 Maeg i gychwyn i'r cwestiwn i'r committeeau cyfnodol oeddu oddi, ac wrth gwrs, nef yn ymdagedd fel pethau mewn eich cyfnodol yn ymdegwrs, a chywg ymdegwch ar gyfer y dyfodol ei ddifydigol oes a'r blynyddoedd gyda Jackson Carlaw. Yr unymydd ym gyfnodol o'u geshaskan cyfnodol ac mae'r un peth ymdegwch o bobl E1105 by Magery McAnne, ond St Margaret's of Scotland's hospice. Members will recall that this petition was deferred from our meeting in the priests to enable Gil Paterson to attend for the petitioner and to feed any comments on behalf of the hospice. Members have also received an email this morning from the petitioner and the members also have a note by the clerk and two Scottish Government letters. Can I welcome Gil Paterson to the meeting, who has a constituency interest in this petition, and may I now invite contributions from members? I'm rather concerned at the submission that was tabled this morning that was dated the second march. I understand that there was agreement with Greater Glasgow Health Board, Greater Glasgow Clyde Health Board and St Margaret's Hospice to carry out an impartial review of the funding. However, based on the submission that we have received, there is clearly actions being taken behind the scenes, which I think caused severe detriment to any honest and partial assessment being made of the funding to St Margaret's Hospice. Particularly, the comment on the top of page 2 where it's alleged that Katrina Renton from Greater Glasgow and Clyde Health Board has indicated that they should not share the information regarding funding of other hospices within the health board area. I think that that goes to the heart of the matter that this committee has been discussing for the past eight years. It is about the fairness and equity of funding for hospices in the health board area. Greater Glasgow and Clyde health board have—the only way that I can describe it—procrastinated and procrastinated in giving an honest answer to St Margaret's Hospice. If the statements that are contained in the submission that we have received today are true, I think that, as a committee, we should be writing to Greater Glasgow and Clyde health board to seek clarification as to the comments that are contained in the submission to find out whether or not it is a fair and honest assessment that has been taken regarding the funding for St Margaret's in comparison with other hospices in the Greater Glasgow and Clyde health board area. Unless we get that comparison and unless that comparison is open to review, I think that the St Margaret's Hospice will still be being dealt with unfairly and unjustly by Greater Glasgow and Clyde health board. To be in the film, I'm quite happy to support John Wilson's comments. Angus? I'm inclined to agree with John Wilson on this. Judging by the submission that we've received, it would certainly be a good idea to seek clarification from Greater Glasgow and Clyde health board, while the issue of funding is brought forward on a, hopefully, more eco basis. Thank you very much. First of all, I say thanks to the committee for deferring this in the way that you did. Both the hospice and myself are very grateful for that and commend the committee in the way that they handle those things. I think that John Wilson has highlighted one of the two main points that the hospice and the letter refers to. I actually don't think that they are insurmountable. I really don't. First of all, the sharing of information that how else could you find, how could a third party work out what the formula is if they didn't have all the information? I think that it's entirely right that a third party who is looking at this and measuring what each hospice gets from Greater Glasgow and Clyde is a must. The formula has got to be provided and the numbers have got to be provided, so that's the first thing. I think that that is an easy fix. The other one might be slightly more difficult is that the hospice or the petitioner talks about Grant Thornton and impartiality, because Grant Thornton has carried out work on behalf for both the Scottish Government and Greater Glasgow and Clyde health board. I think what we were hoping for was that we would have someone in place that had no connection to either parties. That might be a bit more difficult but, again, not insurmountable. What would draw the committee's attention to is the comments in the letter attributed to the chief executive, Sister Rita, who's work in the hospice is renowned. The hospice itself is renowned, and it's got a terrific record. Every inspection is always impeccable. You'll see in there that Sister Rita recognises that through good hard work on the part of different people that the gap had closed and last year I think the hospice appreciates the work that's been done. From my perspective, we're very, very close to a final conclusion. I don't think I'm speaking out of the term in saying that I've been told that it's just a little bit to go and this should be solved. I appreciate the point that John Wilson makes and I welcome the point. That might just bring clarity to where the main blockages are. Maybe it's faith that I've got in what's happened so far but I certainly think that there is a willingness in all parties to come to a good conclusion on this and the assistance of this committee has been really played a big part in that. I would ask the committee, apart from what John Wilson MSP has asked for, that the petition kept open for those reasons. Before we move to the decision, I wonder if you can advise Mr Paterson and Gil, if my understanding is that parties agreed to grant thought and undertaken review, is that correct? I don't think that's quite correct. I think what they agreed to was that they agreed, the parties agreed that there would be someone put in place to look at the issues, a chartered accountancy firm, that's quite correct. I don't think it was ever accepted on the part of the hospice that it would grant Thornton. If you look at the history of the relationship between Greater Glasgow Clyde and the hospice, then there's always a cautious approach taken by the hospice. I might be wrong but I think I'm fairly certain that the hospice never agreed to grant Thornton. However, they were doing what I would call due diligence to ascertain exactly who grant Thornton were. In regard to that, asking questions and finding out through not a simple straightforward yes-no-answer, it's got to be said. I have seen the correspondence that if grant Thornton, in my view, had answered in the affirmative way they did in the last email, there may not have been a problem. However, because that had to be asked several times if there had been a conflict of interest working not from the Government, but with Greater Glasgow Clyde. That's the element of, if you like, credibility that is, I think, more difficult to solve. The straight question is, I'm fairly certain that the hospice never agreed to grant Thornton. I'm quite clear in my mind that I would quite clearly want to continue this. However, I'm a little puzzled in terms of what the remit of the committee is, in terms of certain instructions. If you're looking for a third party to come in to resolve an issue, who's going to instruct that third party, who's going to pick up the cost for that third party to do that, and how long will it take? I mean, those are the questions that I would like someone to answer for me. I think that I believe that the committee has a right to make that. I have a question that we made that we can write to Glasgow Health Board for that information, following on from this latest petition. I think that the other question that I would like to ask would be along the lines of, if we could find out if the hospice did, you know, raise in writing, or are there concerns with Grant Thornton being part of the review committee? I think that we can provide that information, and I could answer the other question that Mr Malik raised. The money has been set aside for the third party to conduct this work, so that there's no question that it's not going to be paid for, and it's already allocated. It's helpful, however. I would still like to see an end date on this. This seems to be going on for a rather long time, and I think that it's unhealthy to allow this to fester for such a long time, because it will affect people's employment and, of course, service delivery, so I'm keen for this to come to an early conclusion. Is there something that we can do to help to speed up that process? Thank you, convener. Given that I've sat in the committee for the old, during the period that we've considered this petition, I think that from the last session in the committee we're clear in terms of looking for an early resolution. The difficulty has, and I made the comment earlier, that Greater Glasgow and Clyde health boards seem to have procrastinated at first when it was about Blawerhill provision that the Greater Glasgow and Clyde health board was talking about, then it came down to it. If we look at the material that we have in front of us today for consideration, with two letters from two different cabinet secretaries, almost a year to the day sent one in the 17th of February 2015, and prior to that, one in the 19th of February 2014, both from cabinet secretaries who said that they were moving forward with the investigation and the review of the funding, the difficult way is to add on to the question that's been asked about the grant-thornton issue. If we are writing to Greater Glasgow and Clyde health board, could I suggest that we ask Greater Glasgow and Clyde health board how many companies they put forward to act as investigators on this matter and whether or not grant-thornton was the only company that was presented to St Margaret's Hospice for consideration, because it would be useful. Part of the difficulty, I think, in making the demand that we get somebody impartial to carry out the review, is that there will be very few companies out there that are completely impartial who have not worked for Greater Glasgow and Clyde health board or potentially worked for the Scottish Government. It is about trying to find out whether or not there was a list of organisations that were provided to the hospice so that they could then do, as Gil Paterson said, due diligence on what organisation they felt would be not, well, preferable to the hospice, that they felt would be a genuinely impartial review of the services that were being delivered and the funding being made available. As I said, among that, we might write to Greater Glasgow and Clyde health board and seek that clarification. To consider what action we are going to take in relation to this petition, do we agree then that we are going to write to Glasgow and Greater health board with regards to the latest email that has come in and the issues there? We have also added to that letter whether they are alone appointed Grant Thornton or whether it is the Scottish Government who may have hired Grant Thornton, I do not know. The third one is that we could write to the hospice and say if they at any given time did base concerns about Grant Thornton with either Greater Glasgow health board or indeed the Scottish Government. Draw the attention to the health board in the sense that we really want a conclusion. I do not like the idea of ping ponging. I actually want a result. I think that we have had enough ping ponging. We need to bring this to a close and I think that we should be seeking a date when we can suggest a closing date. That is important. We need to have a benchmark now. I think that we cannot just keep going on endlessly. We know that it has been on to 2007 but there have been other issues that have been raised today. I think that it is only right that we do what is requested in the committee here and we are right. Then when that information is going back, there will be recommendations on the paper there. We can then decide then as to what we do, whether we continue with the petition or whether we close the petition. What do you suggest is a fair timeframe for that to happen? I think that the normal time, if you are writing to any organisation, we expect a reply back within 20 days. If it cannot happen this once, I am no doubt that this petition could be back maybe sometime round about April on the committee. I am stressing the point that we really need to bring this to a conclusion. We need to suggest to the health board that we are now seeking for this to be drawn to an end rather than another set of correspondence. I think that in reaching that conclusion, the committee has got to be really, really aware of all the facts. If you are writing to the people who have identified here, we would expect a response back to some time. We will bring this petition back to the committee in round about April time. The next petition is PE1537 by Shona Brash on behalf of the coastal regeneration alliance on the proposed energy park at Cuckinsley. Members have a note by the clerk and the submissions. Can I welcome Ian Gray to the meeting, who has a constituent interest in this petition? Can I invite members for any contributions? Thank you very much, convener, and I appreciate the opportunity to speak briefly to this petition once again. The committee will be able to see from the submissions in front of them that, firstly, the marine energy park as a project is continuing. That is clear from a number of the submissions from stakeholders, not least Scottish Enterprise, who make clear that they are deciding on next steps based on assessment of market interest, the outcome of on-going technical feasibility work and so on. It is clear that the project continues. It is also clear from the submissions that the committee has received that the petitioners do not feel that they have received the assurances that they sought that they can accept regarding consultation in the future. Indeed, a lot of the submissions try to suggest that consultation has in the past taken place in spite of the fact that the petitioners and the petition itself made clear to the committee that the community do not accept that. It is also clear that the petitioners do not feel that there are indications that they can trust that there will be proper regard given to the community's own aspirations for the site, aspirations that are now quite well developed and presented to the committee in an earlier stage when the committee considered the petition. The truth is that the community of Cackinsey and Port Seaton around the site remains very much in the dark as to what is happening exactly the situation of which led to the campaign and support for the petition in the first place. I therefore like to suggest to the committee that they continue with this petition and further interrogate the situation. I think that the committee could help to provide some clarity for the local community, either by continuing the petition itself and perhaps seeking evidence or by referring the petition to an appropriate committee. My own preference would be for the former but, obviously, that is for members of the committee to decide. However, I would strongly request that the committee consider continuing this petition, which has not resolved itself. Angus. I am clear that the issue of energy supply has been a major news agenda for a number of days recently, not least the possible need for a large combined cycle gas turbine in Scotland somewhere. However, the major obstacle in the way of that is the transmission charging regime that discriminates against new electricity generation in Scotland. NPF3, for want of a better term, is basically a Government wish list. There are quite a number of projects on that wish list in my constituency, and some of them may or may not come to fruition. However, I take on board Ian Gray's point that the Kackenzie Energy Park does seem to be moving forward as far as Scottish power is concerned, and it is clear that the coastal regeneration alliance is not taking any chances with regard to NPF3 not moving the project forward. I think that the best way forward would be, given that the issue of energy generation is hotting up. It might be an idea to refer this to the Economy, Energy and Tourism Committee, because I am sure that it will be doing some significant work on this in the future with regard to energy supply. Thank you, convener. I am quite happy to support Angus MacDonald's recommendations, mainly because it is a remit of energy economy and tourism committee. You have a local economy, you have a tourism aspect, and you have a historic value of environmental impact down there. I think that they could do a far better job than this committee, just because it is a remit on their specialist subject. I am quite happy to hand it over. Inshaith. The fact that it is such a high significance, I would have thought that the fact that there are people still working here and we still do not have the full package, as to say, I think that it may be premature to send it on to the other committee. I would have, rather that I had got all the facts before making that decision. I am minded to perhaps continue at this early stage to see the final case for what they are trying to achieve before we actually move forward. I think that there is a lot of information still to come. There are still tests going on, and I would like to see those results first to see what is the best way forward. I am quite happy to continue it. There is a way between the two of them. It seems to me that it is a fluid situation. I think that the point that is made by Ian Gray is quite correct. There has obviously been almost a democratic deficit that appears to be a wish list from Government. It appears to me that Scottish Power and Scottish Enterprise are operating at a level that is not perhaps taking on board the clear views of the local people. Equally, I understand that it is a moving feast. I am not correct in saying it. If it is not today, it is any day now. The towers are due to be demolished. I thought that I had seen that somewhere in my constituency since it affects the vista. The towers are not the chimneys. Things are moving there. It does seem to me that the energy committee would be more appropriate. That is assuming that they are going to accept it, in which case it might be remitted back or whatever. I do not know whether there is a way of satisfying Hamzalla's concerns. It is kept alive by initially giving it to a committee that might be more appropriate, given that it is part of a wider issue. Angus is correctly commented on, but what has been correctly raised in the petition is that there is a local democratic deficit that needs to be addressed. The consensus is that we might refer that to the economy committee. My understanding is that, even though we are referring it, the petition remains open. Is that right? I am sorry, just for clarification. If we refer the petition to the Economy, Energy and Tourism Committee, it then rests with the committee to make deliberations on the petition. The only information that we get back from the committee is what action it has taken on it. If the Economy, Energy and Tourism Committee decides to close the petition, then we have no further jurisdiction over that petition. Initially, we keep it open to see what other new information comes here before we decide to send it forward. I do not think that the time is right for it to be sent on at the moment that it stands. Local concerns need to be addressed and let us allow that to happen. I do not think that it is going to do any harm by skipping it open at this stage. I appreciate a consensus among the committee that the petition should not be closed, that it should be continued and that is welcome. I did say it is for the committee to decide how they deal with this, but I also said that my preference would be for the committee to take evidence. Perhaps it is worth explaining my reason for that. The thrust of this committee is about the reluctance of the local community to have, as they would feel foisted upon them, an industrial development of the scale. It is indeed more about what happens to the site and to their community than the potential importance for Scotland's energy strategy of an energy park at this or another site. It seems to me to be some merit in continuing to explore the nature of consultation and how things have been taken forward before it is further referred, but I say again that I defer to the committee that that is their decision. What action would you like to take then, colleagues? Given the comments of the local member, clearly, if there are members here who are concerned about referring it directly or immediately to the EET committee, I would be content to seek further information from Scottish Enterprise and the Australian Council, for example, to request that the public consultations on the development be extended. However, that would be with the proviso that, ultimately, it would be referred to the Economy, Energy and Tourism Committee for further investigation. Formal soundings with the committee, because it does appear to me, notwithstanding the legitimate comments that Ian Gray makes, that they would be more appropriate to do, because it is likely not just to be site-specific, it is likely to be more general, but it will affect this. It is how do we balance a lot of what is a current government wish list, not simply on this site but perhaps on Angus's or elsewhere. They would be the more effective committee than we would. Equally, I can understand the points made by John Wilson that there is no point in us remitting it there if they then say, we are too busy, we do nothing. The worst scenario for Ian Gray's constituents is that nothing then happens, because we have rid of it and they have not accepted it. So some activities of seeking further information, as Angus says, making some discrete inquiries about the energy committee, because I tend to think along with Angus that the likelihood is that they will be looking at energy in the round and they could do this as a factor of it that would be more appropriate than a stand-alone investigation by us and that keeping it going for a few weeks, pending both a letter to the Scottish Enterprise and indeed some informal discussions. John Wilson. I agree with Kenny MacAskill that we should keep the petition open, we should write to Lothian, we should write to Scottish Enterprise to find out what is happening with us, because as Angus MacDonald said, the NPF-3, like NPF-2 and NPF-1, was a wish list that was developed by the Scottish Government. There is no actual funding allocated by the Scottish Government in terms of those proposals, and it is down to local circumstances and arrangements whether or not those proposals go ahead, but it would be useful just to write to Scottish Enterprise and East Lothian Council to find out where exactly they are in the process, because if you look at the Scottish power response that we received, while the Scottish power is the main operator of Cokkensie, they have indicated in their submission that they are not engaged in any negotiations or discussions about taking forward the power plant in any shape or form or being involved in the energy park, so it would be useful just to get clarification from Scottish Enterprise, East Lothian Council, but in getting that clarification, I think that we need to ask for clear outline of what consultation proposals they intend to undertake with the local community in relation to taking forward any proposals for that site, and the guarantees that are built into that that the community has the right, as they always have, to object to any proposals that come forward. Hopefully, if we get the community empowerment legislation through the side of this year, then they might have greater powers under the community empowerment legislation to challenge any proposals that go forward and come up as they presented to us in the last year with their own proposals for that site. I would suggest that we write to those two agencies, and as Kenny MacAskill said, if the clerks could have an informal word with the committee class for the economy and energy tourism committee and find out whether or not they have the time within their forward calendar to devote what we would consider a considerable consideration of that petition. I would then agree that colleagues will write to the Scottish Enterprise and East Lothian Council to request that the public consultation and proposed development be extended and to take into account the points that have been raised by the committee members. The next item of petition is consideration of three new petitions. The committee agreed to hear from Petition and Evolff's Read. The first petition is PE1545 by Anne Maxwell on behalf of the Muir Maxwell Trust on residential care provision for the severely learning disabled. The members have a note by the clerk and a spice briefing on the petition. May I welcome Anne Maxwell to the meeting and ask her to speak to her petition and to set out in the context what you are looking for, and then we will move to questions. Thank you very much. Thank you gentlemen for this opportunity to speak to you this morning. Please for a moment walk with me in my shoes. I am the mother of Muir, who has a severe form of epilepsy called Dravy syndrome. Muir had his first seizure when he was four months old and we rushed in him into a hospital, not knowing that the legacy of seizures that would follow would leave him profoundly brain damaged and would dramatically alter not just the course of his life but the course of the life of his family forever. My husband and I are now Muir's legal guardians. For over 18 years we've been his voice. Muir cannot read, he cannot write, he can barely colour in between the lines, he will never work or marry or have children of his own. He requires care 24-7, including all aspects of personal care, but he is a speaking child and he has an amazing personality and sense of humour. His behaviours at time are challenging but there is still much to celebrate. Muir has been a pupil at Donaldson's College since he was five years old. At his most charant challenging around the age of 12 we fought for him to become resident at Donaldson's Lodge. Since that day Muir has positively thrived with lots of friends and a very fulfilled life but what the future holds for Muir now that he is 18 is extremely uncertain. I'm also co-founder along with my husband of the Muir Maxwell Trust, a charity established 12 years ago in Muir's name to support children like Muir throughout the UK and also their families who are struggling to cope. Epilepsy in all its forms is just one condition but the Scottish Government's own policy review identifies that 66 per cent of people with profound and multiple learning disabilities have epilepsy and so the Muir Maxwell Trust without doubt represents the most needy group amongst the learning disabled. What is glaringly obvious in our research is that the Scottish Government by its own admission lacks factual data on people with learning disabilities, especially those who are profound and may require residential care as an option because remember they have no voice. The Government relies on data provided by local authorities and social work that often comes through charities like SCLD and I know first hand that both are failing to properly assess the needs of this group because of their lack of understanding of the profound disabilities and their lack of proper application of the assessment process. Senior members of my own council have admitted to these failings. Their needs are therefore not being recognised, they are not being understood and they are not being met, including the desperate need for sophisticated long-term residential care and by that I do not mean long-stay hospitals as in the past. Nobody wants those. I have fought a relentless battle for our own son to receive the very best of care, including residential care and it has worked for him. It would work for many others too but sadly they have not won their battles as I have and their children have been denied the same care. This all comes to an end shortly for Muir because at great cost to his local authority he will be an out-of-area, in fact, out-of-country placement. There is nothing appropriate by way of sophisticated residential care in Scotland for young people like Muir and this must be urgently addressed. Recommendations 51 and 52 of Scottish Government's review of services, the keys to life, suggests that changes here are in progress but we fear this review will fail to recognise and importantly find the substantial funding that is required to meet these needs in particular residential care and the homecoming of our learning disabled in out-of-country placements planned by Scottish Government for June 2018 will amount to no more than a sorry please adapt to fit what we have to offer because we cannot meet what will then become an unmet need. The Mansell report says early intervention and sophisticated long-term arrangements for management, treatment and support will prevent problems arising in the first place. In the absence of long-term arrangements such as residential care, the cost to government will therefore be high as the needs fail to be met and so families fall apart. Only proper assessment of need will lead to recognition and understanding of this most severe and complex group, which will then lead to service delivery in the essential form of sophisticated long-term residential care that does not yet exist in Scotland other than in much underused and remote areas of child services like Donaldson's College. I would urge Scottish Government to support schools such as Donaldson's with significant public sector investment and encourage local authority placements for children and young people at both the school and in residence and then go one step further and replicate the service in adult services in partnership with organisations like Donaldson's which are already delivering. They in turn will be the feeder for this long-term residential care with respite for those families who desperately need it. Thank you, Ann. Are there any questions from any members? Come here. Thank you very much indeed, Mrs Maxwell. That was quite a powerful presentation and outline in the case for your petition. You made reference to your local authority. Could you expand on what support you have had or what support you haven't had from your local authority in terms of dealing with your son's condition? That dates back a number of years, probably more than a decade in fact, so initially no support from social services, then after that poor support from social services. We had engagement from educational psychology, which has always been good, I have to say, but in the process of pursuing support for my son Muir, I sought assessment for him under something called a section 23 assessment of the Children's Scotland Act 1995. It took me 18 months to have that assessment carried out. It really was passed from pillar to post and in the end it was a student working for Epilepsy Scotland, the charity that I asked to help me with that report. It was then passed from pillar to post within the council. It was interesting to note that it was the same person that was chairing a number of committees that was passing it from pillar to post. Eventually, through 18 months of fighting, we got the support that we needed to have a placement within Donaldson's College, a residential placement. The social worker was then required under statutory obligations to review Muir regularly. She wasn't doing this, and I had deep concerns knowing that the future would require an on-going fight that if there was nothing on record to support his needs or to evidence his needs, then that fight would become harder. We made an approach to the council to ask them to find us another social worker. They did that. We are told that we now have the best social worker within children's disability services that they have. The meetings that are looked after review meetings have been poor, the quality of those meetings have been poor, the administration has been poor, and very often nobody is given the notice that they need to prepare for those meetings, to submit reports for those meetings. The paperwork often just doesn't arrive on time. Those meetings are poor. From a very basic level of administration, never mind actually really then taking the time to understand the very complex and profound needs of my son. That warranted meetings at a very senior level within the council where they literally held their hands up and said that I was right in all my issues and that I needed their help to correct them. There is a fundamental problem within social services in terms of understanding of the complex needs of children with disabilities. I have a couple of other questions arising from me, but in terms of your opening comments, you made reference to 2018, and the phrase that you used was, out of country care. Would you care to expand on that? We have spent considerable time looking around the country, looking around our local area and Scotland for long-term care for our son, Muir, once he reaches the age of 19. He won't be leaving school until he's 19. We've investigated everything with social services and the conclusion has been that there is nothing that can support his needs in Scotland, so we are looking at, and in fact he's likely to get a placement at Young Epilepsy, which is in Surrey in Lingfield in England. That would mean not rooting the family and I'm assuming... No, because I have two other children, so it's really not appropriate to do that. What it does is it puts enormous distance between ourselves and him. The facility is fantastic. The facility is exactly what he needs, but he has been at Donaldson since he's five years old with the same peer group throughout and consistency of care, the same carers. For him, who is very fragile emotionally, and he's just an example of many, this is a very devastating change. It's only for three to five years. After that, we have to find somewhere else. You indicated that you've been fortunate because clearly, given that you're evidence here today, you have fought hard to get the services that you've received and despite that, you've had to continue to fight to make sure that the services were being delivered in a consistent manner. The examples that you gave were the assessments and reviews by social work staff, now being told that you've got the best social worker on the case. How would you want this petition widened out to ensure that parents of other children who have the same conditions are supported? You've, hopefully, resolved all the issues within the local authority area, but I'm sure that, as you've indicated, there are parents throughout Scotland who may be facing, if not the same, but similar problems trying to get the social work department and the local authorities to set up and take notice of their children's conditions. Without wanting to sound arrogant, I am unique in as much as I have fought this battle hard and furiously for my son. I have also anticipated the future throughout this journey, which has enabled me to consider what might be required ahead. A lot of parents don't do that. A lot of parents are living day to day and they're still living with the hope that somewhere in the course of this journey, they'll be a cure. Therefore, for a lot of parents, the forward thinking is not there. To some extent, I regard myself in a way as their voice. There are parents who are on a daily basis fighting in the same way as I have with their social worker and their social work department, and with the support of schools that they would like their children to attend, the schools will attend meetings and give them support too. At the end of the day, even with the support of a social worker, you still have to convince the local authority behind that social worker to fund the request. There are times when it's difficult to know if the social worker is representing the local authority or representing the child and the family, and that's a black hole that often results in a negative decision. First of all, there is a cultural change that is required there, so that social workers very clearly recognise that they are responsible, first of all, for the family. It's about identifying needs. Meeting those needs has an associated cost, but that is not the concern of the social worker. That might be the concern of the local authority, but there needs to be a very definite loyalty on behalf of social workers to the families. Additionally, I think that we've got to broaden our horizons. The local authorities have to be much, much more supportive of schools like Donaldson's, like the Blind School. There are not many of them. There are very few facilities that are operating at the high end that I'm talking about, in particular where residential care is concerned. Fundamentally, those schools are not being supported by local authorities in terms of honouring the funding packages, and that's the best way in which, if we could get that support, we could then support the families. Thank you very much. Ms Ewing-Mackerel, you said that you had a concern about the lack of data that was held with the Scottish Government. Some of the data that we have seen would appear that the demand for residential care is on the decrease, and that is because of independent living. On the lack of data, could you expand a wee bit on your concern? First of all, we have to be clear that there is no clear definition of residential care when we talk about it. It's a phrase that's used a lot. It conjures up images of the long-stay hospitals of the past that nobody wants. It conjures up images of care homes that we have a number of in the community, but what we don't have, certainly in adult services, is the residential care that is similar to that supporting a school. The example that I use is Donaldson's and the residential lodge attached to that school. That is unique residential care. The decline in interest in residential care is inevitable because there were historically so many people in long-stay hospitals that had to come to an end, and I fully support that strategy, which was recommended in the year 2000. There is no doubt that a lot of those patients, or those people with learning disabilities, have been and will continue to be supported well in the community. I am talking about a very small number of profoundly learning disabled who are actually not capable of living independently within the community, whose needs are actually greater than that of a traditional care home can support, whose needs are actually so profound that they need 24-7 care and they need to be engaged fully to enable all the problems that otherwise might arise in their care because they become unmanagable, perhaps behaviourally, health-wise or otherwise. The statistics are wrong because they are obtained from local authorities and from social services. I know firsthand, because of the way in which they have gathered our information, that the information that they are feeding back to Scottish Government via charities and so on is incorrect, because they do not understand the disabilities themselves. My local authority, after my meeting with them, said that we need someone like you to come in and speak with social workers and educate them about those profound disabilities and how difficult they are to manage in order to help them to identify them. From the ground up, the data is not coming to you. The people who know the children best are the families and the information process, the assessment process at the front line, just isn't happening to enable you to have the proper information. Do you then think that, in your answer to John Mawson earlier, you said that sometimes when you are dealing with social workers, it is more fighting them? Do you think that it is probably a lack of understanding of social workers and being involved? A lack of understanding on behalf of social workers? I think that social workers are failing to identify this small group of profoundly learning disabled children as distinct from those who are learning disabled. It is a small minority, but they are severe and complex. Social workers in the main are not understanding the needs. With that lack of understanding, they do not recognise the need to apply the assessment process rigorously in order to have a grasp of the needs. Have you ever been in touch with any other organisation with regards to your petition? I am thinking especially here about the Scottish consortium for learning difficulties. I have campaigned on various things on behalf of the mere Maxwell trust for some time. I know that SCLD also campaign similarly, but they do not campaign for the same group of children. The same group of people. We represent a very small group of people who are profoundly learning disabled. SCLD tends to represent the majority of disabled people as distinct from the small group who are profoundly learning disabled. I have always felt that, if we were to become part of that coalition, there is a risk that our voice will be diminished on behalf of those who are profoundly learning disabled. I am aware of what they are doing. I think that they are aware of what I am doing, but we do not campaign together. Can I invite the committee to consider what action it wishes to take in relation to this petition? I think that we should be writing to the Scottish Government asking for their position. I think that there is clearly a gap. I know from a constituency issue that I have had myself not the same disability that Mrs Maxwell's son is suffering from, but there is a lack of facilities for young adults who leave care provision that is available for children. It is tragically on occasion that people are dealt with in mental health facilities for adults when they are clearly not suffering from a mental health impediment. The right thing, to some extent, is done for or the wrong thing rather is done for the right reasons. They should not be in mental health institutions in the city of Edinburgh, but I can understand the pressures on a council when caring the community is a quarter of a million. Something has to be done. I can understand that there are restrictions and limitations and a smaller jurisdiction. Many of those institutions have even noticed it in specialist criminal justice matters. Sometimes we have to go south because we do not have perhaps the number. I am not necessarily convinced that we have not got a need and that we do not have the number. Therefore, the Scottish Government is the organisation to have some general overview because it seems to me whether it is Mew or Maxwell or whether it is my own constituent, young people leaving care facilities for as children come into the big wide world and are not provided for. Perhaps I also suggest that inviting to the Scottish Government could be perhaps because it is a new petition right to learning disability Scotland, Scottish consortium for learning disability in Scotland Exiles seeking their views on this petition. When we are writing to the Scottish Government, could I ask the Scottish Government if it does collect the data regarding the number of young adults or adults who have profound learning needs and would benefit from residential care? I am concerned, as Mrs Maxwell outlined, that the only residential care that may be available for Mew or Maxwell is in Surrey. I would like to get some understanding from the Scottish Government whether or not they have made the assessment and whether there should be some provision in Scotland that allows parents that option because by breaking up the family, by moving someone to Surrey, that breaks up the family link. It might be that if we can get accurate figures from the local authorities and health boards as to the number of young adults and adults with profound learning needs, that there could be a case for some service to be delivered in Scotland that is similar to the Donaldson's lodge or the Donaldson's school for those individuals so that they can keep that family link rather than lose complete relationship with the families and potentially the wider family because some of those young adults and adults have not only close family but also Mrs Maxwell indicated that they have peer group support as well. I think that it is frightening to think that we could completely separate them and divorce them from those links that have been created throughout their lives. I know that we have an extensive list of people that we are proposing to write to but one of Mrs Maxwell's comments also related to social workers and I wondered whether we could write to Alan Bayer, the chief social work adviser because it does seem to me some of this may be about training and level of understanding for undoubtedly hard pressed social workers but I do know that epilepsy is a very specialist thing and I remember having to go through the same within the police in terms of perceptions of epilepsy are usually about somebody having a fit in a room not realising it manifests itself in a variety of ways so some level of understanding from the chief social work adviser is to what he expects and whether he thinks there needs to be any improvement within training might be helpful. Does the committee then agree to the action points raised? Thank you, Mr Maxwell, for your attendance, much appreciated. I'll now just spend for a couple of minutes. The next petition is PE1536 by Akri Jones on definition of adultery. Members have a note by the clerk and a spice briefing. The petition and the submission from the Free Church of Scotland may I welcome the petitioner, Akri Jones, to the meeting and I will now invite you, Ms Jones, to speak to your petition for around five minutes and then we'll move to questions. First up, thank you very much for giving me this opportunity to actually speak about my petition. What I am seeking through submitting this petition is for the definition of adultery to be amended so that it is applied also to spouses who have been unfaithful by the involvement of same-sex extramarital relationships. My intention of this petition is not to see the adultery laws abolished. I'm a Christian myself and I'm proud to call myself a Christian and I recognise the importance of safeguarding the adultery laws for people like myself that follow a faith and for non-religious people that value the principle of faithfulness in a marriage and see adultery as wrong. As the definition of adultery stands under current law, it's discriminatory as one section of society is being treated differently than another, it makes the law unequal and the current marriage bill should reflect marriage equally. Using unreasonable behaviour as an alternative under the current legislation as it suggests does not quite address the issue which is marriage equality should mean equality in all respects, there should be no violation of this fundamental principle. Furthermore, unreasonable behaviour can be defined very widely, it does not only apply to infidelity, it has been used as common grounds for divorce in the UK divorce law for incidents that covers anti-social behaviour, domestic violence, substance misuse etc. The right to equality is a basic human right that the government has a duty to protect, respect and fulfil that is enshrined in law and respected in practice in all aspects. As a definition currently stands, it is a direct breach of the following legislations, article one universal declaration on human rights that states all human beings are born free and equal in dignity and rights. Particle seven to the convention for the protection of human rights and fundamental freedoms article five that promotes equality between spouses to enjoy quality of rights during marriage and in the event of its dissolution. The Human Rights Act 1998 places a duty on safeguarding existing human rights and a duty on government, the courts and other public bodies to respect human rights. Under the Equality Act of 2010 it is in breach of article 13.1 which is a direct discrimination as it treats one person less favourably. Article 27.5 it is a form of victimisation as it is committing a breach of an equality clause or rule and article 19 it's an indirect discrimination as it places one person at an disadvantage. As stated my intention is not to see the adultery laws abolish in a world where morals is on the decline, we live in a world that has become a better place, more social problems, more divided, more hostile. We are living in a world that needs to safeguard our morals more than ever. Marriage is one of the most important institutions in our society. Faithfulness is an essential part of marriage and the adultery laws upholds this belief. The law our morals social and spiritual behaves is steeped in biblical principles. Don't steal, do not commit adultery, love one another to be a good Samaritan, do not commit adultery etc. Adultery is not just a personal offence against the injured spouse it is an offence against morality laws that has enormous consequences for the rest of society. It is a clear violation of the contract or obligation between a married couple. In the UK we treat adultery as a civil and personal matter but we seem to forget that in many parts of the world like Saudi Arabia, the Philippines, North Korea, Taiwan, Pakistan and currently in 26 states in the USA adultery remains an offence against the law and is punishable by fines and imprisonment. This parliament needs to leave a legacy to future generations of a powerful moral compass that informs us what is acceptable and what is not and a set of values that treats everyone equally and treats everyone equally, recognises and protects human basic rights. We need to leave this world in a better place than what we founded in. Moral fibres binds the nation together, removing the adultery laws will affect the moral fibres of our society, contributing to the decline of morals, create more social problems and it will leave a legacy to future generations that unfaithfulness is acceptable, it will devalue the importance of faithfulness within a marriage, it will send out a message that adultery does not matter and does not cause harm to the injured party. This may lead to an increase in divorce rates placing further pressure on existing services and divorce law will eventually slide more towards a fully no fault system. Parliament cannot remove adultery laws without finding itself in breach. Under the Equality Act 2010, religion, its characteristics, beliefs and beliefs are protected for people who follow our faith. Removing the adultery laws will breach this law and is a form of discrimination against those who follow the fundamental principle that marriage is based on exclusive sexual fidelity and where unfaithfulness has been cited, religion decrees that grounds of adultery need to be used to petition for divorce regardless of gender status. A sexual relationship whether it be heterosexual or homosexual is an equivalent betrayal to the injured spouse, causes deep distress to the betrayed partner and as has been seen rips the fabric of society as it tears marriages and families apart. It is important for an individual to be able to dissolve a marriage in such a manner that does not compromise both their faith and integrity. People have a right to marry how they choose so they should also have a choice on how to divorce. This parliament has it within its scope to change the definition of adultery without removing the adultery laws. In the UK adultery is defined as voluntary sexual intercourse with a member of the opposite sex who is not the person's spouse. In the USA adultery is defined as voluntary sexual relations between an individual who is married and someone who is not the individual spouse. The bible defines adultery as consensual sexual union. As can be seen there are many terminologies available to this parliament to redefine the definition of adultery. In closing Scotland is a wealthy nation of culture, history, natural beauty, creativity, forward thinkers, leaders in academia, science, research, politics, has produced prime ministers over history etc. Let us not become a nation that is poor when it comes to morals. Removing the adultery laws will divide a nation on morals. Mark 3 verse 24 in the bible says it well and if a kingdom be divided against itself that kingdom cannot stand. Thank you miss Jones. Questions? Miss Jones you actually gave throughout your opening statement there. In several occasions you made reference to the current legislation on adultery not being removed. Your petition in itself is fairly straightforward. It is basically one sentence and saying basically you want the adultery legislation to apply to all forms of marriage. If you are so concerned in your opening remarks by pushing forward this petition, do you fear that there could be a change in the legislation to take adultery out of the legislative framework? I am very concerned about it because I have been reading it in the papers since last October where my petition actually has been referred to. It has been stated that there has been concerns that if this petition goes through that the adultery laws will actually be abolished. That is not the actual intention of my petition. The intention is to change the definition. I just need to highlight also the importance of the consequences that may occur if the adultery laws were actually removed. The Parliament has the option to redefine the definition of a doctor without removing its laws. As I said, it is just a prayer that concern was coming from. If you were so concerned that the current adultery legislation would be dropped in light of this petition, then it is one of the unintended consequences of your petition may be some consideration by the Scottish Government or other agencies to say that this is a time to review the adultery legislation as it currently stands and to either widen the definition or, as I said, to think that the adultery legislation is antiquated and therefore is no longer fit for the 21st century. The other reason why I raised that concern is that I also read the briefing provided by the SPICE, the information centre and the recommendation about abolishing the adultery laws. That is the other reason why I felt that it was important to me to highlight that, so that there is no confusion of what I am trying to achieve through my petition. Thank you very much indeed. Any other questions? I will ask the committee members what action they are prepared to take on this petition. Kenny? I think that we should just simply close the petition. I think that the minister has made her point. I have to say that I do not necessarily agree with it. I do tend to agree with the position that, frankly, adultery has passed its time and divorce should be on the basis of our achievable breakdown. However, it seems to me that we are clearly at a position where the Government has no plans. We have had the programme for government, we are in spring 2015, so the Government is not going to be legislating on this or anything between now and the end of a parliamentary term in 2016. It would be for an incoming administration, whoever that may be, to decide their priorities. Ultimately, I think that a lot of this is more for the Scottish Law Commission, and I certainly know informally that they do not have any plans given the recent discussions. It seems to me that we have had recent discussions. The Government has no plans, so there is nothing on the legislative timetail. The timescales are against us, and really it will be for future administrations after 2016 to consider, or, indeed, the Law Commission, if at some stage we decide to do a review through them, perhaps on the law of divorce or more likely wider family law. Members agree the action point raised by Mr MacAskill? Although I agree with what Kenny MacAskill is saying, I think that the petitioner needs to know that they have the right to come back after a year as well. Although we may close it today, it does not stop you from bringing it back. Okay, then. I agree the action point, then. Can I thank you, Mr Jones, for attending? Thank you. I will now suspend for a couple of minutes. The third petition today is PE152 by Peter Campbell on the choice of treatment for cancer patients. Members have a note by the clerk in a spice briefing on the petition, and I welcome Peter Campbell and Peter Adams to the meeting. I invite Mr Campbell to speak to his petition for around five minutes, after which we will move to questions. I understand that both he wants to share in the presentation. Over to you, Mr Campbell. First, I would like to say that I am a deaf person, a ward pensioner, a member of the 51st Highland Division, and I have sustained that injury, while in her guiles. I would like you to speak up, shout at me so that I can hear. I will be grateful for that. I am always getting shouted at. Sad that major says that, I know. Anyway, I am Peter Campbell, and I have come forward to watch my family die in front of me. I should never witness what I witnessed, especially through my daughter, Barbara. I will read a short statement here. Barbara worked in the hospice for eight years, so she knew all about cancer. I will never forget that day that she came in with my daughter-in-law and sat down with something coming. I said, what is wrong with you, Barbara? She said, Dad, look, I've got a wee lump in my breast. I said, well, you're a nurse, Barbara, and you'll deal with that. I said, you weren't in the hospice, and you know what cancer's all about, darling, don't you? Anyway, she took off, and that was 2006. I was to witness by 2010 that my daughter actually been butchered. That's only what I'm going to use. She had one breast taken off, and then the next breast came off, and at the time it came in 2010, I just stomach it, and I just said, God, I'm a ward pinch. I've not seen so much cruelty in all my life to my daughter and legal times here, and it's when I saw health service that they're doing it. I just couldn't take it all in. I just knew it wasn't right. Time went on, and Barbara succumbed to death. That's my statement, and when I think about it now, I just feel so angry. It was legal murder, mass murder, in my eyes anyway. It was legal mass murder, what was happening, because Barbara and I, we surfed the net, and we found all sorts of communication people who are helping to cure cancer through other means. For example, electric medicine, which I brought an example with me today, £4,000 cost, a machine called Photogenie, which I am on every day, and my wife get Alzheimer's, and she's on it every night, and she's responding to a dementia on this electric medicine. This, another good thing that's all coming to me, as I say again, I've got to refer to myself. I'm a reborn Christian. I was cured by cancer in Mid-Jagoria in 2004. In 1994, I was cured by cancer. Since the introduction of the Cancer Act in 1939, we believe that cancer sufferers have been failed by the British medical system, which only offers the three pronged treatments of chemotherapy, radiation and surgery. I believe that it was Albert Einstein who said that the definition of madness is doing the same thing over and over again and expecting different results. I suggest that this madness is evidence in our cancer treatments. In fact, a recent report, which just came out, said that breast cancer patients who rejected all conventional treatments are four times longer survival rates than those who follow the system. Cancer statistics show that in the UK, especially Scotland, we have among the lowest survival rates within the EU. One of the countries far above us is Germany, where the system allows cancer patients to use other forms of treatment if the first round of conventional treatment doesn't work. Here, if the parent asks about or does suggest other treatments, I know that some of them are actually belittled in some cases and are threatened with ostracisation and not getting any further treatment. If we look outside Europe, there is a beacon of light in Dr Contreras, Oasis of Hope in Mexico. The success rate there is on average double the survival rate at the five-year point of our cancer units, yet the majority of those attending the clinic we are presenting at stage four cancer have already gone through conventional treatment and haven't been said we can do nothing further for you. The question is how come his patients have a much better survival rate than ours do here in Scotland? Would it not be a good idea to have a look and find out why? There are large number of treatments used in various parts of the world which are successfully treating patients such as the protocol which Peter has mentioned. There is intravenous vitamin C, leotril, SCAC, ozone therapy, immunotherapy and MFU. Because these are using products which cannot be patented, there is no incentive for the pharmaceutical industry to produce them or for anyone to actually spend money testing them against the so-called gold standard. Therefore, they will never be accepted or even trialled because there are restrictions of our health system in the 1939 Cancer Act. With our devolved health system here in Scotland, we have the opportunity to look outside the conventional cancer treatment box and encourage treatment already in use in other parts of the world for the benefits of our citizens. This would not only result in better outcomes for the patient but lessen the cost to the health's budget, and we all know how we are struggling with ever-increasing numbers and costs. There is a whole world of information out there. Please be open-minded and find out more about what is working across the world instead of paying for the ever-increasing and exorbitantly expensive magic bullets, promised by some research labs and pharmaceutical companies. If we do not take steps to incorporate successful treatments already available to others, we will continue having to fund the ever-increasing costs of cancer treatments that we all know this country cannot afford. Questions from members? With regard to Mr Adams' information that he provided the committee with, did you, at any given time, pass that information on to the Scottish Government or to the Scottish tax force? I have passed the information on at previous times. The first time was to Nicholas Sturgeon when she was the health minister at a conference up in Stirling. Also, there have been a couple of other times there when I have again passed on similar information. Also, I was for a number of years part of the pilot project with the health board across in Fife. I was one of the elected health board members. Again, I have raised that a couple of times within their system. In fact, at one of the times on our board information system, we had the cancer people in there and we were allowed to sort of question and answer them. Again, when I did ask questions, I was given the same treatment as I mentioned in there. They looked down their nose as an attempt to belittle you because this is not within the standardised treatment. I would like to come in here and say I approached Nicholas Sturgeon when my daughter was alive, telling Nicholas Sturgeon my daughter had been more or less through a terrible time. I have got Nicholas Sturgeon in here, but I got to the secretary and I gave him all the information. That was two years after my daughter was diagnosed. I was shouting wolf to everybody in Scotland, wolf to everybody in Scotland about what was happening, but it was in one ear out there. Kenny Cymru. Is cancer charities taking on this, such as Cancer Research UK, Macmillan and Breast Cancer Research? Cancer charity that I am involved in is cancer active. They are now one of the best holistic cancer charities out there. I have brought a copy of their icon, their integrated cancer oncology news along, which I would like to leave a copy for the records here so that people can have a look through it. In my opinion, Cancer Research UK is part of the problem because they are too tied in with the pharmaceutical companies and they are in a lot of ways subsidising the shareholders by putting a lot of money in there for research that the pharmaceutical companies should be doing. The pharmaceutical companies think that they can walk in water but it is time they were confronted. That is what it is all about. It is all about money. We are here to talk about alternative treatments, Mr Campbell. I know that he is here to put the sparridge on some of these other companies, so he will just probably keep to your line. Any other questions for the members? Angus? You have made reference to what you say is working abroad. What research have you actually done? Is there any research that you can point us towards? I haven't got the actual bit there but there is lots of research. A, everything that's in here in the icon news, there is a section on there what is current, both conventional and non-conventional around the world and that's got references to the various research. There is other, again, I'm not one of these people who keeps things in my head about which research but there is a lot of evidence out there and I'm quite happy to pass that on forward to the committee so that they can dig further. The one I mentioned there on Dr Contreras, his clinic has been running for 50 years. It was started by his father and, as I said, the success rate there is twice what we've got here. They must be doing something right that we're not doing here. Just go and have a look at it. Where is it? That's across in Mexico, that particular one. So now when I'm flying around a Mayo clinic in Florida to get Mr Campbell, let people answer the questions please, yeah? It would be helpful if we could get some of that information just to look at any convener. Any further questions? As there are no further questions, can I ask the committee what action it would like to take on this petition? Could I perhaps suggest then that we write to the Scottish Government, the Scottish Cancer Task Force and the Cancer Research UK to ask about the extent to which choice of treatment exists for cancer patients and for views of what the petition seeks? So as well to seek their views. Okay then. And obviously taking on board what Mr Adams has alleged with regard to Cancer Research UK, given that they are one of the charities that we intend to write to. Is it possible to wait till we get the information from Mr Adams in regards to evidence from around the world that suggests that it's available and that might be helpful? Yeah, I think it will be helpful but I think in the meantime I think probably we should agree with the action that we need to have more right to these people and then we can win, hopefully both of them will come in together and then we can make a decision on the petition. For option 2 Mr Chairman, instead of option 1? Yeah, well, we've agreed to go for option 1. So can I thank Mr Adams and Mr Campbell for attendance and we close the meeting. Thank you.