 Thank you. I call a meeting to order and can I welcome everyone to the second meeting of the Public Petitions Committee in 2017. Can you remind members and others in their rooms to switch phones and other devices to silent? Can we move to agenda item 1? The first petition this is on current petitions. The first petition for consideration this morning is petition 1601.2 by Graham McInley, when the criminal injuries compensation scheme changed to the same roof rule. We heard evidence from the petitioner at our meeting on 10 November last year. Errasing from that evidence session, we were keen to get more information on why the apparently arbitrary date is set for the application of the rule. The meeting papers include a note by the clerk and a copy of written submissions that seeks to explain the rationale behind the date. The submission from the criminal injuries compensation authority provides relatively in-depth background and adds that there have been some legal challenges to the same roof-row provisions. The Victim Support Scotland submission acknowledges that this was quote, the right decision at the time, but provides an example of the problems that the arbitrary nature of the date can create. It argues that the creation of a new scheme could provide consistency, clarity and fairness. The Scottish Government submission indicates that it has no plans at this time to either seek a change to the current scheme or to establish a separate compensation scheme. The petitioners' response to these submissions is set out and full in the note by the clerk. Can I ask members for the suggestions on what action we take on this petition? In the face of it, a level of discrimination here is the justice secretary. If you write to the justice secretary, there are really well laid out points here that we should be sending to him for his consideration. This was also a decision made a long time ago, but I think the Victim Support evidence that you have a different experience depending on where the abuse took place and when it took place, even though it may be the exact same abuse if I find that very powerful. While the Scottish Government has said that it has no intention or no plans at this time to change that, I wonder if, given Victim Support's comments, we might ask them to reflect on that and whether that would mean that they would maybe look at it further. I think that that would be the route to go down at this stage, just to seek clarification on where they are now with it. I agree with that, too. I think that the petitioner does make the point that he feels that somebody needs to sort it. I suppose that the question might ask the only people who can support it now, the Scottish Government. I suppose that there are issues for them. It seems in the past that the concerns seem to be about that no-one could even assess the potential cost of having a retrospective legislation, as opposed to just prospective legislation. That may still be the case, but it would be worth having that conversation with the Scottish Government. If that is agreed, we will agree to write to the cabinet secretary and write to response points that were made by Victim Support Scotland to find out more information on why the Scottish Government has no plans to consider establishing a separate compensation scheme and, perhaps, reflecting on the Victim Support evidence, whether that is giving them potential to consider it further. If we can then move on to petition 1616 on parking legislation, the next petition for consideration is petition 1616 by John Shaw on parking legislation. Members will recall that this petition is seeking to make it an offence to park in front of a dropped kerb. The meeting papers include a note by the clerk and a copy of the written submissions received. The issue of responsible parking was raised in a member's bill by Sandra White MSP in the last session of Parliament, which fell in part due to concerns about legislative competence. Further powers have now been devolved and members will see from the submissions received that the Scottish Government will shortly be consulting on responsible parking with the view to legislating on the issue. The Scottish Government has advised that the consultation process is due to be completed by the end of March this year. The Scottish Government also explains in its submission that it has established a responsible parking stakeholder working group to inform the development of the consultation. I wonder if members have comments or suggestions on action. Can you just wait until we get the results of the Government's consultation in March? I did not think that you would be fair to push that any further until we know the results of that. I do not think that we should close it. I think that a defer to them would be the right course of action. I think on balance we should defer it. I was a bit torn, I would be honest. I was quite torn with this one about whether, because of the consultation and the likelihood that legislation would be brought forward, I do not know, because it can always come back. But I think on balance it would not do any harm to defer it. I think we should defer it until the consultation closes. I think it would be fair to say that we welcome the fact that the Scottish Government is consulting and probably recognise some of the challenges and all. So the issue is out there and it has been investigated? You can understand absolutely the issues that the petitioner has addressed has raised. Then sometimes you go about the certain communities in which I both live and work, can you think? What would be the consequence of this? It would be a challenge of being dressed to see what the consultation process brings back, but there is certainly no doubt that the impact of irresponsible parking in particular groups is massive. We agreed that we will defer further consideration until the consultation is complete. I do not know if we need to say this to the petitioner, but I am assuming that the petitioner will be engaged in the consultation process itself. It may be that something more generally people would be interested in responding to. If that is agreed, we can move on to petition 1617, a proposed health study on vaccinated versus non-vaccinated. The next petition is petition 1617 by Angus Files, calling for a health study of vaccinated compared to non-vaccinated people. The Scottish Government has responded to a request for its views on the petition. That response provides some telling statistics and makes it clear that the Scottish Government has no plans to carry out such a study. In its submission, the petitioner contains that what he is calling for is a retrospective study using existing data. Do members have any comments on how we should proceed? Do not look at me. I am going to turn to this. I find it quite interesting in the suggestion of an ability to collect data on this. I find that quite strange. Is that not because in order to have data you would have to people that were not vaccinated? They did not know that they were not vaccinated. My presumption is that the vaccination has saved lives as eradicated diseases and it can only be done by doing it on mass. I suppose that the data that can be collected is exactly that around the occurrence of disease over a period of time. That kind of data must be available. Having said that, I am not necessarily sure what the data would tell us. I am not sure what can really be achieved by it, because I think that the vaccination programme is so important. I really do not think that it is feasible what it is asking. I cannot go into the point. Angus? In addition, convener, the Scottish Government is quite adamant that it is not prepared to move on this. I do not see where we can go if the Scottish Government is digging their heels in with some very valid and salient points. I think that we have no option but to close the petition on the basis that the Scottish Government has confirmed that it has no plans to commission a study as proposed by the petitioner. It does not feel to me as if there is a pressure on the Scottish Government coming from the medical profession or more broadly to say that it is presumable that there is an issue here about whether vaccination works or not. I think that the view that I would hold is that there is evidence that vaccination does work, but in most cases it is only works if everybody gets vaccinated if there is a general population that is vaccinated. I do not think that we should close the petition on the grounds that Angus is saying, because I think that the proof is there already. On the basis, I am not sure that the actual date would tell us anything. I am with you on that. Interesting, no? It is. We are agreeing then to close the petition on the basis that the Scottish Government has confirmed that there is no plans to commission a study as proposed by the petitioner and provides evidence to support that position. Does that agree? If we can move on to petition 1618, more powers to the police to combat motorcycle theft. The ninth petition for consideration day is petition 1618 on combating motorcycle theft by Carol Grundy on behalf of the riders club in Edinburgh. The committee has received submissions from the Scottish Government and Police Scotland. It is calling for the police to be given more powers in this regard. The Minister for Community Safety and Legal Affairs submission noted that in her view, Police Scotland has sufficient powers to tackle the issue. She explains that the Scottish Government takes a tailored approach to young people's individual needs and a focus on early intervention and diversion where possible. She explains that issues about sentencing are a matter for the court and driving offences are reserved Westminster. Police Scotland has launched Operation Soteria to address the issue. It has conducted youth engagement activities as part of this work, which has reeled that the crime is driven by thrill seeking behaviour and peer pressure. Police activity is therefore focused attention on diverting young people from the crime through engagement and outreach. In its view, a multi-agency approach is required to tackle the crime. Members will also see that a number of us met with the petitioner informally to discuss the terms of his petition. A summary of that meeting is provided in the clerk's note. He raised a number of concerns about community safety, insurance and also the impact on motorcycle tourism. I wonder if members have any comments or suggestions for action. I had a chat with some of the sub-Edenborough MSPs who are informally to gauge their one if they have something that they recognised or to what they thought about. What seems to be coming back is that they know what is an issue and that the police have actually started to tackle it after that we met with the petitioner. So, I would be keen to… The early intervention time I think is something I think is very interesting. I wonder how we could further that and understand how that is working. Would it be worth speaking to the police on this matter or a youth link? I just want to understand where this is going so that it is being affected. Police Scotland's letter from last November, they have clearly taken it on board and there have been so many initiatives put into trying combat this. I think it is fairly comprehensive what they are trying to do. I think that the multi-agency route would be the one to go down and certainly write to youth link and find out what they can suggest. I cannot think of any other way that the police can be more proactive on this, albeit that there is still a huge problem and that it is acknowledged that. Is it a really difficult one? The petitioner just lifts off the page there, frustration and not because they do not want to engage with young people, they do not understand it. I think even when we met with them. I do think we should write to the police and to youth link Scotland asking for their views and get an assessment of how effective this is but partly because the petitioner might seem to me to say a lot of these things have already been tried and the frustration is still there, the impact and their ability to enjoy what they like doing around motorcycles and the cost to them and so on, is massive. I think also Jeremy, it would be worth of our writing to visit Scotland to seek their views as well because we are seeing that the trend is in the summer months and what have you in that circles when we have our tourists and I think that might be useful. We are agreeing to write to youth link Scotland, write to visit Scotland and I am supposed to recognise that we would be interested in how these interventions are actually working because it is one thing to say you have them as the minister describes at multiagency or whatever. I cannot remember what phrase he used but it was something very unusual phrase but it felt to me that the petitioners had heard all this before so it would be some sense that they were then taking that really seriously and proactively on it. I mean I understand why Scotland are monitoring the levels of it, it would be good to know whether it is actually rising or decreasing, maybe it is past its peak hopefully and maybe it is a trend that is going to go away. That is the optimistic side, it would be good if anybody was actually monitoring the level of crime in this instance. I think that it is fair to say that we do recognise the trend, the feeling in this petition and the concerns that people have and our view that this is something that needs to be sustained if the petitioners kind of concerns have to be addressed. If that is agreed we can move on to petition 1621, sepsis awareness diagnosis and treatment. The next petition is petition 1621 by James Robertson on sepsis awareness diagnosis and treatment. The clerks note provides an overview of the submissions received with comments from the Scottish Government, healthcare improvement Scotland and NHS boards referring to the Scottish patient safety programme and the prioritisation of sepsis as a workstream within that programme. A number of submissions refer to sepsis six and the national early warning score system and health boards indicate support for the action called for in the petition while noting that there has been a demonstrable increase among healthcare professionals of the awareness of sepsis. The petitioner, however, notes the comments of some boards in relation to any unintended consequences of a public awareness campaign and relates the coordinated approach to raising public awareness developed across the country. The UK sepsis trust and the Fiona Elizabeth Agnes trust provide illustrations of the work that they have undertaken to raise awareness among health professionals and the public. We were commenting on the number of submissions that we received. I would certainly think that we would be appreciative of the fact that so many people have taken time and the boards have taken time to respond, but I wonder if members have any comments or suggestions for action. Can we recognize the outset? I register an interest. The petitioner is a constituent of mine and he asked me to say that he hasn't in his submission, he didn't make comments to the Fiona Elizabeth Agnes trust because he hadn't seen it at that point, he just asked me to mention that. But I'm supportive of this petition and would suggest that we write to the Scottish Government to see if it has plans to institute, to start a public awareness campaign across Scotland, other than that. Some of the boards have said yes that the awareness has been raised and they are doing what they can, but I think that it's a big, big issue and I think that there needs to be an initiative to say that we're taking it on board and it has to be rolled out. Any other comments, Angus? Yes, thanks. I'm struck by the fact that in relation to raising awareness among the public, Dumfriesent and Galloway, Fos Valley and the Western Isles health boards have raised concerns about potential unintended consequences and that it might cause alarm and generate an increase of worried patients attending a GP practice or ANE. Perhaps it would be good to get the Scottish Government's stance on that if we were to write to them. Just to clarify this, maybe our balance has to be made. Sorry, I think it's important to get the Scottish Government's view and obviously establish where they are on this, because as Angus was saying, there's differing situations through the counties, so I think it's important that we need to establish a base on this. I think that it would be a bit concerned if he didn't have a public awareness scheme in case people became publicly aware. People who are worried well or people who are prone to be concerned about conditions, I wonder if that must be more than balanced out by making professionals and people aware of how they can keep themselves well. We're agreeing to write to the Scottish Government to ask about its plans for a public awareness campaign and probably the point that Angus makes is what judgments do they make round this question of unintended consequences? If that's agreed, we can move on to the petition 1623, unelected church appointees and local authority education committees. The final continued petition for consideration this morning is petition 1623 with Spencer Fieldies on behalf of the Scottish Secular Society relating to unelected church appointees and local authority education committees. The meeting papers include a note by the clerk and copies of the written submissions received since our previous consideration of this petition in November. The Scottish Government indicates that it has no plans to change the provisions but it refers to its education governance review, which has recently closed and which sought views in the legislative framework that should be put in place to support education in Scotland. COSLA regarded that review as an opportunity for community representatives to participate actively in the consideration of education services. It also noted that, with regard to the action called for in the petition, its members did not feel that non-elective representatives carried un-duose influence. Submissions from Muslim and Jewish representatives did not directly support the action called for in the petition but considered that there might be options to more widely reflect diversity in communities. The Scottish Parent Teacher Council suggests that education committees could, quote, reflect the population of our schools more effectively. The Quality and Human Rights Commission referred to its submission on the previous petition, this issue, petition 1498, particularly its comments on the requirements of the public sector equality duty. That was echoed by representatives of the Jewish community and was also noted by the petitioners who note that, to date, none of those issues have been addressed. The petitioners maintain the position that the system is unfair and discriminatory, particularly in the light of changing demographics. I wonder if members have any comments or suggestions for action. We need to get asked the Scottish Government for assessment, now having carried out the education government's review, and asked to assess the position of un-elected church appointees in terms of the public sector equality duty and, obviously, referring to the question of faith community appointees as well. We are looking to find out the timescale for when they published their findings in the governance review. At a separate point, it is clear that they are not planning to address this question, and I do not think that there would have been a specific question in the consultation, in the governance review, whether it is something that people would have to bring themselves, but we can ask them that. I wonder whether the position of un-elected church appointees in terms of the public sector equality duty would be something worth checking, whether they have reflected in that in their own decisions. Do we just need some more information about what was in the review? With regard to the education governance review, I think that the closing date for submissions was 6 January, because I was showing a specific local interest in what my own local authority was submitting, so it may be some time before they get round to replying, given that the submission is just closed. We are not proposing to close the petition until we ask them specifically whether they have followed their own responsibilities around the public sector equality duty. To me, there are strong feelings on both sides of the argument, and what is interesting is whether there is a middle ground somewhere that people are aware of. However, we want to know about the governance review and if anything comes out of that, but whether that point is raised by the Equality and Human Rights Commission. I can only assume that the Scottish Government will, in responding to any of those questions, will have taken—because it is an obligation on them—that they will have assessed it in those terms. Is there anything else that people think we should be doing from the petition at this point? If that is agreed, we can move on. Can we suspend briefly until we bring in the witnesses for the next petition? We will bring the meeting back to order. We are now dealing with agenda item 2, new petitions, and the first of them is petition 1628 on consultation and service delivery change for the elderly or vulnerable. I welcome Mike Russell, MSP, who is in attendance because he was interested in this petition. The next petition is petition 1628 on consultation and service delivery change for the elderly or vulnerable. The petition is by R. Maxwell Barr on behalf of Strew and Lodge Development Group and Dunoon Community Council. Mr Barr joins us this morning and is accompanied by Kenneth Matheson, convener of the Dunoon Community Council. Can I thank Mr Barr and Mr Matheson for attending this morning? I invite you to give a five-minute opening statement after which I invite members to ask questions. We are very grateful for this opportunity and I am sure that you have all managed to read the petition. I will not go over that in any way and just move on to some of the key points coming out of it. As you know, the petition is about the guidance in respect of changes to service delivery and health and social care. When I look at the guidance, the guidance in informing, engaging and consulting people is issued through CELV4 2010 and it relates to a period, therefore, before the integration of health and social care. As a result of that, it is also before the existence of integrated joint boards and only refers to NHS boards. It therefore allows an integrated joint board and any health and social care corporate bodies to dispute the legitimacy, in fact, of the guidance to these bodies. I think that the spirit obviously is that they should accept it, but the fact is that it does give them the chance to object to it. Within the guidance there are one or two things that I would like to point out as well. In clause 8, the guidance refers to bodies that certainly no longer exist in Argyllin buton. I think that the names have been changed and new bodies have been created, and therefore they do not exist in the local areas. That, again, leaves scope for missing out people. Two particular issues in clause 14 in the guidance states that the Scottish Health Council does not comment on clinical or financial issues. Therefore, if a board decides to treat some change in service delivery as a clinical or financial matter, it can exclude the Scottish Health Council from comment. In Argyllin buton's case, we had a financial plan created last June, which dealt with the eviction of 12 people from a care home within six months. There seemed to be no need to involve the Scottish Health Council in this, despite the fact that I would think that, under any circumstances, kicking 12 people out of their home is a major change. Equally, if the board prepares a plan to save money with 68 individual actions in it saving a total of £8 million, it seems to me that, although the board seems to think that individually none of these are minor changes, it seems to me that 68 all-at-one saving £8 million is also a major change. These major changes need to be considered by the Scottish Health Council so that the boards know how to go about their consultation and their engagement and communication. In our case, we're eight months beyond a decision being made and the Scottish Health Council have still haven't decided. It does seem to me that there needs to be some way of dealing with that. These are two very specific points I make and they indicate the difficulty. The Scottish Health Council has a difficulty, I think, because it's got a co-operation function and a monitoring function with the work of the boards. These are examples of how the guidance needs much more clarity in respect of that relationship. That clarity would be helpful where the board doesn't consider a major change, but the community stakeholders do. If that's not identified beforehand, we move on and there's a process of engagement that takes place and then if it becomes a major change it's too late. That needs to be resolved prior to any decisions by boards. A little bit on the detail of how the board should communicate and engage with the communities. The guidance allows boards to develop their own processes and that was fine, but it would be also helpful if the guidance compelled boards to publish that communication engagement process because there are, in some cases, bodies much like our bodies that are not normally in the engagement process but have an interest in something specific. And if it's published we could then apply for inclusion and rather than be excluded from the start. Really just a final point on the guidance. Boards would be paving it in a proper manner, don't really need guides. The thing happens quite normally. The openness and transparency would be there so they would have little need for guidance. But when you get a board, like the Iergyll and Bute IJB, who failed in this regard last June, when you require guidance and that guidance really needs to be far more clear and definitive in order to ensure compliance. We're concerned not just about Iergyll and Bute but this is a new setup for the integration of health and social care and there are bound to be other integrated joint boards throughout Scotland that are going to run into the same problems. Thank you. Thank you very much for that and I think that certainly in reflecting on what you've said, what we're interested in in your petition is what are the general lessons to become from a specific experience where we are keen to kind of explore that with you. Do you think part of the issue is that you're dealing both with local authority forms of accountability and engagement and health board ones and I would have thought that some of the organisation that might get involved at a local government level health on the health side would not necessarily be consulted and is there something that we need to do around that? It's an interesting fact, we had it. We had an interesting point in that particularly the Strew and Lodge and this is very specific when I talk about this run but with Strew and Lodge there was the council move to close the home three years ago and the community disputed that and it was kept open. In this particular occasion now that it's an integrated joint board it was kept open largely because of the political dimension and the ability to go to your elected representatives and get them to do something. In this particular case we weren't consulted before it happened, the board made a decision in June, they were given a number of opportunities to change that decision at board meetings prior but we then had to get the intervention of our MSP and our local councillors before there was and it has now been an intervention and there's a pause in the process and we are having some community engagement which is working reasonably well but there's still an argument whether it's a major change or a minor change and it's your point that if it's defined as a minor gem is a broader question that we're all wrestling with across Scotland, if it's defined as a minor change if that's the change it's too late by then? Absolutely, we've got a situation where we're being consulted now about something that's being decided and when you make comments about it the public just come along, we had a public meeting and they say but what's the point in talking to us, you've decided what you want to do and that doesn't help in any way to get the public on side. I mean we're talking about a funding issue and everybody understands and recognises that money is sure, there's not hundreds of thousands of pounds around the world that we can draw on for these things but therefore it's important that communities are involved and get together to try and find ways forward that will work for them. Okay, thanks for that. Rona Mackay. Thank you. Good morning Mr Barr, Mr Matheson. Can I just ask you Mr Barr, can I return to the issue you talked about in your opening statement about guidance? I just wonder if you could expand a wee bit on that and maybe just give us your key point specifically that you would like to be included in the guidelines? Sure, I mean the first one is obviously that it extends to integrated joint boards and then that the clarity about what is a major or a minor change is absolutely fundamental and that any communication with the local communities has to be before the decision is made, that's the key to the whole thing. There's no point in doing it afterwards and then making sure you get to the right bodies because the other thing you find is that there are a plethora of local groups and it must be very difficult for the board and for the health and social care partnership to know exactly who they should go to which was the other point about compelling them to publish their communication processes in advance so that groups that have an interest can apply to be involved. A better signposting then is what you say. Okay, thank you for that help. Maurice Corry. Thank you, chair. May I declare an interest? A couple of things, chair. I'm a councillor with Arganbu council and I was also chairman of the IJB board that integrated joint board in June 2016, so I'm fully aware of what Mr Barr is talking about and indeed the angle that he's coming from. I think it's important that I would like to keep this as a generic level as to what we can do to learn lessons if that's the case and what we can do to do things better. I am aware of the six months moratorium that's going on at the moment and I welcome that to try and get this resolved and also to get greater engagement with the local community. But Mr Barr, your petition mentions how decisions about service delivery can be particularly distressing to service users and I can concentrate on that. What could be done in the consultation process in your view to minimise the stress caused to elderly or vulnerable service people whilst ensuring that their views are heard, which is really relating back to my comment. I find this easy from a Struan Lodge point of view, more difficult from a general point of view, because we did have a Struan Lodge development group, we had a strategy document and what could have been done, we could have been properly consulted over our strategy document and what it was about and we could have been engaged in talking to the relatives of the residents of Struan Lodge so that you come back then when you're looking at all the other care homes around the country. The key is you have to engage with the relatives very, very early and you also you have to also take on board when you're dealing with vulnerable adults and well into the 90s, some of them, that you can't shut something like that in six months and if you've got a financial problem you have to work around that because it takes far longer to deal with it. If you throw a 90-year-old out of a care home within six months they don't fit into a new home. We had a resident came from Bute to Struan Lodge and they were lost for a while. They wander around the care home lost and unable to know what to do so it really is important that the residents and get consulted and dealt with early on. Can I just further as you are aware in brief I asked a question in the chamber to the Minister of Public Health or sorry to cabinet secretary but in fact the Minister of Health, Public Health and Responded Chair and it was quite clear that statutory responsibility for delivering commissioning services at a local level is left to the NHS boards i.e. the joint board so that's something that maybe we need to address later on but I welcome what you say and I think one has to be big enough to say that this is aneric issue that we need to look at is it happening anywhere else in Scotland and I thank you for bringing this to our attention and I say it is a very difficult one to do and I think the engagement certainly with the families is an important point as well. Good morning Mr Barr, Mr Matheson. Your petition specifically focuses on the elderly and the vulnerable and vulnerable and I wonder if you consider there's other groups in society that may be particularly affected by how the consultation process is conducted? Our interest has been because of Strew and Lodge and so that we have concentrated in that. What we've been trying to do within our strategy document is look at the other aspects and again I think mental health would be an issue where the guidance would need proper because again you're dealing with very vulnerable people. It's about dealing with vulnerable people at any level basically. It doesn't matter what age they are. Angus MacDonald. Good morning gentlemen. It's clear from your experience that local authority budgets have an impact on the delivery of services and clearly influenced decisions on service change. Do you think that greater awareness and public involvement or public engagement is required in the budget setting process? Would that help? I think that could be created by consulting and talking to people and having more meetings and public meetings. I think those of us who are involved have certainly aware and basically I mean we are looking at what we what we can provide to help the IJB and we are producing a document just now which we hope to publish by the end of this month and really we're looking at trying to raise money find ways of being commercial about it if you like which a bit isn't really something the NHS or the council tends to think about but in fact if there's no money and I can't expect governments to be just handing money out there just isn't money so the communities in the local area have to look at these things themselves and see what they can do to help and that's that's where we're coming from now so I think there's there's a growing understanding that there is not enough money because everyone's suffering but there's also priorities are a big issue as well. Mr Matheson. Yes, I'm also with Max on the Struan Lodge Relant Group and also a staff member for 10 years at Struan Lodge. The way we've been treated again shambolic the IJB 29th of June decided to close Struan Lodge 24-7 care it was leaked and they were running around madly trying to get staff together in a meeting. There was letters put out to family and residents which were not applicable really and we were told we were shutting in six months that was it. Decisions made, decisions final were answerable to nobody. This happened three years ago and we've still got some residents there who were there three years ago. It's very hard on them, it's very hard on the staff members to be treated this way. The IJB have failed miserably on their consultation. I am in the comms engagement group and it's the conversation cafes the way they went down which the Rwm Cymru council had a motion put forward that was not the way because we knew that even though the outline districts are very, very important, really important. I think that only about 3,000 people in the outline areas and there's 12,000 in our area and I had to fight to get more meetings in our area which was agreed to at the last time. The last time I tried to shut it there was 47, 48 spare beds now none. So where are they going to put our residents? We asked all over Scotland with a reply. Why don't you go and move aside your daughter and put her in a care home there? It says unbelievable. There needs to be something done. Now if that's not a major change I don't know what is. This major change should be done first. It's just been back for a long way round. When you go to the IGP it's like inverted pyramid. The officers who I have met with do not give us information for dealing. We've had to go to Mr Russell another local councillors to get information and even they struggle to get information for them. I don't think it's acceptable to be treated this way by MD and there needs to be some accountability. They have seen just now that it's a tick box exercise. I asked them what would happen at the end of this. They said nothing. It's shutting. So how is that informing and engaged? If you say consultation to them, they choke. It's not consultation. It's informing and engaging. They have nothing to inform us with because they don't know what they're doing. Thanks very much. To be clear we're not investigating what's happened in a specific issue. If we were there would be people presuming we have a position that would be separate from that but I do think it's important to try to understand what the process is. No, I appreciate that. You clearly have very strong feelings on it. You're entirely within your rights to say that. I'm not about to recognise that. What we're trying to do is try and draw the general conclusion. Can I maybe ask Mike Russell to come in at this point? I think that Maurice Corry is right to say what can we draw from the particular to the general. I think that Kenny Matheson has indicated how strong the feelings are about the particular in this case. In fact if we learn from this particular in our Gail and Bute and with the IJB I hope that it will lead to what Max Barr has indicated would be an improvement in guidelines and the new set of guidelines because it is the poor performers that require guidance. Those who do things properly don't really need that guidance and the IJB in our Gail and Bute has been an exceptionally poor performer. There are a number of proposed major changes within our Gail and Bute including Stran Lodge, Ock and Lee in Campbellton and other issues and in all those cases the quality of the consultation has been exceptionally poor. Decisions are made without consultation and everything is done to avoid public scrutiny and that is what has taken place. It is important to note that in some communities such as in Danun active groups that I pay tribute to Max Barr particularly who has done a power of work on alternatives over the last three years has always been a full-time job just have not been listened to. Those who cannot perform to the highest standards for consultation need to be encouraged and driven in that direction and for their Gail and Bute IJB it means three things and perhaps these are the general lessons. The first thing it means is that there must be an explanation of process before that process is implemented so people know what's going on. The agenda on which this decision was made was crowded it contained a great deal of information actually nobody knew it had been made including some of the members of the board. So absolute clarity about the process, a clarity about no decisions being made until consultation has taken place not after consultation after decision which is perverse and thirdly the nature of the consultation. Kenny hasn't indicated this conversation cafe's idea this is to be blunt convener and I know you know I'm often blunt this is gimmick written nonsense. It is important that you step forward and say this is what the board is proposing let's discuss what this means and how we could go about it because and people are not resistant to change if it is explained to people and if they participate in that decision but if there is an attempt to enforce change by sleight of hand and that is what we've seen then that there is undoubtedly strong public resentment. So I do hope that the particular in these cases can inform a general set of guidelines that will drive poor performers such as the IJB into far better performance and it's early days for them and therefore there's great disappointment that they've chosen to behave in this way. Thanks very much for that. I think the question of the cynicism that people feel if they're going into a process with the decisions that are ready to be made is deeply frustrating although I am interested in this separate question about how you make the big changes general changes while individuals understandably are going to be focused in the individual service we see it in hospitals or anywhere where there's a proposal to close something down for perhaps for the greater good but for the very specifics I think that is a challenge and I think it would be interesting to know the Scottish Government's view on that actually how do you manage that process of change when for the individual they're not actually that concerned about how it fits into the bigger picture they're concerned about the impact directly on their own perhaps in their own work situation or on their on their families and those they care for. I wonder if there are any suggestions then I don't know if there's anything we want to say. I'm just taking your point it is actually a very difficult situation because you're talking about major changes to different things and it can't be easy for any board to decide which ones are important and that they have to go and consult but at the end of the day the problem seems to have been in the past that there's been processes set up and it becomes cozy and I think there needs to be something that allows that they need to find a way of getting to the nub of the problem with the people that understand it. We had submitted a strategy document and we weren't even asked about it we weren't asked what do you think you should do we had a long term strategy for strewn lodge and it didn't involve it wasn't just about 24-hour care it was about use of the hospital it was about use of public assets that are not being used properly at the moment and these things need to be addressed. Thanks very much for that and again I think there are very interesting issues there even a proper understanding what's a major change what's a minor change and again that kind of cynicism of you define it off as a minor change it doesn't have to be scrutinised elsewhere I think these are again I think matters that the Scottish Government must be wrestling with because I think they are very difficult issues. I wonder if the members want to consider how we would want to take this petition forward. I think we recognize that there is significant strain on the care home sector at the moment and closing any or considering as you very alluded to chair the closing any facility like this is highly emotive and I'm an amazing very difficult for any IJB to speak to but to speak to Mr Russell's point of public scrutiny and uniformity of public scrutiny across the world I think that's something we can take out of this for sure. I would be really interested to hear the Government's view on how we can I mean it's generally it's the real IJBs are a fairly new initiative and I think I would be interested to hear the Government's view on how they can make this sort of public scrutiny scrutiny some sort of uniformity. And ask the Scottish Government just to reflect on the request within the petition in terms of petition at sale. Is there anyone else that we should be contacting? I'm interested. Sorry on you go. The issue is around rural care homes and that goes back to my question raised in the House in the Chamber and I think that from that we can we can again up and probably drill down more with the Scottish Government on the policy on that. I mean it's it's not sufficient to say well it's left the responsibility for local government it is a national issue and that was I made that very clear in my question so I think I did with Mr Bile and his team's comments and I am aware of the strategy in the document that the action group drew up to three years ago and in that was a valuable comments but it's a big issue. I mean I think we can greet right Scottish Government in those terms and in those issues perhaps NHS Scotland as well in their views and the Scottish Health Council presumably around their own terms of consultation. I'm actually also interested in the lines of accountability where both the Scottish Government has devolved to the health boards, local government, they're now part of this joint board. Is everything become a bit distant and it's much more difficult for anybody to say you've directly made that decision? It would be maybe worth contacting COSLA about how they perceive the joint boards to be proceeding and is there attention even round those issues of accountability? I'm also just asking in the letter about how they plan to monitor the integration, delivery of integration just to keep an eye on who it's actually working. Thank you. I think speaking to the Scottish Health Council, I think from me and perhaps even social, from me what Mr Barr has brought to the table here is each person is an individual. It's an individual case and it can't be seen in the whole. In these cases we have to consider people's individual circumstances and rights. I think also this question that we are now being asked to consider is care in the community and that's really a fundamental issue and if we're doing that I think some of the parts of the drinks are not there yet and that's again important why we need to go back to the Government, NHS Scotland etc as you said to get the whole thing together. And one maybe last suggestion is to contact Audit Scotland to see how they would be looking at this in terms of monitoring how this has been processed. Giving evidence to another committee but thank you so much. Far be from me to keep you away from that committee where someone's going to ask you a hard question about a change. Thanks very much. I think there's quite a substantial number of things that we're suggesting there. I thank Mr Barr and Mr Matheson for their attendance in the presentation and we will obviously be coming back to you once we have got response to the correspondence that we've created in terms of your petition but we can thank you just now and can I suspend the meeting briefly for a change over our witnesses. Bring meeting back to order and return to our agenda. We're now dealing with petition 1629 on MRI scans for ocular melanoma sufferers in Scotland. The petition is by Jennifer Lewis who is here to present evidence to us this morning and is accompanied by Ian Galloway who is a member of Ocumel UK, a charity that supports sufferers of the condition. Can I welcome you both to this morning's meeting and can I invite you to make a brief opening statement of up to five minutes after which we'll move to questions from the committee. Good morning. My name is Jennifer Lewis, a 52-year-old sufferer of ocular melanoma. My tumour was identified during a routine eye test at SPEC savers. Thankfully it was a very good optician who noticed it. It's known as caroidial ocular melanoma for which I had treatment in Gartnaval hospital in 2013 with plaque radiotherapy. At that time I was informed that at the point of diagnosis I was informed that this type of cancer was very rare and could potentially spread to my liver and I would have to attend Gartnaval hospital for the remainder of my life for surveillance scans. Also the Scottish Right representative for Ocumel UK whereby I am the point of contact for newly diagnosed patients in Scotland who would ring if they need any support. They would phone me and phone the charity in England and the local point of contact. I would never have received support for this cancer which I'd never heard of if it hadn't been for this small one and only charity in England. I would never have had the opportunity to meet other sufferers of this rare cancer if it hadn't been for our charity in England. I'm here because I would like to bring it to your attention that in Scotland we're only offered ultrasound, abdominal ultrasound scans to try and track any metastasis to the liver yet in England fellow sufferers and patients are offered MRI scans which give sufferers in England the chance to for their cancer to be detected early to have appropriate treatments and to be entered into clinical trials. In Scotland we don't have that opportunity and that's what I'm here for to try and urge NHS to change their opinion that ultrasound scans are sufficient. I've brought Ian with me. Ian represents Ocumil UK but he is also a sufferer whose cancer has moved from his eye to his liver. Yeah, hello. My name's Ian Galloway. I'm a stage four ocular melanoma sufferer. Seven or eight years ago I picked up my eye. I was given plaque radiotherapy where they sew on a radioactive plaque onto the outside of your eye and leave it there for three days. It burns the tumour off unfortunately two years later in 2012 it started growing again so they've removed my left eye and I now have a prosthetic left eye and 18 months after that and thankfully because I was receiving six monthly contrasted diffusion weighted MRI scans they picked up metastasis in my liver which is 90% of the time this is where the disease spreads and 50% of all sufferers get metastasis. It's a very common spread with this cancer. Most you know half of the people have spread over time but thankfully because I was picked up quite early I was able to have the cancer removed and that was in 2013 and to date my scans have been clear and I live a full life. I've got a young family, a young son, I work full-time and most of the people I meet who have survived the metastatic stage of the disease for any number of years when you speak to them they've always without any exception that I can even think of or have come across had MRI screening because that picks up the disease at a point where it's able to be treated with ultrasound because it often appears in lots of different lumps. It's not just one discreet nodule or lesion. By the time you spot it there might be dozens of a similar size and it's too late to do anything and that seems to be the case across the globe and we've collated a set of patient stories for you. I think I go from Tristan to hand out but at some point we'll get them to you and which summarises our position and again I'm here with Jenny because I work on behalf of Ocumel UK. I also run the NPN, a European rare melanoma group and I spoke at ASCO which is the American Society for Clinical Ecology's annual meeting in the US in Chicago. We were talking about patient involvement in screening and patient directed research. Thank you very much and yes we will circulate the evidence that you've brought with you today and we certainly look forward to looking to reading that and obviously like many of those things that come before the petition committee. Our first experience of an issue is because of our petition so I can thank you very much for that in itself. It's bringing to our attention and more broadly the Scottish Parliament and a condition that probably many of us will never have heard of. Can I say that in the first part of your petition somebody called for NHS Scotland to recognise patients with ocular melanoma and in the background information you say that GPs do not understand this condition? What do you think might be the reason for GPs not understanding the condition and do you have any thoughts on how this understanding might be improved? Because it's so rare and the number of patients, the number of patients in Scotland that present to their GPs is minimal. And has there been any work, I mean but the difference is in the rest of the Kingdom you're saying there is more awareness I mean what do you think has allowed that to happen? I think I mean for my own personal perspective and certainly those I've met I mean doctors aren't aware of it because it is a very rare cancer I think it's six or seven in a million people per year have this and sometimes you speak to a GP and they say I've only ever seen this once before I've never seen it before. Often you rely on then getting referral to a specialist centre and I think key has been the referral to specialist centres and so people will go to more fields in London or Sheffield or Liverpool and at that point the patient will be given leaflets and information because there are specialist ocular oncologists but it usually involves the patient's GP acknowledging that they don't know much about a rare cancer they can't know everything. In my case my GP was just very proactive and did some research but that obviously isn't the case for everybody. They escalated me to a local eye centre and then recognise that there was a lump in my eye and at that point I was seen by a specialist centre so so the more rapidly you can be referred to a specialist centre not just secondary care at a local consultant but then a tertiary care centre of which there were three in England and the better and that's where the more information about the disease can be imparted to patients. I don't think it's possible at the absolute lowest primary care level because it's so rare. Okay, thanks for that. Morris Corry? Yes, thank you very much indeed it was interesting and high opening. Do you think there is a link between any lack of understanding of the condition and the absence of the provision of MRI scans if both of you would like to answer that? Most certainly. I think what's unique in this cancer is that perhaps with other cancers you have screening regimes that take place subsequent to the primary disease having been resolved perhaps in breast cancer screening and so on but there doesn't seem to be a because it's a rare cancer there isn't much in place at the moment and there's little understanding of the disease however because in 90% of the cases when it metastasises and this is in 50% of all cases you're going to see liver metastases and most of them are going to be appearing this kind of peppered what they call miliary that's kind of dotted throughout so you can't cut them out. If you take 100 patients with eye cancer within five years 30 of them are going to be found to have metastases in the liver that's unreceptible a further 20% will present in elsewhere sometimes in the lungs sometimes in the spine but lot very by and large you can find these metastases and you know where to look so with ocular melanoma it's on a plate if you like you can just look in the liver and receive MRI scanning and you will pick up 30 of these patients with whom you can then do something which you couldn't were at the coast of the ultrasound because ultrasound is often picking up the disease too late to do anything about it because you're getting dozens of these typically as I mentioned is diffuse nature you have dozens of lesions and if you see one at one centimeter bigots you've got dozens of that and you've usually got 25 to 50% liver involvement and it's too late if however you pick up this with MRI scan there are now lots of new treatments I'm talking about the last two or three years that are keeping people alive for a long time with high quality life and in some cases they're curative and I think to answer the question directly that is because there's a lack of understanding about the nature of the disease and it's metastatic presentation if you like. Thank you. My experiences are being sent for ultrasound scans Gartnaval tend to push people out to local hospitals rather than do the scans themselves the local hospitals don't have the stenographers don't have that the ultrasound scanning stenographers don't have the expertise to know what type of lesion they're looking for and in my own experience stenographers have admitted I've never heard of your condition I don't know what type of lesion I'm looking for and I ended up having an MRI scan by default because the ultrasound scan came back inconclusive because the stenographer admitted that she wouldn't be able to recognise what these lesions would look like so then Gartnaval pushed me off to another hospital to have an MRI scan and that's the only reason I got one because the fear was there that there was something wrong I don't trust ultrasound scans because I know there's they don't work for us you know you would get a scan once every six months and go home and still be very anxious I wouldn't trust it I don't trust the results and I worry that that the operator is not competent and speaking to the Scottish patients that I speak to everybody feels exactly the same so mental health wise and anxiety wise these ultrasound scans aren't doing anybody any they're not beneficial to us at all thank you very much your petition calls for enhanced MRI scans and attempt to detect early metastatic disease you say that these scans are vital and would allow you to let life prolonging treatments and to plan the future you're also verified that these scans have been provided in England and without too much detail do you know of any information on the success of these scans south of the border yes I know that well I mean I don't think in respect of how this pans out with the medical community I don't think there's any dispute that the enhanced MRI is able to spot the disease the the contrast agent they use allows you to spot active areas and just gives a better picture and you use what's also called diffusion waiting as well this will provide the best possible picture and I don't think there's any dispute that they allow you to see the disease earlier but when people are pushed or anyone who doesn't support it they often say well it doesn't make any difference because you're going to die anyway and I've personally come across people saying that several times so irrespective of whether you spot it now or a little further down the line six months a year down the line on it when it's big enough to be said an ultrasound you're going to die anyway but the evidence is there now to demonstrate that there are at this point life-saving treatments that treat the whole liver as I mentioned before most people can't have this cancer cut out because it's just peppered all over the place so whatever size you get it it doesn't make any difference however there are now treatments available one is called chemo saturation chemo sat where the liver is isolated and 100 times the usual systemic dose of chemo agent that might be given for another disease 100 times that dose is given just to the liver for half an hour and the blood flow is controlled and then it's filtered out that's removed from the bloodstream to the filtering mechanism and the patient it then goes home after a day in ICU and there are very many patients around who've had this treatment called Delcath chemo Delcath the name of the company that offer it and who are now surviving three or four years later with very good quality of life they might have repeated treatments and this is now calling into question the contention that ultrasounds don't make any difference in a MRIs don't make any difference because you're going to die anyway you can save people if this detected early with this new treatment this was presented at several medical congresses last year and I think there's a big reveal coming out in a couple of months there's a new data coming out that's going to show it even in a better light because because the technique improves as they improve the filtering mechanism and so on so there are now treatments available there are other ones there's one called surtex I won't go into too much detail I've highlighted them on the indicated them on the handout but at this point we now know the early detection enables intervention that will save your life or give you several years of good high quality life where you'll be working and that's what we know from just in the UK for example and I dare say elsewhere in the world as well have got similar results it's my understanding that all scots are sent to the specialist unit in Gartnavel is that true yeah at the point of diagnosis this normally happens at local hospitals and everybody is sent to Gartnavel I know some patients who have gone for proton beam who have been pushed down to Liverpool because Liverpool carry that out Gartnavel don't but most most of the patients are treated with placredo therapy in Gartnavel on the back because it's such a rare rare condition would it be your contention then that there's not enough consultants with enough knowledge of this to be able to I don't I don't think there should be only be one specialist unit and I also get confused and quite angry at times with Gartnavel sits right beside the Beatson why the two facilities don't work together the Beatson has got the technology it runs all through the night for scottish cancer patients and I don't understand why the medical oncologists and the ocular oncologists don't work together because they're next door rather than I attended Gartnavel in January and I've now been discharged from Gartnavel because the treatment of my eye I can't fault and my comment to the ocular oncologist in January was well who now do I see for scans of my liver and the answer I got was your local hospital will send for you in a year which means that it'll be next January this is worrying to me because next January that means it's 18 months since my liver's been surveyed either by ultrasound or MRI scan and a lot at the moment I'm in limbo because I don't know what's happening and from this this cancer travels through the blood so I don't know what's happening on my liver at the moment and I won't know until January I spoke to my GP about this and she seems to be unconcerned you know all credit to my GP she doesn't understand the condition and she said she doesn't understand the condition and she follows the direction of Gartnavel but it's I just don't think that ocular melanoma patients in Scotland are offered the same support and treatments as that as other cancers just to go back to the scans again I just be interested to know if you or patients that you know have actually asked for MRI scans when they were diagnosed and were refused and if they were refused what was the explanation I myself have asked for MRI scans I know there's a gentleman in the public gallery has also asked for MRI scans of the people that I speak to most have the answer that I got and you might find this actually quite shocking I did at the time was if you come to my private clinic in Glasgow and pay me you can have an MRI scan that was my my ocular oncologist said that we don't offer MRI scans because when it travels to the liver there's nothing that can be done anyway but if you'd had a scan earlier that could have been picked up and you could have been treated before that happened. Now the answers I got when I asked I have constantly been asking Gartnavel hospital and I keep getting the answer. We don't do them. And as far as you're aware is that what other patients are being told as well? Yeah last week I know a lady who attended Gartnavel last week she's a newly diagnosed patient and she's actually made history in my eyes because she was given one and the only reason she was given one was because her liver was sat too high for the ultrasound to get a good picture off and that's the only reason otherwise she wouldn't have. Yeah well that's that's interesting thank you. Thank you Maurice Corry. Thanks Jack. You state in your petition that you have also written to pass some present health secretaries and the paper prepared for us today refers to the Scottish Government's answer to a question in the Parliament which I'll now read out and it says I quote current guidance suggests that there is currently insufficient evidence on the benefits of the use of MRI scanning on the detection and treatment of metastatic of metastatic disease in people with oculomelanoma what is your response to that? Yeah I think this is a little out of date and as Jenny just mentioned a second ago that she'd spoken to the consultant who said it doesn't matter if you're on at the level because there's nothing you can do anyway and unfortunately there is amongst the medical community some sort of lag between what has actually been quite a rapid development in treatments not just an oculomelanoma I mean that we're going through a kind of renaissance and cancer treatment you read about it all the time in this immunotherapy drugs that I'm on at the moment I mean I had a lump on my face it spread outside the liver again and within two months of that and that was in that was over two and a half years ago it just shrank to nothing and my oncologists couldn't believe it but of course all of this is only possible through early scanning so at the moment what to try and collate the evidence to indicate that there is a benefit in early scanning and thus there are effective treatments we've collated the patient stories of those who've benefited from these new treatments and we also know that the chemo so as an example though there are other treatments and there are medical published medical papers within the last year so I'm talking very recently demonstrating its efficacy in the treatment of oculomelanoma metastases and we also know that it's only effective at relatively low tumour burden once it goes beyond a certain point and some of the early trials with it they were just trying on all and sundry they're going to give it to this person of course what they notice is that if you pick it up early and you're treating it when the tumour burden is low it's much more effective so I would challenge the contention that I think that is probably true of the data that they were using when they provided that but there's more up-to-date information and there's more stuff coming as well and and we see it regularly so a lot of it's just a kind of time lag I think um sorry to come in on that no no it can explain the scientific this is very interesting um are you saying that what we've got available currently in the NHS in Gartennable is out of date um yes or no yes right I'm telling that yes and I think some of the treatments it's worth noting because there are doubtless cost implications for the new treatments and all the rest of it many of them are now available on trials so I mean I've got my next set of three monthly scans tomorrow and I'll find out more results you know fingers crossed touch word on Tuesday but if anything goes wrong I know what I'm going to do you kind of have a plan B if need be and there are trials throughout Europe for the latest of this DELCAF there's another thing called IMC GP 100 it's an American company called Immunocorp but they've been running out of Oxford and they have a trial for their new drug that's shown great promise so some of the treatments aren't actually available on the NHS in Scotland or in or in the rest of the UK via NHS England because they are quite new but they're available to patients because we're quite where we can get on these trials so people are surviving by going on drugs trials which is useful for hospitals in some respects because it comes at little costs to them or paying privately or paying privately but um DELCAF treatment privately costs £35,000 so I do know someone who's had several treatments and been surviving longer than I have with the disease and he's got a more aggressive form with seven of these that have been paid for because he's got the most incredible cover through Bupa and they've paid for these but as you you're right though I mean some people have just had to pay out of their own pockets and in the States I mean this is very different there but people you know have sold their houses to have the treatment but crucially they're still live and they're watching their kids go up and you know so the stuff at Gartnable and in other areas the treatments are out of date but the opportunity to take advantage of these trials or these treatments or to pay for it privately or to have it done wherever else is only available if you're picking up the disease early enough that's you know the bottom line thank you very much Angus MacDonald Okay thanks, thanks community morning um you've already given us an idea of the number of sufferers however just for the record um you refer to ocular melanoma as an orphaned cancer and you say that the numbers in Scotland are few. Do you have any idea of the numbers of sufferers specifically in Scotland? Um we've got numbers for up to 2014 and 2014 there were only 59 sufferers in Scotland compared to probably seven per million it's slightly higher in certain northern climates and so if you go to Scandinavia you might hit eight or nine per million so I think Scotland I don't know five or six million so you expect 40 50 new cases a year I think it was 59 and then it was 47 I'm just looking over your shoulder Jenny so but these are the kinds of numbers newly diagnosed each year and half of those are going on to get metastatic disease and at the moment they'll nearly all die unless you're very lucky or you pay for MRI scans privately get it picked up and then can have one of the new treatments but these are the kinds of numbers you know broadly speaking because obviously it varies from year to year but 40 50 something in Scotland newly diagnosed ocular melanoma each year half of whom will metastasise okay thank you. Thanks I suppose on that point I mean the idea of an orphaned disease that you don't get attention paid to because there's so few of you the other side of that is that there's so few of you there's not a massive cost implication of dealing with that problem can I maybe ask I'm quite interested in the fact that is it the case that routinely in england presenting and if you know if Jennifer presented in england the way she did would routinely she'd been offered an MRI scan well it depends which centre you go to it's certainly not universal throughout the UK but the specialist centres so if you go to London London or Liverpool or Sheffield and where I am well I'm being treated once my eye was treated I went to Birmingham's QE hospital because it's a well regarded hospital and ironically is one of the top liver sort of departments in the in the world so I thought that was an opportune place to go and I they gave me routine MRI scans Southampton University Hospital that's probably the leading hospital in the world for ocular melanoma metastases and they have specialists that they've taken a particular interest in it and done very well and they will routinely provide a screening via MRIs post primary so not every hospital again there isn't the specialist and people don't know about the disease as we discussed earlier but the specialist centres recognise what can be done and as long as you go to one of those hospitals you'll be given MRIs. I suppose anywhere in NHS it expects specialisms but it is to inform people that that specialism is there at least people can be directed towards it and learn good best practice from it. Well one of the things sorry at Occamol UK we try and funnel people into that so we leave leaflets and say this is what you should be getting so when they go to the specialist centres they can become more informed. Do you have to funnel people in there somehow that's just how we go about it? I'm not sure if a consultant level or a GP level is saying what doesn't really matter if we're doing this it's about how we ensure the sports and medical community, the clinical community in Scotland are actually aware of these specialism and drawn up but Rona you wanted last point? To pick up on that I was concerned Jennifer when you said that you know your GP didn't know anything about the condition and you know that and I'm just wondering if you know of other patients who've had that experience if you think it's there's more awareness south of the border than up here and that might be due to the scale of the number of cases but so you think it's widespread that the medical professionals don't I honestly do you think it's widespread in the action and ambition the Scottish Parliament ambition action action and ambition we read about awareness of the the big four and awareness of the different cancers that they should be pushed out I actually think for the sake of all of us for the education of GPs education of hospitals and for the general public there should be an awareness of eye health because as I went to the optician to get I had no symptoms no nothing just to get a new fronted new pair of glasses and ended up with being told I had ocular melanoma but for the grace of God go I it could be any of us I really think there should be I mean I think that's that's where opticians you know should be well praised for for picking up these things and how important it is that you get regular eye checks but it's concerning that when it gets beyond you know when it goes from them to the some of the medical profession or some GPs they don't know what but when I went to my GP I'll tell you a funny you might think it's funny tell you a funny story my GP said well you don't have um this isn't a life sentence go home and watch Breaking Bad I didn't even know what Breaking Bad was but I went home and asked what this programme was and found out what it was and wasn't too enamoured at the comment that I got but it showed me his knowledge of my condition was not there yeah I actually gave him one of ocular melanoma leaflets and pleaded with him to look up the site that this would give you a little bit of information about why I'm so worried and went back the next time and it hadn't I was at my GP two weeks ago to ask because I'm concerned about when my next liver scan will be and she said it'll be in a year they don't get how anxious that this makes all of us one might not necessarily expect the GP to be fully informed and everything but he should be receiving information so that the next level up there's also a concern that there seems to be a gap between what happens in Scotland and elsewhere do there's any last comment you want to make we will distribute the handouts that you brought with you yeah um I would just like in the you know in the chapter five of that I'm the action and ambition it it is dotted all around it about early detection and diagnosis that's what we're asking for you know eye cancer isn't in this policy okay could could we please be included in this policy for early detection and diagnosis that's what we need okay can we have any suggestions then on how we take this petition forward I think the obvious one chair is to go back to the Scottish Government with and ask for an updated view given that there seems to be much more a lot of new evidence to bring to the table that seems to be an obvious one okay and yes I agree entirely with that and also some of the cancer support charities like milling cancer cancer research or q mel to get their views on on everything that we've talked about today really when is there a case for contacting them I don't know what they could call themselves the opticians professional bodies because they quite often develop a lot of policy in this areas because it does seem it's it's identification recognition that this so how do they do that and how supports are they but there's a connection between what's happened to your eye and then what happens to your liver is a bit it now seems to be missing in what we're certainly I think you make a very compelling case for an MRI scan to be routinely offered so it would be useful to know the review as well I think um sorry maybe the GP Association of Scotland general practitioners that should be they should be included as to why this message is not coming and Jennifer's been very explicit about that the stories I get from a lot of patients tend to think that um Gartneyville concentrate on the eye and once the eye has been treated they're happy with that yeah it doesn't it doesn't move on to the medical side of things isn't it yeah yeah they're not connecting at the next level yeah yeah and it might be worse while we've been making some contact with the specialist or units that you've identified in england sign established what it is it has triggered this very this position which seems to have a different kind of understanding than than we have and it's a good place to start just because they specialise in that area and I think it's a final point as well because the MRI I'm doubtless there are cost implications and things like this but the because people are receiving ultrasound anyway they cost a couple of hundred quid and it's five or six hundred for MRI you're probably saving five six hundred pounds a year by not giving them MRIs but you're picking up such a huge proportion of metastatic patients because so many spread to the liver within five years it's it's very sad that so many do but you're gonna you can have a higher sort of hit rate of positive fines all of which you have options to do things with you know we know where to look we could point an arrow at the liver and say look here in the next five years and you'll find lots of people okay well I think there's certainly a number of very useful actions we can take can I just thank you very much for coming along I'm very conscious it's an issue that we have found compelling but it's something that you're living with and you know even just at personal level in terms of your wellbeing being anxious about what treatment you're getting must take its toll but can I just thank you very much and wish you all the very best with you as your treatment goes forward and we will come back to you with what we our findings are this will come back to the committee and once we've had responses from the various bodies we'll be considering it again we'll certainly you'll have any opportunity to comment on the responses that we've got just to thank you very much for your attendance today and can I suspend the meeting at this point if we can call meeting back to order and if we can now move to agenda item three which is new petitions but where we are not taking evidence the next position is on the agenda it's petition 1630 by Fiona Webb on nursery funding for three-year-olds the petition is calling the Scottish Parliament to urge the Scottish Government to revise their criteria for children becoming eligible for part-time funded nursery places following a child's third birthday members have a copy of the petition and a spice briefing the petition background information explains that many three-year-olds are missing out on part-time funded nursery places due to the way the current criteria have been drafted wonder if members have any comments or suggestions for action this is one that's been it's been debated quite a lot in the chambers it's quite a hot topic at the moment i think that i think that it does seem to be on the face of it again the way it's known as a bit discriminatory that's the right way to say that but it looks like a three-year-old missing out on three months or more of nursery care is quite significant i think we should really you know seek some opinion from outside for sure you know around about parenting groups i think that we can get some apolitical views on this that is well i think we have to accept that there obviously has to be criteria of of of when children can can access this but it would seem that it seems to be you know a bit of a postcode lottery a number of local authorities already starting children from their third birthday or the month after and some take a different view so that's confusing as well so maybe we need to get clarification on that but it is definitely an issue and so i think we need to we need to get views from obviously Scottish Government and from many of the the third sector children's charities and COSLA as well i think one of these chairs is that we need to ask you know why it's not running in sync with the primary school you know criteria i suppose the issue i drew out if it was if someone is entitled to two years it doesn't really matter how the provision is delivered because it's about funding the place as opposed to the place itself whether i'm missing a point to you i mean if your child turns three and they're entitled to two years should you not just get that or is it to do with how it connects when they then go to primary school that's a good point because some kids are going before they're five and i wonder sometimes and this is an entirely personal view whether parents feel that their child maybe you know they can qualify to go to primary school and there's a financial pressure on them to to do that when in fact if they were going to get funded to stay in nursery to be on five they would do that i don't know if they were entitled to their two years funding because i do think there's sometimes a pressure on families for a child to go to school very early when in fact if it wasn't a financial pressure they would see as some parents currently do is well no they're not going to go four and a half they'll wait until they're maybe slightly older going in comparison with their children yeah so yeah so look at that me rather than back to me that is true but whether it's is it a financial pressure but should it be a financial pressure then the way that the resources are managed is kind of an arbitrary decision round birthdays i'm not sure it made it more confusing the fact there's this question i mean the comparison of the european system whether what coming back is going to primary school slightly later um and whether that's in the mix at the moment and they've just stuck to the old system so you know saying we have to get this eat the views and gather them up and maybe ask some further questions because it would be interesting to find out i suppose direct experience and it may be that at a later stage in the petition we might want to bring in some people who have direct experience of isn't exactly what it is their concern is but is this just simply how does this fit in with the broader proposals by the Scottish Government much more flexible under childcare and their support for access in childcare places and it is the is the criteria pretty random and its consequence for individuals so that people are not necessarily getting their full entitlement which is i think it's what the petitioners view is um they say that um Scottish Government claims that you are entitled to a funded part-time place for your child broadly speaking from the beginning of the school term starting after the third birthday however as my husband i've found out is not entirely accurate as because of birthday cut-off points so it would be useful just to get more information on that and the views of i think i've already identified Scottish Government COSLA and then there's a range of organisations working with um i mean suggestions here working families parenting across scotland farthest network scotland one parent family scotland voice union it would be useful to maybe to look what the unions are involved in supporting childcare their experiences um i don't know there's from scotland but there are other um organisations that actually work specifically in childcare and we might want to look at them children in scotland as i said as a three-year-old a few months is a long time and the development of development i'm just i'd be interested to fit in with who would who would we'd ask for that this of issues around development and not or non-development in that sort of period of time in the reality for a lot of families is that they will their child will be in a child care place but the difference with them is it's not funded so i you know i can understand there are cut-off points that suit the organisation but if it's only about the funding it doesn't feel logical to me to have cut-off points but that might be something we'd want to explore further with the Scottish Government is there anything else that we might do there's i think just simply to recognise i think the petitioner has got an interesting petition and brought to her attention is something we'd want to look at further but wonder if there's any other suggestions of what we might do no it's quite a lot there to start with okay in that case um we can close the meeting to the public at this point going to private session