 Cy한다,搵o typu'r angen dal rydych chi ar gyfer o hamd snarell waith? Y cadw ei wedi bœ Remit r 게ais o', Pyt i hyn premium i chi eich mewn mfais, o'r neils yng nghefnol, o'r brifnwyl oe 있及ff yng Ngweithail, o constell Waith i Alt differences o 조심 felrhyw o gall мыศ a'u fuddiad, o'r angen heirach chi wedi gwneud, i wneud ar gyfer cael sefydlu eichκε maen nhw'n tych i chi ag yr hyza mobile. Efallai i'w rhesad y gyr Assist巧ad-garedd. I'm very pleased to be able to bring this debate to the Parliament this evening. I know that Robert Watson, who's the chair of the Chas Young Adult Council, was hoping to be here tonight if he has made it a very warm welcome indeed. Robert is a young man with Duchenne's muscular dystrophy. This is a life-limiting condition, and he and others in the Young Adult Council set up the What About Us group and lodged a petition in the Parliament calling for age-appropriate rest-bite care facilities. Robert, together with Kyle Kelly, presented that petition to the Public Petitions Committee in November 2013, and I know that he made quite some impression on the committee members. However, I have to confess that our timing was truly terrible because it happened to be the same day as the launch of the Scottish Government's white paper on independence. You would think that the Scottish Government would have held off for a day or two so that we had some of the publicity, but they didn't do it—I don't know why—but the upshot was that adult respite didn't get as much attention as we believe it deserved. However, I have to say to the minister that we are not giving up. I am grateful to members for staying behind tonight to participate in the debate. Let me be clear because there was much banter across the chamber in the previous debate. I am working hand in glove with Jim Eadie and Jackson Carlaw, together with Robert and his team, to make progress on age-appropriate respite care. Members of the Chas Young Adult Council all suffer from different life-limiting conditions. Many would not have been expected to live beyond childhood, but such are the advances in medicine that people are living much longer, well into their thirties and forties, and I am sure beyond that. That is a really positive story and one that we should celebrate. However, it does, however, bring with it a challenge. Many members in the chamber are aware of the exceptional work that Chas does at their hospices in Balloch—that is Robin House—and at Rachel House in Kinross. They are set up to provide much-needed respite for children with terminal illnesses, and what fantastic places they are to. Such is the pressure on their services that they had to take a decision to limit their respite care to those under 21 years of age. That will affect—they reckon—about 40 young people, but other estimates put at 100 young people who will need to find alternative respite provision. However, whatever the number is, we need to do something about that. Although I recognise that it is very helpful that there is to be a three-year transition period, it is clear that that is quite a short timescale to identify suitable alternative care. Let me touch for a moment on what would be appropriate. That is not about respite care for parents and carers—important, though that may be. That is about respite care for the young men and women who, just like the rest of us, need to have a holiday, need to get away, need to be with others of their own age group. We know that being at home can be quite isolating. Let us face it, we could all do with a break. For many of those adults, it is a chance to socialise with others and their parents can relax safe in the knowledge that the respite provider has the expertise to deal with their son or daughter's very complex condition. For those of you who have visited Chaz, you will know that it is not a sad place, it is filled with laughter and joy. There is always something going on—things to do, people to see, places to chill in. Now imagine that you are an adult aged 21 or over and your respite care is provided in an old people's care home or in the wing of a hospital. That is the reality for some younger adults, and it simply is not good enough. That is not to denigrate old people's care homes or indeed hospitals, but, frankly, respite care provided in these settings is more about whether there is space rather than being determined by the needs of the individual. What we need are respite facilities that are age-appropriate. We need a Chaz for 21 to 45-year-olds or 50-year-olds, but far be it for me to suggest a model. However, that works, and local authorities and health boards have worked with Chaz to develop a funding model and process that has wider application. I know that there has been discussion with Lucky House about converting an existing building to provide appropriate respite. I know that the Prince and Princess of Wales hospital in Glasgow were at one stage looking at developing new facilities of which bespoke respite for this age group could be part. There is no end to the talent, the creativity of people in the voluntary sector wanting to help because they, above all, recognise the challenge of transition. I also recognise that the Scottish Government thinks that there is an issue here, too. The Un Living and Dying Well progress report, published in March 2012, reported on transition services and said that, in many boards, there appears to be a work in progress. I am sure that the minister would agree with me that it is a recurrent comment where it probably exposes the lack of adult services for young people to transition to. It would appear that the position has not really improved. The Muscular Dystrophy campaign commissioned a survey on hospice and respite facilities for young adults, and that is what they found. 85 per cent strongly or very strongly agreed that respite and hospice facilities were vital for my family's quality of life. 92 per cent, a staggering number, reported limits to respite and hospice provision in their local area. 93 per cent said that, if respite or hospice facilities were withdrawn, the impact, and I quote, would be terrible. We can be in no doubt about how important that is. CHAS has commissioned research, helpfully funded by the Scottish Government, to identify the number of children and young people that would benefit from palliative care, and that is welcome. Other research will look at end-of-life clinical problems and the impact that that has on families and services, and that is welcome, too. I recognise that there is some activity, but equally I am impatient, and I think that we all recognise that the clock is ticking. We need someone to pull this together, to drive the discussion forward, to arrive at a positive solution, and I can think of no-one better than the minister himself. He has the skills, he has the understanding to transform adult respite and transition services. Yes, I am being charming because I want something. I ask him tonight to recognise that this issue is not just about party politics. We all recognise that there is a need to do something. I ask him to commit this evening to personally taking that work forward. He will enjoy the support across party, across this Parliament, if he does so. We have an opportunity to lead the way in Scotland, to bring providers and young people together, to develop a national response to the difficulties that they face as they get older. It is a small group of adults, but it is a growing number of adults with complex and exceptional health needs, and I hope that the minister tonight says yes, because we can do better, and with the minister's help, we will do better. There are a number of members who wish to participate this evening, so could I ask members to keep to the four minutes please, Jim Eadie, to be followed by Rhoda Grant? Thank you, Presiding Officer. I congratulate Jackie Baillie on securing this important debate and for bringing the issue of age-appropriate respite services for young disabled adults before the chamber this evening. This issue affects the lives of young men with Duchenne muscular dystrophy, people with other types of muscular dystrophy and neuromuscular and other rare conditions, so it is right that we debate this issue. I would like to place on record my own thanks to my constituent Mark Chapman, who has Duchenne, and who has an inspiration to me and a role model for young people with the condition, as well as thanking John Miller, the Scottish Advocate for Action Duchenne, and the Muscular Dystrophy campaign itself for all that they do to highlight the need for proper support and care packages, investment and research, as well as the specific issues that are the subject of this debate. We should all remember that the work that they do has made an inculculable difference to improving the lives of people with muscular dystrophy, their families and carers. Most of all, I would like to pay tribute to Robert Watson, who has been the driving force behind the What About Us campaign. As Jackie Baillie set out in her speech, the issue is that improvements in care and advances in medical knowledge and healthcare technology are such that life expectancy is increasing for people with these rare conditions. Action Duchenne has highlighted the fact that the standards of care have improved. People are beginning to live much longer than they would previously have done, and over the last 15 years, the adult population of people living in Scotland with Duchenne has almost tripled from 18 in 1999 to 55 in 2013. Robert Watson set out the challenge for politicians and decision makers alike in his petition, which has been signed by over 2,000 people. That is a significant achievement and testament to the strength of feeling which he and others have on that issue. Robert, in his eloquent and hard-hitting speech to the petition's committee, stated, I bet most of you in this room had a holiday this year, a chance to go somewhere different or to a place that you enjoy visiting for a break from the usual routine and stresses of everyday life. That is what a respite break is like for us. How would you feel if you were told that you could never have a holiday again? That is the reality that people such as me and our families who care for us face. Respite breaks are the only type of holiday that a lot of us can go on, so to lose the benefits that they bring would be devastating. Chas, whose headquarters is in my constituency, has set out in a briefing to MSPs the reasons why it is no longer appropriate for them to provide respite services to young adults and the steps that they are taking to ensure that there is a sufficient period of time to transition to new arrangements rather than simply pulling the plug on existing respite services. Robert Watson has set out why appropriate respite services are so vital, not just for young disabled adults but for their families and for their carers. I was struck by what Robert had to say about the benefits of respite services as a chance to have a break from his parents and the normal routine, which is set by the time when the care workers are due to come in. I was also struck by what he had to say in relation to being able to socialise with other people of his age group who have the same or similar conditions and how vital it is that he and his peer group have the opportunity to meet up and to share their experiences. Robert reminded us, having spoken with young people aged between 21 and 45, that it is clear that, all over the UK, there are absolutely no respite services to support those of us who have lived into adulthood, not just in Scotland. Once we turn 21 or in some areas 18, we can no longer attend children's respite services and because there are no suitable adult respite services for us to move on to, our families are left to cope without a break and with no support. Presiding Officer, that situation is not acceptable. In summing up the debate, I know that the skillful understanding and dynamic minister like Jackie Baillie, I too, want something. We'll want to address the calls to action issued by the muscular dystrophy campaign, in particular how the Scottish Government can perform a leadership role in facilitating joint working between health boards, local authorities and charities to provide long-term security for respite services for young disabled adults and to develop an appropriate funding model that will underpin those services. I conclude with a final quote from Robert Watson. Hopefully, with the help of the Scottish Government, Scotland can lead the way in creating these much-needed services for people with long-term complex conditions. I certainly hope that that will be the case and I am delighted to add my voice in Parliament to the What About Us campaign and to bring about the progress which this group of young people and their families surely deserve. Thank you very much. I now call Rhoda Grant to be followed by Jackson Carlaw. Thank you, Presiding Officer. I, too, want to congratulate Jackie Baillie on bringing forward this debate. I think that we all recognise how difficult it is, the transition from child to adult services and we hear about this in the health committee on a weekly basis. It's very difficult with chronic conditions where the help, the support and, indeed, the care that you received sometimes stops altogether once you move from child to adult services. That is even worse for those with life-limiting conditions, where every day is precious and where they were used to maybe additional support while they were in those services provided for young people. Those services look at the whole person. They provide routine, they provide education, socialisation and, indeed, a family centre, taking in the whole family and provide a focus and support for everybody, including the young person involved. The contrast with adult services couldn't be more stark. In many places, those services are almost non-existent. To have days that offer fulfilment and social interaction are thoughts that can never be fulfilled to many people. The opportunities to undertake learning, education and, indeed, access to jobs are a dream. Some organisations are very good at providing those opportunities but we really need to do an awful lot more to provide young adults with the lives that they want to live, albeit that those lives are maybe shorter, then surely they should be more fulfilling as well. Hospital services are also very, very different between child and adult services. Adult services tend to be at the very end of life and not providing the ability to allow someone to live their lives. We need to look at how we provide hospital services for young people with life-limiting conditions. There is respite as well. A number of members have already spoken about that, but I have heard from constituents who say that young people's respite is either at home or indeed in old people's homes. That is really not appropriate for young people who actually need to go out and socialise and meet other people of their own age. The debate is not about keeping young people in children's services but about improving adult services and making sure that we offer people age-appropriate services. I have also been dealing with a number of carers whose children have grown to adulthood and have huge worries. They are an ageing population and when they are maybe not of their full strength, they are being asked to do more and more. When they do receive respite, and sometimes that is a rare occasion, it is often to deal with family crises. One constituent told me about her annual respite being used to deal with her own bereavement of a parent. Another constituent told me that she used the respite to deal with her own illness. Her child was taken in to respite to allow her into hospital, but part of her recovery was supposed to be rest. However, there was no respite. She had to leave hospital supposedly at rest but to take care of her child, who was now a young person, but needed constant care and attention and some heavy lifting. That is surely not good enough, not for the carer and not for the young person. We need to do better and I would add my voice to those of others here tonight to say, let's do something about this. Thanks. Jackson Carlaw, to be followed by Linda Fabiani. Can I associate myself immediately with everything that Jackie Baillie, Jamidie and Rhoda Grant have had to say on this issue? I won't repeat it and my contribution will be brief. It's been a tremendous privilege to work with those who are working in support of those with Duchenne's disease, the volunteers, the families, the young men themselves who are now so able to represent the future for themselves and have done so in this Parliament, to have visited the Children's Hospice Facilities, where the only form of respite for many who a generation ago's prognosis was not one of surviving into adulthood is now available. Of course, we can see as they survive into adulthood how inappropriate that form of respite is for those young men. Nor is it appropriate simply to ask them to sit with elderly people in an old folk's home. We need to have a facility that is appropriate to them and to their needs and I only want to say this. Those are young men who are full of love who are capable of being loving. Those are young men who are full of passion who are capable of being passionate. They are young men full of interests who are capable of expressing those interests and being interesting. Those are young men who are informed who are capable of informing others. Ond mae fawr i'r rhai o'r bwysig i ddim yn bwysig i'r ddoll yn gyfreiddiad. What Jackie Baillie has asked of the minister is what a minister in the last parliament did in a cross-party campaign led by Trish Godman on wheelchairs, where the facilities that we were providing belong to a completely different era and age. We now have young men surviving into adulthood. What we need is cross-party support, led with the same love, passion, interest and commitment from government, I hope that the minister will give a lead to that and a voice to that and that Robert Watson's campaign and all he is sought to represent and achieve is something that this Parliament can point to and say we have done. Many thanks. I now call Linda Fabiani to be followed by Ann McTaggart. Thank you very much, Presiding Officer. Of course, I associate myself too with everything that has been said and I'm glad that Jackie Baillie has brought this debate to the chamber. I'm so glad that Robert Watson and colleagues in the Muscular Dystrophy campaign have raised it. It is a huge issue. Jackson Carlaw announced it very well there. I came to this issue particularly because of a constituency case when someone's father came to see me about it. I must admit that I was pretty ignorant about the facts here. I didn't know much about what was happening with Chaz and that's a bit of what I want to concentrate on. I know that there is a much wider issue here about respite breaks for people transitioning into adulthood, but I would like to use my time to concentrate very much on the circumstances of those who are finding that following the transition period with children's hospice that they can no longer go there for respite. I think that it is a really big deal. A per age of 21 has now been set and I totally get why that has been set. I understand it, but it's interesting when you look at Chaz's evidence that the service users having identified themes has been particularly important at transition stage to enable them to live life to the full. The main ones that jumped out from me for the experiences that I heard from my constituent were social connections and short breaks and Jackson Carlaw was talking about some of that. We're talking here about people who have now been going to Chaz all their lives and suddenly find out that in a very short time this isn't going to happen anymore. There are relationships which they've formed over all the years of their lives that they want to keep up with. That's not an issue for people who are fortunate enough that they can get about on their own and have a huge degree of personal independence. We form relationships and we keep those relationships going. However, when you're not what we call able bodied and you aren't able to get out and about completely independently, that becomes very difficult. That's where the respite is so important. People gravitate to others with shared experiences and similar experiences and they want to keep that up. Chaz has estimated that they currently support 41 young people over the age of 21 in their families. I would like to think of those young people as a specific group at the moment who are going to find their lives and their relationships very changed by this particular policy. That was why, just over a year ago, having learned about this, I did write various letters to people about it and got the facts. I wrote to the cabinet secretary, in fact, for health and wellbeing about it. When I looked out those letters again, there was something that really struck me that I'd actually put it in the letter at the time. This was about the lad in East Kilbride. What his father said to me was that his son had come to think of Chaz as a second home, but it's the next bit, and he said that he feels that he has been penalised for living too long. We can all say, oh, that's not true. Everybody's trying really hard. Of course they are. However, if that's how that boy feels, I think that we have a responsibility to try and take that feeling away. I see that time's running out here. If that's okay, Presiding Officer. The member accepted that Chaz didn't choose to do this, but Healthcare Improvement Scotland required it of them, and they currently have a variation in their registration to allow them to take up to 21. Yes, I would hate to have given the impression, if I did, that Chaz were acting in some way badly. I don't mean that at all. What I would like to finish with, Presiding Officer, is back to the fact that this is only 41 young people here. I think that we can separate them out of the bigger argument, which is about, yes, we need these services, and surely health boards across the country, local authorities across the country, those who have the responsibility for the wellbeing of their citizens, along with the health minister, can come up with some solution that allows these relationships to be maintained while we are looking for better services in the round for everyone. Thank you very much. I'm Mick Taggart, to be followed by Nanette Milne. Thank you, Presiding Officer, and I would like to thank Jackie Baillie for securing this important members' debate this evening. The development of appropriate respite services for young adults is an on-going matter, which is of great concern to many of my constituents in Glasgow. Let me, from the outset, put on record my admiration for the dedication of carers throughout Scotland and the outstanding work that they achieve on a daily basis, and let us recognise how important it is that we do everything in our power to find solutions to problems when and as they arise, because we, as a county, owe a huge debt to their devotion. As a member of the Public Petitions Committee, I have been involved in the progress of the petition lodged by Robert Wilson on behalf of CHAS and the Young Adult Council, and what a wonderful presentation it surely was. The petition calls on the Scottish Parliament to urge the Scottish Government to work with charities to help create suitable respite facilities to younger disabled adults aged between 21 and 45, with life-shortening conditions. Together, the Parliament and Government should be working with other hospices and care providers to see how we can provide facilities for young adults, or committing funds towards creating new purpose-built facilities to support that group. Robert Watson and Kyle Kelly at the committee spoke about the need for respite facilities appropriate for younger adults with severe physical disabilities. They brought to the committee's attention the need of those facilities for both carers and younger adults. I had the pleasure of being invited to a joint visit along with the constituency MSP Jackie Baillie and my colleague Siobhan MacMahon to visit the Robin House children's hospice in Baloch. The work that they do for young people is amazingly wonderful and to be congratulated. A constituent of mine, who had been to Lucky House recently, who equally did a wonderful job, had not enjoyed the experience due to the fact that they were younger than the age group that was receiving the respite there at the time. As Robert Watson said, there is a gap in the respite available for younger adults. That is a huge concern because one of the main parts of the respite is about getting together to socialise with your friends and peers. I share the view that the provision of the respite should be a positive experience for both the carer and the younger adult. Carers and those who receive care both need breaks from the routine. As Robert Watson pointed out for the carer, respite is a chance for them to relax, recharge their batteries and generally take a break. Likewise for the young adults, respite care allows for a change from the everyday living. The positive effects of respite care should not be restricted to families of those who are under 21 and over 45. It is my hope that, across this Parliament, we all should continue with the Scottish Government to close the gap left behind by the chances of policy change and support the creation of respite facilities geared towards young adults. I hope that the minister will concentrate his efforts to work with the charities, hospices and care providers in order to co-ordinate resources and to create a solution to the gap for young adults with disabilities. Thank you Jackie Baillie for bringing this debate before Parliament. I would also like to acknowledge her tireless efforts to help and support people in Scotland living with muscular dystrophy, not least through the Parliament's cross-party group for this condition. I am a relative newcomer to the group and I have been greatly impressed by its practical discussions led by Jackie Baillie and the can-do attitude of the group's members in trying to improve services for young men with Duchenne muscular dystrophy and for people with other types of muscle wasting disorders. The What About Us campaign on hospice and respite facilities driven by Robert Watson has served to highlight a really important issue for many young people with disabilities who find that once they become adults there is really nowhere for them to go if they and their parents or carers want to break from their normal routine and an opportunity to socialise with people of their own age group who have similar problems. There are currently around 100 young adults in their families in Scotland in this situation and that number will undoubtedly increase over the years. But as Robert Watson said in his powerful speech to the Public Petitions Committee, there are no services for people in our age group, nothing but the chaz service for children and hospices for older adults who are mainly suffering from cancer or other terminal illnesses. It seems that, as life expectancy increases, the support that is available to us decreases. He concludes by pointing out that respite breaks enable his parents to continue their caring role in the long term. Without those breaks, he said, it would become too difficult for my parents to care for me and it would cost the Government a lot of money to provide 24-7 care for me. We all know the truth of Robert's words, but we also know that inadequate access to respite care is just one of the many difficulties faced by young people with severe disabilities and life-limiting conditions as they move from children's to adult services, not least barriers to accessing suitable facilities due to local authority funding policies, because respite care for young people with high levels of need is very expensive to provide. The issue of suitable respite provision for young adults has, of course, been brought into sharp focus by the decision of chaz to phase out its service for young adults over the age of 21. If new provision is to be in place before this happens, there is an urgent need for the Scottish Government, health boards, local authorities and the third sector to get together to find a way through the difficulties. With a small number of people involved in each council area, it is clear that dedicated local facilities would be impossible to finance and sustain. A national solution would require co-operation and complex negotiations over access and finance. Hopefully, that might be facilitated by the on-going development of health and social care integration. A one-size-fits-all solution is unlikely to succeed, and a range of person-centred options may well be what is needed for the disparate population who need appropriate respite provision. As discussed by Mark Hazelwood, the chief executive of the Scottish partnership for palliative care, there may be differences in preference as well as need. For example, between respite provision at a dedicated centre or being supported to access a mainstream holiday facility, and the latter brings to my mind once again the excellent provision at crafty holidays in upper D-side, in my own region, where there are excellent facilities to cater for people with a whole range of minor or serious disabilities, as well as able-bodied people looking to have a relaxing holiday in a beautiful part of the world. The current debate, of course, is only needed because of the successful treatment of conditions like Duchenne muscular dystrophy, which allows many more people to survive into adult life. However, the need for respite provision for young adults is now urgent, and I do hope that the Government will accept that this has to be a partnership effort and will bring together stakeholders, including the young people themselves, from right across Scotland to thrash out the difficulties and develop the solutions required to deal with a growing problem that is only going to get worse if action isn't taken soon. I commend Jackie Baillie, Robert Watson and all those who have worked so hard to raise the profile of this urgent need, and I hope that it would be too long before they achieve the results that they are seeking. Many thanks. Before I call Jane Baxter, I have to advise the chamber that, due to the number of members who still wish to contribute to the debate, I am minded to accept a motion from Jackie Baillie under rule 8.14.3, that the debate be extended by up to 30 minutes. Could I propose that motion accordingly? We could indeed, as Parliament agreed. We are. I now call Jane Baxter to be followed by Graeme Dey. Thank you, Deputy Presiding Officer. I would like to join others and congratulate my colleague Jackie Baillie on securing this debate and on the important work that she continues to do on this issue. The subject of today's debate is extremely important, and I would like to start by paying tribute in particular to Robert Watson and to Kyle Kelly and the other young people involved in the What About Us campaign. I was moved by Robert Watson's evidence to the Petitions Committee when he told members a little bit of what respite care meant to him, and he said, I can get up when I want, go to bed when I want, and get a shower when I want, without that being set by the time when the care workers are due to come in. That is something that we take for granted. It is something that all of us do every day, and yet we do take it for granted, but it is not something that people with muscular dystrophy can do independently. It is just little things like that that make you step back and think, gosh, this is really very important, and it is something that I do not think about enough, and it is something that we have to consider very seriously. Of course, it is not just the young people to whom having access to quality respite care matters, it is their families, many of whom will be full-time carers. As others have said, I have heard first-hand accounts from parents of the stress that caring for the grown-up children can cause, and the importance to all involved of getting a break. The muscular dystrophy campaign has found that 93 per cent of relevant people said that the withdrawal of respite services in that area would have a terrible impact on their lives. The reasons behind the situation that is subject to this debate, the absence of suitable hospice and respite care, are in some ways good reasons. Improved healthcare means that more and more people with life-limiting conditions are living much longer than it was ever envisaged they would, but planning how they and their families will be able to get the breaks they need has not kept up with this. Instead, available respite care is often targeted at children or older people, not the people that it is appropriate for you to spend your break with if you are a young man or woman. Our job in this Parliament is therefore to help to ensure that those young people have access to the facilities and resources to ensure that they can live life to the fullest possible extent. That has got to mean age-appropriate respite care. Rachel House and Ken Ross, my region, is one of the chaz hospices that has to reduce the age range of people that it looks after. Rachel House does fantastic work and I have nothing but respect and admiration for the staff who do such a good job there. The work of Rachel House is transformative for the young people and their families who are supported there, but I question whether it should always fall to charities to provide these essentials. Chaz currently has to raise over £9 million each year to provide its hospice services on which over 300 families across Scotland depend. The health minister will know that I have been critical of health services in my area and continue to be so. Health boards have a crucial role to play in addressing this problem, but tonight I am going to match the charm and persuasive skills of Jackie Baillie and Jim Eadie and just ask nicely whether the minister in his contribution at the end could say what discussions he has had with health boards and with other stakeholders in seeking to find a solution to this situation. Secondly, could he share with us the Government's thinking on what suitable alternative provision could be established? Thank you. I thank you, and I call Graeme Dey to be followed by Shaford MacMahon. I, as others have congratulated Jackie Baillie on bringing forward this motion. This is a subject matter, which, as we have heard from the contributions tonight, from right across the chamber rises above party political tribalism. It also transcends the funding blame game that is so often played out in the political arena. The simple fact is that addressing this hugely important issue requires Government, central and local and the NHS to come together and do the right thing. In responding to the challenge before them, they must, more than anything, listen to the views of the young people at the very centre of the situation, for respite and hospice provision must be shaped to meet the needs of those who are requiring it. This is not an easy subject. Anticipating why he is being cut tragically short is on the one level of cause for sadness. The fact that we are required to address it also off us hope, because the reason we are having to consider appropriate hospice and respite care for young disabled adults, is because many more young such youngsters are living longer into adulthood. In the case of Deshaigne's muscular distry, for example, as we have heard, that can be into 20s, 30s and even 40s. It is utterly inappropriate that young men with this condition face respite provision, which effectively sticks them in an old folks home environment. Just as catering for young adults in this sort of age bracket and the chast type setting really doesn't meet their needs, providing respite in traditional adult settings isn't what's needed either. Like others participating in this debate, I attended the event here in Parliament back in June, sponsored by Jackson Carlaw and hosted by Action Deshaigne, to highlight the needs of young adults. It was quite a moving experience listening to Robert Watson articulate the shortcomings and provision and identify what's needed. As Robert put it, respite is as close to a holiday, a break from the usual routine and stresses of everyday life as young men in his situation get. It should be a chance to socialise with people of a similar age and escape the isolation that comes with being at home most of the time. It should also offer the families a break from the enormous caring responsibilities that they have and give them the chance to recharge their batteries. Something they'll only do if they're confident their loved one is somewhere they'll be able to fully enjoy. There are five calls to action contained within the muscular distry report to give us a break. Reading through them in advance of the debate, I found myself nodding my head in agreement with each and every one. Can I conclude by, as Jim Eadie did, pay tribute to John Miller, advocacy officer for Action Deshaigne. John, as many members know, is a tireless campaigner for Action Deshaigne. He helped to facilitate that meeting here in June and members will not be surprised to learn. He was active in social media, encouraging attendance at tonight's event. John is a remarkable man, a force of nature who's done incredible things to raise awareness of Deshaigne's muscular dystrophy. As an MSP, his is the phone call or email, you know there's no avoiding because he will track you down eventually. As a whip in this Parliament, I wish my encouraging or imploring of backbenchers was half as effective as John's. All seriousness, important matters such as that before us this evening require people like John Miller campaigning on their behalf. So can I genuinely thank John as well as those behind the muscular dystrophy and what about us campaigns for shining a light on this situation and finish by saying I look forward to hearing what the minister has to say, especially after the way in which he's been buttered up all night. As a member of the cross-party group on pallid of care, I'm pleased to be able to take part in this evening's debate and I thank my colleague Jackie Baillie for bringing this matter to the attention of the chamber this evening. Being one of the last to contribute to the debate, I'm sure that I'll be repeating many of the key points many members have made in their speeches tonight. However, I wanted to be able to add my voice to those calling for a solution to the horrendous problem currently being experienced by those seeking pallid of care when they transition from child to adult services. Having visited both Robin and Rachel House, I know of the tremendous work that Chas does not only in supporting young people requiring their services but also supporting their friends and family from the very first stages to the very last stages of their life, be that providing respite care at home care, spiritual care and of course end-of-life care. It is a vital service and one that many many people have benefited from over the last 21 years. As others have mentioned, Chas currently supports 41 young people over the age of 21 in their families. That's 41 families in young people that wouldn't get the support that they require if the charity decided they had to remove the funding now. Where would those 41 young people go to? Who would care for them in the ways that they require? Who would support them in the ways that Chas does now? Would they turn to their health board, their local authority, another charity or would they, as is often presumed, turn to another hospice? We all know that the current hospice provision in Scotland does not meet the demand of the parents currently requiring the service. I have had family members who have been fortunate to skewer a bed at St Andrew's hospice in Airdrie at their time of need. I know firsthand how amazing the staff are at that hospice. They go out of their way not only to support your loved one but also to make sure that you have the support that you need to make it through that day. I know that that hospice would love to provide the support to all those who require it, but they just don't have the capacity to do so. Currently they don't have the beds to support the demand on their services and I'm sure that they are not the only hospice in Scotland facing this problem. That is the current situation. However, following Chas's understandable decision to introduce their transitional policy, hospices such as St Andrew's will be required to help those currently being helped by Chas. That would be helping young people, people of my age and lower in a hospice not fit for their needs or their family's needs. Of course, if a bed couldn't be found for you, you would have to turn to your health board or local authority. Who's going to fund this? Who's going to make sure that such services would meet all the needs of the young person and their families as Chas currently does? Members will know that I tabled a number of amendments to the Children and Young Persons Bill in relation to transition services. Those amendments were primarily in relation to disabled young people and the issues that they experienced in their day-to-day lives, but the main aim of those amendments was to give support to disabled people and their families when they require it. It is a shame that the Government could not back those amendments at that time. I'm sure that the addition of the amendments to the bill would have made the situation of transition a lot better for disabled young people and would have played a part in addressing the concerns that many have in relation to palliative care today. When writing that speech, I asked myself the simple question, would I be content or happy with the level of services offered if it was me or my family member? The answer was a resounding no. Therefore, I won't ask another family or young person to do what I wouldn't do. I urge the minister to take on board the requests in tonight's debate, listen to the requests by Robert Watson and to change the way we look at palliative care provision in Scotland for good. Sometimes, as Graham Day alluded to, we spend a lot of time talking about important things such as the economy, and we have just had two years and a bit of that. While those are important, we have never lost sight of the kind of society that we wish to build—one that continues to have the foundation, I believe, of Scottish care, compassion and support. I welcome the debate tonight because that brings us home. My name is Charles, better known, sometimes regrettably and historically, even hysterically, as chick, but also known to some as Chaz, C-H-A-S. That acronym is a greater connotation in terms of being the Children's Hospice Association in Scotland. Living as I did in Milnerthawr when I came back from Europe in the mid-1990s, I was able on occasion to visit a Rachel House in Kinross. Those visits put my focus on increased business turnover and pristine balance sheets into its true perspective. Those visits, those occasions, never left me because they were indelibly etched into my brain, even my soul. Jackson Carlaw's emotional and eloquent speech tonight indicates how much that affects us. Occasionally, too infrequently, they are brought to the surface, as it was when, as the vice-community of the Petitions Committee, I was privileged to be there when we were challenged by an excellent petition brought by Robert Watson on behalf of the Chaz young adult council. He drew on the experience that adequate provision of respite care is essential to minimise the effects of illness and disability and so to improve the quality of life for those with disabilities. As Robert presented for young people over the age of 18, they are restricted to 21, there may be very little suitable respite provision, nor was there the intended, consequential and needed break for those who look after those with disabilities. If it is a problem of creating suitable respite services for younger disabled adults with life-limiting conditions, that arises partly because of medical advances. However, medical problems do not come with bird decards or a timetable. The onset of a disease at a very early age can transit from a very young child to a young adult age. No one says that the age of 21 to the disease stops. Yes, respite care in tandem with clinical care may be a bit more expensive for young adults and their carers, but with some ingenuity and the will across all NHS health boards and local authorities, we have to consider a reduction in the cost of the health service because respite actually provides a break for carers and reduces their individual health dependency on the NHS, and they have a health dependency. The Petitions Committee received a letter from an organisation that shall remain nameless, but I may just quote briefly. It said that the setting up of a respite service might have knock-on effects to existing respite services and make them unviable, and then it went on to talk about the expense. No mention of sociability or the frame or frames of reference of those young with time-life disabilities or indeed that of the carers associated with them. It is estimated that the number of respite weeks provided in Scotland has increased by 12,650 weeks—7.3 per cent—between 2007-08 to 2012-13, and that is commendable. However, it is hoped that effective provision of more respite care will be generated through the integration of health and social care. That said, still, a sort of damocles hangs over the heads of those young people with life-limiting conditions. The local authorities and the local NHS boards have, I believe, a responsibility to look at those services in the round and to consider what I believe are advantageous benefits, including cost benefits of the need and the demand for substantial respite care and service for those young adults. I begin by congratulating Jackie Baillie on securing time for this important debate. I thought that it has been a very interesting and thoughtful debate and a number of the contributions. I also want to take this opportunity to offer my thanks to Robert Watson for submitting his petition to Parliament last November and also for the work that has been undertaken by the Muscular Dystrophy campaign to give us a break report and also the action to share what about us report as well. I fully recognise the important value that respite breaks provide to young people in particular, not just in providing a break for the people who care for them on a regular basis but also the opportunity that it gives them to socialise and to mix with individuals of their own age group. They need to make sure that that can take place within an age-appropriate setting. I should say that providing this type of respite for young disabled people across the country, if I can just digress slightly, is not a new challenge. There has been a long-standing challenge in being able to provide good high-quality respite for young people with disabilities in a range of settings. For example, Red Cross House in Inverness had a traditionally very good reputation for providing that for individuals in the highlands, which I have experienced in my previous role. There was also the Sue Ryder centre, which was in West Lothian, which again provided very specialist care for young people with conditions such as MS, etc., who were not appropriate to go into a nursing home or a hospital setting. Many of those facilities do not exist now and there continues to be a challenge in being able to meet the necessary respite needs of young people with a disability. However, I recognise the important role that such respite can provide to those with life-limiting conditions such as muscular dystrophy. In Jim Eadie's contribution, he highlighted the important value that such respite provision can have, as did Jackson Carlaw in his contribution. It made very clear about how important young people feel that it can be. That is why it is also about trying to make sure that we deliver respite to young people in the right way, because it has to be person-centred, it has to be safe and it has to be effective for them. In order to achieve that, it is not simply a case of the Government deciding what should happen. It is about working with the right stakeholders in order to try and achieve that. That is something that requires some concerted effort. Several members in the net mill and Chick Brody have made mention of this as well. There is the opportunity that comes from the integration of health and social care through the joint commissioning between local authorities and health boards and how they deliver services to make sure that they are much more reflective of the needs of their local community. Some of the joint work that will be taken forward in that area gives us an opportunity to achieve some greater joint up working in this area. I also want to mention another option, which is self-directed support, which gives people the opportunity to take forward what is appropriate care for them in a manner in which they feel is best suited. I want to turn back to the issue around the important value that many people have found from Chaz. I recognise having visited Chaz as well. As Jackie Baillie said, it is not a place that you go into, which is mournful. In any way, it is a cheery place and it is a very empowering place. It is empowering for those who make use of its facilities in itself. It is an extremely rewarding place for the individual and for the families because of the fantastic level of care that they provide to them. I understand and recognise the challenges that we now face. Health care provision improves through greater provision or improvements in medication, health technology, which provides us with a challenge with those who are life limiting conditions that are now living longer. A good challenge for us to have, but one that I recognise that we need to face up to and address much more effectively. I want to turn to a couple of points. I am sure that no member would wish to give the impression that, since the petition has been lodged, the Scottish Government has not undertaken any work in this area in order to try and address this matter. The Cabinet Secretary for Health and Sport, Alex Neil, stated in his letter to the Health and Sport Committee and has also stated in his letter to Jackie Baillie that there are a number of actions that have been taken forward. For example, officials have been gathering information from our carers information strategy leads and NHS boards and our local authorities. An information that we have gathered has indicated that there are pockets of very good examples of what has been undertaken, but it has also highlighted areas in which there is a lack of consistency across the country and there are deficiencies as well. We have also been working with COSAR and we are gathering three key areas. We are now quite advanced in this process around establishing Scottish data to determine the scale of the issue, so we understand the numbers properly that we are talking about because I recognise that it is a small number, but we need to make sure that we understand that properly around how we move forward. We are also mapping out the breadth, capacity and equality of existing services. There are other options, but we need to look at those different models and we want to map those out effectively. Another important piece of work that we are undertaking is analysing the economic evidence relating to running a bespoke service in its own. There is a range of work that we are taking forward. I have heard the comments and issues that members have raised here tonight. In what feels to me a level of frustration, what may appear as a lack of progress in getting action to move forward on this issue. In the desire to try and be as helpful as I can, what I will undertake is to conven a meeting with the interested parties to look at what we can do further in order to try and move the issue on to the next stage. Where that will take us to will be dependent on some of the evidence and information that we have gathered to date, but I hope that members will be reassured that the cabinet secretary has an interest in this matter. I have as well, but if it would offer them further reassurance and also to those who are listening in the gallery here tonight, I will conven a specific meeting in order to look at where we are at at the present point and to look at what further steps we need to take in order to drive this issue forward. It is in everyone's interest to make sure that those young disabled people within our communities receive the best support and the opportunity to lead as fulfilling and as fuller life as possible. Thank you very much. That concludes Dickey Bailey's debate on absence of suitable hospice and respect facilities for young disabled adults. I now close this meeting of parliament.