scottish Government because there are still some points that have perhaps been addressed that were recommended and that is how it is unclear how the money will be distributed and whether it goes directly to the person or to local authorities. I think that there are some unanswered questions still remaining. Yes. Clearly, the petitioner feels quite strongly about that. Whether the proposals that they have identified, if the conclusion is that the money goes to local authorities and not directly to those who need the support, then there would be a question there. Anyone else? We could do with some more clarification on that side of it. Although it is great news that the actions have been approved initially by the Health and Sport Committee, I think that there are still some questions that we could put around the other issue that you mentioned. I agree with that. I think that it is a matter of getting us to get all the information on the table. I am quite struck by the range of individuals and organisations that are supporting the second petition. I know myself that there was a presentation where a disabled young woman was saying that her student loan was factored in terms of income against what she might have to pay in terms of her own support. It might be something that we want to explore further about whether we can afford a circumstance where people could be brought together to look at those issues in the first stage. It might suggest that we write to the Scottish Government to seek an update on its assessment of the proposals that were put forward by Scotland against the Care Tax. In previous considerations, there had been an issue about cost, but I do not know how confident we felt about how rigorous the assessment of cost would be. I know that, if I remember correctly, COSLA local authorities had highlighted that. It would be useful for the Scottish Government to reflect on that as well. To address the question, there is a broader question about the definition of care when people might need care that is not simply about their personal care, but it is about things that they need support with in order for them to be able to work or whatever. Are we agreed that we are going to close petition 1480, recognising the progress that has been made in that regard? We will also write to the Scottish Government to seek an update on the assessment of the proposals that were put forward by Scotland against the Care Tax. I think that everyone was aware of that campaign and how powerful it was under the impact of the petition that she took forward and the compelling way in which the case was argued by the campaign that there has been progress. We would thank her very much for that, but we would want to continue petition 1533 in order to be fully satisfied with the concerns that have been addressed. The next two petitions for consideration are petition 1610 by Matt Halliday on upgrade of the A75 and petition 1657 by Donald MacCary on behalf of the action group on the A77 upgrade. Can I welcome Finlay Carson to the table for consideration of the petition and recognise that I'm a Harper's as an amendment position in order to participate in our consideration of these two petitions? Members will recall our last consideration of these two petitions in March, reflecting the evidence heard from the Minister for Transport and Islands and agreed to write to the Scottish Government holliers and ferry operators responses have now been received and included in our meeting papers. Members will note from this information that the petitioner raises concerns that the information used to decide the standard of road for the Mable bypass was out of date and inaccurate. Written responses received also highlight a number of issues that we have repeatedly heard from different stakeholders, including the HDV speed limit not being appropriate, particularly in relation to the A77, the quality of the road being poor and competition from ports elsewhere in the UK threatening the long-term economic future of the ferry ports in the area. I was quite struck by the number of submissions that there were in the very substantial points that they were making. I wonder if members have any comments or suggestions for action. I wonder if it was quite all maybe hearing from Finlay and Emma, and then we can grind the table. Thanks, convener. I think we just highlight the real dire situation. We'll be down in the south-west with both the A75 and A77. I think at this time of year it certainly highlights the issues, because we have some parts of the A75, as we mentioned in one of the submissions from one of the ferry operators, about the condition of maintenance on the road, where we have trees and vegetation right over the white line. Instead of the A75 getting wider, which we would all like to see, it is growing narrower by feet every time you have new leaves in the trees. I took the opportunity to drive the route with Dave Allen, the route manager in the autumn of last year, and highlighted some of the areas where immediate maintenance was required. Unfortunately, that has not been carried out, and we have stretches of the road that cannot possibly come up to the standards that should be required of a trunk rate of its status with regards to line of sight and visual stopping distances in corners. If nothing else, that needs to be addressed seriously. We have now got lorries that are cutting the hedges and the verges, rather than them being cut back by contractors. That is just unacceptable. Thank you, convener. I am interested to hear today about actions moving forward, because both routes, the A75 and the A77, are really important for the economy of the ferry ports and Cairnryan and Strunrar. Finlay Carson has highlighted the issues in certain parts of the roads that are really troublesome, because lorries have a hard time passing each other. I recently asked Minister Humza Yousaf about reviewing the speed limit from 40mph to 50mph at the request of a lorry driving constituent at Strunrar. I guess that review will be welcome related to the A9 and the speed cameras and the speed limits increase there. For me, I am just interested in keeping the petition open so that we can continue to look at improvements for the infrastructure in the south-west of Scotland. Finlay Carson, we were led to believe that there was an additional piece of work coming forward in the form of a review, and that was commissioned in March. However, it would appear that the review is only going to feed into the national strategic transport review, so we are probably looking at three years before there are any conclusions to that. Realistically, we are probably looking at six years before any action could be taken in the A75 and A77, and I think that that needs to be looked at seriously. It really needs to be accelerated, and the process of doing the review has potentially just slowed the whole thing down. However, I spoke to someone and then said in Transport Scotland that they suggest that it could be six years by the time the review was done. If there was any work identified by the time it went through consultation and so on, it could be six years before any plans came on at the table, and that is totally unacceptable. I noted that on 29 March this year that the then transport minister had committed to increasing the speed limit, but subsequently the Scottish Government had said that there was no plan to increase the speed limit. We now have a new transport minister in Michael Matheson. I mean obviously you will guide the committee as to what we should do following comments from the committee, but perhaps it is in our best interest to get clarification on that, considering the two members here have concerns regarding that. Angus? Yes, thanks, convener. It is certainly disappointing to note the comments from PNO, which Finlay has alluded to, who have highlighted that the condition of both the A75 and A77 has significantly worsened over recent months and surface repairs have not kept up with the rate of deterioration. We heard on our fact-finding visit when we were down in Dumfries and Galloway of the potential loss of the ferry ports. That is clearly a concern and it is extremely disappointing to hear that the condition of the roads has worsened, particularly given the coverage that the petitioners have secured during the length of the petition and the fact that it has been on the Government's radar. I am disappointed to hear those reports and to share concerns that have been expressed already. Moris? I think that the two recommendations are very appropriate, but I think that you should need to bear in mind the economic angle with which the poor road conditions that have just been highlighted are endangering the future viability of the economic corridor. It could be a decision that has been taken out of the Government's hands by the commercial sector. We do not want to see that happen and I think that that was reflected by Emma and Finlay. Comments on how we take it forward. I certainly would think that it would be worthwhile asking the Scottish Government—it means very specifically the petitioners' concerns in 1657—that the information used to select the standard of road for the meable bypass was outdated and inaccurate. That is something that we just want a response to. What plans A com limited has to engage with both petitioners and the South West Scotland transport study, because it feels like something that would be quite important to inform their thinking. I think that we could agree to do that. Is there something more that we could perhaps be looking at in terms of really bringing it? I think that the economic thing has been something that has been a thread. It is not just about the roads, it is not just about the frustration of individual drivers and the risk to people going up and down that road, but the economic impact of not moving more quickly on it is quite significant. How can we be guaranteed that Transport Scotland with the recent appointment of the A com limited, when they undertake the study and go out to stakeholders to get evidence regarding those roads, how can we be confident that there will be an economic impact as part of that? Other than us taking our own evidence, but having just joined the committee, Angus MacDonald said that you had been down to Dumfries and Galloway. I do not know whether that was specifically to speak to anybody who was involved in the study. Was the economic impact discussed? I agree. It seems to be slow or no progress on that every time we discuss it. Transport Scotland is saying that the study is at an early inception stage, which raises alarm bells. That is just going to drag on and on. We need to write to Transport Scotland and point out the worsening state of the roads and, quite frankly, the urgency of that, because I do not think that the ports are going to wait forever. Transport Minister de Taeli, that this has been an on-going issue, we think that it is something that, particularly this issue, we are developing a project that is already not fit for purpose, I think that that would be a concern. I wondered whether it would be worthwhile to have a round-table discussion in Parliament with the interested groups, because I think that frustration about the issues that people have identified. What is the action that Transport Scotland and Government officials, along with stakeholders in it, might be a useful way forward? One of the frustrating things is that we know that there are plans being drawn up. We have had engineers look at some road improvements in the A75 and it was shelved for various reasons. There are plans for some road improvements in the A75 already. We have heard over and over that economic argument. I just do not see that waiting six years is acceptable when we know what the answers are to all those questions. I think that a round-table would be a great opportunity to try and get some answers. I might be asking the questions about what sections of the roads have had improvements designed and engineered. They are sitting on a shelf waiting for someone to give them anodd. I have tried three times to get a freedom of information with regards to how much land the Scottish ministers own along the A75. I have just been not back every time suggesting that it was not in the public interest, which is utterly nonsense, given the number of respondents that we have had for even this petition. A round-table would certainly give us an opportunity to get those questions on record and hopefully get some answers. It would be worthwhile to find out where the information is coming from that suggests that the ferry operators are considering alternative routes. Are they? I do not know. The haulage companies seem to put that rumour out and that would be pretty devastating if the ferries moved. I have been trying to find information regarding that myself. I think that it would be great if the new transport minister would go and meet people at Cairn Rhyon at the ferry terminal and get the views of the stakeholders from taking the road to get there as well. What pressure has the Freedom and Galloway Council put on Transport Scotland and, indeed, the Council of Scotland? I think that we really need to involve them. Once again, I have been quite disappointed that I asked some questions to the council about what lobbying they have done of the Scottish Government, and there is very little. I know that they have stepped up somewhat in the past few years, but the council did put together a strategic plan for improvements to the A75 and the cost. I think that that was produced maybe 15-20 years ago. Again, it is set on the shelf. However, some of the economic arguments have already been had, and there are documents laying out what improvements and when they should be scheduled. That was in the back of the ferry terminals and the reduction in traffic, potentially, with the dual carriages opening up at Holyhead and Hayesham. Sorry for the experience, but I have the problem with the A83 going to Camelton, and the rest will be thankful. Unless the councils push hard, the individual councillors even, they will get nowhere with Scotland. I would say that that is an important thing that has maybe been caused in my mind. I think that your suggestion of a round table would help to keep the Government's mind concentrated on the issue, or if it hasn't, it will make sure that it is. However, given the evidence that we took on the fact-finding mission, I would be keen to make sure that P&O and Stenoline are included in the round table, because I think that it is significant that they are in their position at the moment. That has been a useful consideration. We have highlighted the concerns of the petitioner on 1657, and we would want that information and how they will be engaged with by e-colon limited. We would also look at a round table discussion with relevant stakeholders, and we will take into account everything that people have said about the definitions of relevant stakeholders. I think that we would want to write to the Scottish Government particularly to highlight that this is a big issue in the new minister's entry, and we would welcome any response from them as well. In that case, I thank Finlay Carson and Emma Harper for their attendance. If we can then move on to the next petition, which is petition 1629 by Jennifer Lewis on MRI scans for ocular melanoma sufferers in Scotland, we will consider this petition in December 2017, when we agreed to write to the Scottish Government and the chief medical officer on three issues, as identified by the petitioner. The note by the clerk provides a summary of the Scottish Government's response on the issues of the establishment and work of a group to develop guidance and recommendations on surveillance, peer reviewed evidence and national services division policy. The petitioner and Ian Galloway have responded to the Scottish Government's submission and appear to feel that no significant progress has been made on this issue. Ian Galloway raises a number of questions that he feels remain unanswered by the Scottish Government. The petitioner has made a number of comments on the detect cancer early programme in the context of the petition. I certainly thought that both the petitioner and Ian Galloway really made very compelling arguments about more need and done to address the concerns that they were identifying. One of the things it felt to me that is an on-going frustration because the incidence of this cancer is very low as if it is not getting the attention and understanding that perhaps it merits and you can understand the frustrations of the petitioner and Ian Galloway. They see something very straightforward that would support sufferers of this cancer and early identification of problems in the liver. I did not personally think that the Scottish Government's response was defensive, I think, I felt it was. I would welcome comments of other members about how they think they might take this forward. Maurice Corry is an interesting one. I would like to see the Scottish Government look at what happens in Liverpool, Sheffield and Southampton, who are all top dogs in this, because they have certainly got the formula right. I know this from an experienced friend of mine, who has gone through the process, and it is clear that Liverpool has the right pathway, shall we say, for this, and so does Sheffield and Southampton. I would ask the Scottish Government to look at what they are doing and can we pick up all the plus points on that, because it is clear that they are delivering it. It did strike me that the Scottish Government argument was that this has not been proved, that there are issues that have not been peer reviewed and so on, but we know that practice in other parts of the United Kingdom are different. I would have seen the point if they had said that our priorities are different. I thought that they were questioning the evidence base for it, which would then be questioning the evidence base using the other parts of the United Kingdom, which I was quite taken aback by. I agree with Maurice Corry, and I think that Ian Galloway's quote, absence of evidence is not evidence of absence, is quite apt. It does not prove that it does not lead us anywhere. More questions have to be asked about whether there is a way forward so that the petitioner's concerns are responded to. It is a very strong petition, and we need to keep it open and take it forward. There is a more issue that I flagged up already. If something is rare, you can understand why people, and I am sure that nobody is doing this intentionally, but if a cancer is rare, does it mean that the process is not the same as for the more common cancers? You can understand why people would be gravely concerned about that. I certainly would not think that it was intentional, but it is simply a lack of understanding and awareness of it in the same way. How does the health service address that problem? I think that that is quite an interesting one. I think that it must be quite frustrating to know that you can receive that MRI style treatment south of the border and not in Scotland. For me, that is a very strong petition because of that aspect of having choice and having to be forced down the route of travelling, and that is an anxious process for people who are already unwell. Actually, part of the petition was that people would rather travel if they were going to get the most appropriate and effective treatment, and I think that the concern is certainly in the papers that if you go to a local hospital, they may not catch it, they may not spot it because of the lack of expertise. At some point, whether along the line things have progressed in a way that might not—that is a horrible position to be in when you start thinking there might have been in these circumstances. I just feel that we are not gripping the fact that what is available is elsewhere. That is really my concern, and that is because I have had from this experience—if you probably remember when we had that gentleman who came and had actually been through it. I remember talking to him afterwards and he is absolutely reflecting what I have just said. We are agreeing certainly that we would write in the first instance to the Scottish Government asking him to respond to questions posed by Ian Galloway and to respond to petitioners' comments in relation to the death cancer early programme and his whole question about how we deal with rare cancers and to what extent they appreciate that sufferers are in the same condition in other parts of the United Kingdom would have an expectation of a different treatment. I think that again we may want to flag up this something that in a later stage we want to hear directly from the Cabinet Secretary about. If that is the case, we can then move on to and again to thank the petitioner, Andy Galloway, for very substantial submissions that he provided, which were very helpful. If we can then move on to our next petition, which is the petition 1664 on the greater protection for mountain hares, I welcome Mark Ruskell MSP for this session. Our last consideration of this petition may be noted that the Scottish Government intended to explore the prevention of mass culls of mountain hares, including the legislation and a licensing scheme. That intention was set out by the First Minister in response to a question from Alison Johnson MSP. As members will recall, that is in addition to the independent Grouse Moor review group set up by the Scottish Government to look at the environmental impact of Grouse Moor management practices and will include mountain hares culls, which is expected to report in spring 2019. The petitioner states that he is encouraged by the action taken by the Scottish Government to explore options to prevent the mass culls of mountain hares, but highlights the urgent action that is required to protect the mountain hares population in Scotland. I wonder if members have any comments or suggestions for action. Do you know whether it would be useful, perhaps? Mark Ruskell, if you want to say a few words. Yes, thanks, convener. I just had a couple of comments on this one. There have been other petitions that are related to concerns around the management measures employed by Driven Grouse Moors, and one was the petition by Logan Steele around concerns around raptor persecution and need for a licensing regime. The Environment, Climate Change and Land Reform Committee on receipt of that petition has been doing, I think, some really good scrutiny on that. There is one aspect of the concerns that petitioners have about Driven Grouse Moors shooting and the wearer's seat review that is now looking at licensing has come out of some of the committee's scrutiny work on that and discussions with the Cabinet Secretary. It would seem to be, in my mind, logical for this petition to be forwarded on to Environment, Climate Change and Land Reform on the same basis and that it looks at a particular management measure that is being used by Driven Grouse Moors shooting, which is Driven Grouse Moors States, which is controversial and which there is a lot of debate around. It would seem sensible within the context of that wider discussion for that committee to be feeding that in. The petition also talks about the open season in 1 August and the more immediate issues about what happens this year, while the review is undergoing and there perhaps is not the kind of constraint on culling of mountain hares that the petitioner would like to see. That is something that the Environment, Climate Change and Land Reform Committee might be able to consider as part of our wider evidence around biodiversity and scrutiny of SNH. That was my thoughts and also what my colleagues from ECCLR Angus MacDonald also sits on this committee as well. I may have his own thoughts on it. Angus MacDonald, I concur with Mark Ruskell. I think that there is a strong argument to refer the petition to the ECCLR committee now, given that this committee would still be waiting on the Scottish Government's reassessment of the data on large-scale mountain hares culling, which is not available yet. While that information is coming through, it makes sense to just refer it to you, Claire. At the moment, to tie in with the other work that the committee is doing on this. We would be expecting that committee to perhaps be responding once the Scottish Government's reassessment of the data on large-scale mountain hares culling is available. In referring it, we would be highlighting that there is something that is an important aspect of it. The petitioner would not have taken it straight to—why did they bring it to petitions and not wait for the review if they thought that we were going to refer it straight to Claire? First of all, they would not have known what we were going to do with it. I think that the issue around that is one element of the petition. If we were going to hold on to petition, that is what we would be looking at. However, I certainly feel that the argument has been made quite strongly that to put it in the context of the broader issues of the subject committee makes sense, because it may be that once we go that information again we would simply be referring it on. I wonder if we are agreeing then that we would be referring this petition to the committee with a long title that I can never remember. You tell us what it is, Angus. Environment, Climate Change and Land Reform Committee. Is that agreed? In that case, we are agreeing to pass it on as described to the relevant committee. In that case, we can then move on to the next petition for consideration, which is petition 1683 by Jennifer Edmundston on support for families with multiple births. At our first consideration of the petition, we agreed to write to a range of stakeholders. The paper summarises the responses received to date. The Scottish Government sets out a range of policies and initiatives that it is taking forward. Those appear to be broadly welcomed by the petitioner and other stakeholders, including Tamba, the Multiple Bus Foundation and Homestat. They do however seek some clarity in some areas, particularly in relation to childcare and peer support, and consider that there is room for improvement in the level of emotional support and understanding among healthcare professionals. I noted in the evidence that the Scottish Government has the power to top up child benefit, but the evidence suggests that the Irish model of child benefit for twins, triplets and higher order multiples, is more fairer to those who have multiple births. I wondered whether, if we did write to Marie Todd, that would be considered within her response. There is an argument that that element of it would be around the Social Security Minister, who is now, I think that there is a question around that, which I would be interesting to explore. I was struck first of all by the quality of the evidence and the substantial evidence from Homestat, Tamba and, indeed, the petitioner. The financial issue is one, but the kind of supports that are around them, the fact that you have not planned to have two children, you have two children, the impact on your working life is the way in which you are going to be able to support your family by both being out working, the effect of that, but the emotional impact and support that people get. I suppose that I would be quite interested in how the Scottish Government sees their role in supporting some of those third sector organisations, because they are delivering, they have folk referred to them, but they are not necessarily having resources directed to them, allowing them to do their job really well. I am sure that all of us will know about Homestat within our own local areas, but I know that they do some fantastic work when families feel really under pressure. I would be quite interested in the benefit side of it and child benefit and what the Scottish Government is looking at around that, but how do they look at the emotional and personal support that families might require? I think that we should write to the minister for childcare in the early years and put those points to her. I will take it on from there. I will just keep it going. I separately write to Shirley-Anne Somerville regarding the funding aspects. I think that on the baby box point, which I thought was really interesting, people will have their own views about the baby box, but the idea that the second child gets that the non-reusable stuff would be taken from it, I thought was quite an interesting argument. I do not know whether the Scottish Government is refuting, and I am sure that they will be at some point in the baby box system, but looking at that, have they looked at the thought through what it means if you have got more than one child at a time or is there something around once you have got the stuff that is reusable? Are they going to amend the provision of the baby box? I just thought that that was quite an interesting and quirky idea and it might be something that the Scottish Government might want to look at. Sorry, Angus. I was just going to say that, given that we have the circular economy bill coming up at some point in the future, that is what we are looking at. Absolutely. Again, I think that we would want to recognise quite substantial issues here, the kind of issues that people probably have not thought about unless they have caught up in it themselves. We very much appreciate the petitioners' response and indeed all those who have given us such thoughtful evidence. We would want to write in the first instance to the minister for childcare in early years around this specific issue, around personal emotional support, but perhaps get an update from the new cabinet sector for social security around what they are looking at in terms of support for families as well, if that is agreed. It is a follow-up between my first time around. I said that it was a short but I can understand the issues. We had to make some decisions and who is going to go out to work with. I can understand a lot of empathy with this. Okay. Thanks very much for that. In that case, if we can move on to the final petition for consideration today, which is petition 1680 by Angela Flanagan on private water supplies in Scotland. As members will recall, at our previous consideration of this petition in March, we agreed to seek the Scottish Government's views in relation to the action called for in the petition. The Scottish Government's written submission explains that the private water supply Scotland regulations 2006 were reviewed and updated as recently as last year. The submission also states that regulatory powers over the drink and water quality of private water supplies should remain with local authorities and that it does not support the petitioner's call for an equal right of appeal in the planning process. In her written submission, the petitioner expresses her dissatisfaction with the Scottish Government's position in relation to the action called for in her petition. I wonder if members have any comments or suggestions for action. I was in Ayrshire the other day with the NFU and we had representation from one of the Ayrshire councils, the actual water expert, and it was clear that the councils have got a really good grip on this and are now implementing it. Certainly, it is causing some concerns with farmers, for example, on their own springs and things like that, but the general feeling was that there was a clear direction of travel with the local authorities implementing it. Clearly, it has obviously got some traction. I think that the fact that the regulations were reviewed and new ones were set last year and the Government has made it quite clear that they are not going to go beyond that, I think that we should close the petition at this point. I also convene her that it is clear to see that the Government is digging their heels in when it comes to the third party right of appeal. There does not seem to be any appetite at all from the Government on introducing that into the planning bill, but we will have to wait and see. However, that was one aspect of the petition that is not likely to move forward. Certainly, the thing around the community right of appeal, there is no doubt whatsoever that that will be debated in the planning process, and maybe the petition will be able to influence that. I think that the Scottish Government's position is clear about how the parliamentary work out, but that would be where that matter would be resolved. It felt to me that the idea that you would centralise—I could see the argument in one way, but centralise—the regulation of private water supplies probably means that people would be less aware of the very localised nature of some of the issues and very different parts of Scotland. Whether it is about monitoring closely what local authorities do and how close they are in terms of understanding some of the challenges that have been identified by the petitioner is one thing, but I do not think that the solution did not feel to me that the solution was to take that to the centre, because typography and geography of Scotland are so diverse in itself. I noted that the drinking water quality regulator for Scotland has been delivering training to local government and environmental health officers to ensure that they are up to date on rules and regulations. I think that that is the key point here, is that all local authorities are up to date with their training and they know what they are doing and they have a good handle on the situation, because, as you say, if it was changed, perhaps they would not have a handle on the local issues that were happening. I think that that was demonstrating. I saw it actually demonstrating the Ayrshire Hills, although in particular we were actually standing out of spring and it was explaining what happens. I was very impressed with the head of the water engineering of the local council. It was absolutely on the ball and they have done this for years. There are going to be local issues. One of the problems that came up was the question of a farmer fertilising the field and where was the water catchment area. It might change from year to year. That is local knowledge. You cannot put one size fits all. I think that there might be an issue about the capacity of local authorities to continue or maybe the need to underline to local authorities. That is a really important issue, so when they are managing their budgets, we know that there is massive pressures on them that it matters in terms of local communities and their health. Angus? It is not just a clarification convener for the benefit of the official report. I should have been referring to the equal right of appeal rather than the third party right of appeal. By any other name, possibly. It was back too many years ago. Yes, absolutely. I do not remember it well. As the planning minister, at the time we recall it very well. I think that we are agreeing that we are going to close the petition and understand in order rule 15.7 on a basis that there is no support from the Scottish Government for the action being called for in the petition, but I think that probably on balance we feel that the importance of regulation and protection of people's water is best done at a local level. If that is agreed, we would agree to close that petition, but to thank the petitioner very much again for engaging with the petitions committee and highlighting issues of concern to their own community. I think that, with that, we have nearly reached the end. Can I just wish everybody a very good recess and thank them all. I thank you all very much for your support in the last year in the work of the public petitions committee. I think that we can be proud of a lot of what we have achieved if nothing else allows people across our communities to raise issues that we may not have thought of otherwise, but they have been really matter to people, so we want to thank all those who have engaged with the petition process, thank our clerks and thank members, and wish you an enjoyable recess.