The final item of business today is a members’ business debate on motion S4M-10901, in the name of Jackie Baillie, on the absence of suitable hospice and respite facilities for young disabled adults. The debate will be concluded without any question being put.
Motion debated,
That the Parliament is concerned at the absence of suitable hospice and respite facilities for young disabled adults in Dumbarton and across Scotland; understands that the Children’s Hospice Association Scotland (CHAS), which currently provides services to approximately 100 young adults, has been forced to impose an upper age limit on its facilities due to increased demand on its service capacity by children; notes that this upper age limit will come into force in approximately three years’ time; believes that, with life expectancy for conditions such as Duchenne muscular dystrophy increasing, the need for age-appropriate hospice and respite facilities for young disabled adults will only grow with time; notes the calls of the Muscular Dystrophy Campaign and the What About Us? campaign group for new proposals to be brought forward as a matter of urgency, and further notes calls for an urgent government review of the issue, bringing together NHS boards, local authorities, hospice providers and young people.
17:47
I am very pleased to bring the debate to Parliament this evening. Robert Watson, who is the chair of the CHAS young adult council, was hoping to be here tonight. If he has made it, I offer him a warm welcome. Robert is a young man with Duchenne muscular dystrophy, which is a life-limiting condition. 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 respite care facilities. Together with Kyle Kelly, Robert presented that petition to the Public Petitions Committee in November 2013 and made quite an impression on the committee’s members.
However, our timing was truly terrible, because that was the same day as the launch of the Scottish Government’s white paper on independence. One might have expected the Scottish Government to have held off for a day or two so that we could have had some of the publicity, but it did not do so. I do not know why. The upshot was that adult respite did not get as much attention as we believe it deserves; however, I say to the Minister for Public Health that we are not giving up.
I am grateful to members for staying tonight to participate in the debate. There was much banter across the chamber in the previous debate, so let me make it clear that I am working hand in glove with Jim Eadie and Jackson Carlaw, together with Robert Watson and his team, to make progress on age-appropriate respite care.
The members of the CHAS young adults council all suffer from various life-limiting conditions, and many would not previously have been expected to live beyond childhood. However, such have been the advances in medicine that people with such conditions are living much longer—well into their 30s and 40s and beyond. That is a really positive story that we should celebrate.
Nevertheless, it brings with it a challenge. Many members are aware of the exceptional work that CHAS does at its hospices, Robin house in Balloch and Rachel house in Kinross. They are set up to provide much-needed respite for children who have terminal illnesses, and what fantastic places they are. Such is the pressure on their services, however, that they had to take a decision to limit their respite care to people aged under 21. They reckon that that will affect about 40 young people, although other estimates put the figure at 100 young people who will need to find alternative respite provision. Whatever the number is, we need to do something about it, and although it is helpful that there is to be a three-year transition period, that is quite a short timescale to identify suitable alternative care.
Let me touch for a moment on what would be appropriate. This is not about respite care for parents and carers, important though that may be. This is about respite care for young men and women who, just like the rest of us, need to have a holiday, to get away and to be with others of their own age group. Being at home can be quite isolating and—let us face it—we can all do with a break, but for many of those young adults respite care 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’s or daughter’s complex condition.
Members who have visited CHAS services will know that they are not sad places, but are filled with laughter and joy. There is always something going on—things to do, people to see and places to chill in. I ask members to imagine that they are an adult aged 21 or over, and their respite care is provided in an old people’s care home or a hospital wing. That is the reality for some younger adults, and it is simply not good enough. That is not to denigrate old people’s care homes or hospitals but, to be frank, respite care that is provided in those settings is more about where there is space, rather than being determined by individuals’ needs.
We need age-appropriate respite facilities. We need a CHAS for 21 to 45-year-olds, or 50-year-olds. Far be it from me to suggest a model, but CHAS’s approach works, and local authorities and health boards have worked with it to develop a funding model and process that has wider application.
There has been discussion with Leuchie house about converting an existing building to provide appropriate respite, and at one stage the Prince and Princess of Wales Hospice in Glasgow was looking at developing new facilities, of which bespoke respite for this age group could be a part. There is no end to the talent and creativity of people in the voluntary sector who want to help, because they, above all, recognise the challenge of transition.
The Scottish Government believes that there is an issue here, too. Its “Living and Dying Well—Progress Report” in March 2012 reported on transition services and stated:
“In many Boards this appeared to be work in progress.”
I am sure that the Minister for Public Health will agree that that recurring comment exposes the lack of adult services to which young people can transition.
It appears that the position has not really improved. In a survey that the Muscular Dystrophy Campaign commissioned about hospice and respite facilities for young adults, 85 per cent strongly or very strongly agreed that respite and hospice facilities are vital for their family’s quality of life. A staggering 92 per cent reported limits to respite and hospice provision in their local area, and 93 per cent said that, if respite or hospice facilities were withdrawn, the impact would be “terrible”. We can be in no doubt about how important the matter is.
CHAS has commissioned research, helpfully funded by the Scottish Government, to identify the number of children and young people who would benefit from palliative care, and that research is welcome. Other research will look at end-of-life clinical problems and the impact that they have on families and services. That, too, is welcome.
There is some activity, but I am impatient, and we all recognise that the clock is ticking. We need someone to pull all that together, to drive the discussion forward and arrive at a positive solution, and I can think of no one better than the Minister for Public Health. He has the skills and the understanding to transform adult respite and transition services. [Interruption.] Yes, I am being charming because I want something. I ask him to recognise that the issue is not about party politics; we all accept that there is a need to do something. I ask him to commit this evening to taking this work forward personally. He will enjoy support from across the parties in Parliament if he does so.
In Scotland, we have an opportunity to lead the way by bringing providers and young people together and by developing a national response to the difficulties that people face as they get older. We are talking about a small but growing number of adults who have complex and exceptional health needs. I hope that the minister will say yes tonight, because we can do better and, with his help, we will do better.
A large number of members wish to participate, so I ask members to keep to four minutes.
17:55
I congratulate Jackie Baillie on securing this important debate and on bringing the issue of age-appropriate respite services for young disabled adults before Parliament.
The issue affects the lives of young men with Duchenne muscular dystrophy, and people with other types of muscular dystrophy and neuromuscular and other rare conditions, so it is right that we debate it.
I record my thanks to my constituent Mark Chapman, who has Duchenne and who is an inspiration to me and a role model for young people who have the condition. I also thank John Miller, who is the Scottish advocate for Action Duchenne, and the Muscular Dystrophy Campaign for all that they do to highlight the need for proper support, care packages and investment in research, as well as the specific issues that are the subject of the debate. We should all remember that the work that they do has made an incalculable difference in improving the lives of people with muscular dystrophy, their families and carers.
Most of all, I pay tribute to Robert Watson, who has been the driving force behind the What About Us? campaign. As Jackie Baillie stated, the issue is that improvements in care and advances in medical knowledge and healthcare technology are such that life expectancy is increasing for people who have these rare conditions. Action Duchenne has highlighted the fact that, as standards of care have improved, people are beginning to live much longer than they would have done previously. Over the past 15 years, the adult population of people living in Scotland with Duchenne has almost tripled, from 18 people in 1999 to 55 people in 2013.
Robert Watson set out the challenge for politicians and decision makers alike in his petition, which has been signed by more than 2,000 people. That is a significant achievement and is a testament to the strength of feeling that he and others have about the issue.
Robert, in his eloquent and hard-hitting speech to the Public Petitions Committee, stated:
“I bet that 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 the 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, which has its headquarters in my constituency, has set out in a briefing to MSPs the reasons why it is no longer appropriate for it to provide respite services to young adults, and the steps that it is taking to ensure that there is a sufficient 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 own age
“who have the same or similar conditions”—[Official Report, Public Petitions Committee, 26 November 2013; c 1871.]
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 onto, our families are left to cope without a break and with no support.”
That situation is not acceptable.
I know that the skilful, understanding and dynamic minister—as Jackie Baillie does, I want something—will want to address the calls to action that have been issued by the Muscular Dystrophy Campaign, in particular in relation to how the Scottish Government can perform a leadership role in facilitating joint working between health boards, local authorities and charities in order 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 quotation 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.
I am delighted to add my voice in Parliament to the What About Us? campaign and to bring about the progress that this group of young people and their families surely deserve.
17:59
I, too, congratulate Jackie Baillie on bringing the debate to the chamber. I think that we all recognise the difficulty of the transition from child to adult services, and we hear about it weekly at the Health and Sport Committee.
It is very difficult for someone with a chronic condition when the help, support and care that they are receiving stops altogether when they move from child to adult services. The situation is even worse for those with life-limiting conditions, for whom every day is precious, and who may have been used to receiving additional support as part of the services that are provided for children. Those services deal with the whole person. They provide routine, education and opportunities for socialisation, and they are family centred to include the whole family and provide a focus and support for everyone, including the young person.
The contrast with adult services could not be more stark. In many places, adult services are almost non-existent. The dream of having days that offer fulfilment and social interaction can never be fulfilled for many people. Opportunities to undertake learning and education, and to gain access to jobs, are also only a dream. Some organisations are very good at providing those opportunities, but we need to do an awful lot more to provide young adults with the life that they want to live. Those lives may be shorter, so they should surely be more fulfilling.
Hospice services for adults are very different from those for children. Adult services tend to be offered at the very end of life rather than providing someone with the ability to live their life. We need to consider the way in which we provide hospice services for young people with life-limiting conditions.
A number of members have mentioned respite care. I have heard from constituents who say that young people’s respite care takes place either at home or in old people’s homes. That is really not appropriate for young people, who need to go out and socialise and meet other people of their own age.
The debate is not about keeping young people within children’s services, but about improving adult services and ensuring that we offer people age-appropriate services. Recently I have been dealing with a number of carers whose children have grown to adulthood, and those carers have huge worries. They are part of an ageing population, and are being asked to do more and more when they are not perhaps at full strength. On the rare occasion when they receive respite, it is often to allow them to deal with family crises. One constituent told me that her annual respite was used to deal with bereavement when she lost her own parent. Another told me that she used the respite to deal with her own illness: her child was taken into respite care to allow her to go into hospital. Part of her recovery supposedly involved rest, but there was no respite. She had to leave hospital to take care of her child, who was now a young person who needed constant care and attention and some heavy lifting.
That is surely not good enough, neither for the carer nor for the young person. We need to do better. I add my voice to those of other members in the chamber to say, “Let’s do something about this.”
18:03
I associate myself immediately with everything that Jackie Baillie, Jim Eadie and Rhoda Grant have said on the issue. I will not repeat any of it, and my contribution will be brief.
It has been a tremendous privilege to work with those who are working in support of people with Duchenne’s disease. That includes the volunteers, the families and the young men themselves, who are now able to represent their future for themselves as they have done in the Parliament.
I have visited the children’s hospice facilities, which are currently the only form of respite available for many who, a generation ago, would have been given a prognosis of not surviving into adulthood. Of course, we can see, as those young men survive into adulthood, how inappropriate that form of respite is for them. Nor is it appropriate simply to ask them to sit with elderly people in an old folks’ home. We need to have a facility that is appropriate for them and for their needs.
I will say only this. Those young men are full of love, and capable of being loving; full of passion and capable of being passionate; full of interests and capable of expressing those interests and being interesting; and they are informed and capable of informing others. Those young men are friendly, and now wish to be able to spend time with friends.
Jackie Baillie has asked the minister to do what a minister in the previous session of Parliament did in relation to wheelchairs, after a cross-party campaign that was led by Trish Godman. In that case, the facilities that we were providing belonged to a completely different era. We now have young men surviving into adulthood. We need cross-party support, led with the same love, passion, interest and commitment from Government. I hope that the minister will give a lead and a voice to that. I hope that, in future, the Parliament can point to Robert Watson’s campaign and all that he has sought to represent and achieve and say, “We have done that.”
18:05
I, too, associate myself with everything that has been said. I am glad that Jackie Baillie brought the debate to the chamber and that Robert Watson and his colleagues in the Muscular Dystrophy Campaign have raised this huge issue, which Jackson Carlaw enunciated very well.
I came to the issue 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. I did not know much about what was happening with CHAS. Although I know that there is a much wider issue about respite breaks for people who are transitioning into adulthood, I will use my time to concentrate on the circumstances of those who find that, following the transition period, they can no longer go to a children’s hospice for respite. I think that that is a really big deal.
An upper age of 21 has now been set. I totally get why it has been set—I understand it. Evidence from CHAS states:
“service users have identified ... themes as being particularly important at transition stage to enable them to ‘live life to the full’”.
The main themes that jumped out at me, because of the experiences that I had heard about from my constituent, were social connections and short breaks. Jackson Carlaw talked about some of those issues.
We are talking about people who have been going to CHAS all their lives and who have suddenly found that, in a very short time, that is not going to happen any more. They have formed relationships over all the years of their lives and they want to keep them up. That is not an issue for people who are fortunate enough to get about on their own and who have a huge degree of personal independence. We form relationships and we keep them going. However, for someone who is not what we call able bodied and who cannot get out and about completely independently, that becomes very difficult. That is where respite is so important.
People gravitate to others with shared and similar experiences and they want to keep up those relationships. CHAS has estimated that it currently supports 41 young people over the age of 21 and their families. I think of those young people as a specific group who will find their lives and relationships very changed by the policy. That is why, just over a year ago, having learned about the issue, I wrote various letters to people about it and got the facts. I wrote to the Cabinet Secretary for Health and Wellbeing and, when I looked out the letter again, I was really struck by something that I had put in it about the lad in East Kilbride. His father told me that his son had come to think of CHAS as a “second-home”. He went on to say that his son felt
“penalised for living too long”.
We can all say that that is not true and that everybody is trying really hard. Of course they are, but if that is how that boy feels, we have a responsibility to try to take the feeling away.
I see that my time is running out.
Will the member take a tiny intervention?
I will, if that is okay, Presiding Officer.
Briefly, please.
Does the member accept that CHAS did not choose to do that? Healthcare Improvement Scotland required it, and CHAS currently has a variation in its registration to allow it to take people up to 21.
I would hate to have given the impression, if I did, that CHAS was acting badly in some way. I do not mean that at all.
I return to the fact that we are talking about only 41 young people. I think that we can separate them out from the bigger argument, which is about the fact that we need those services. Surely health boards and local authorities across the country, and those who have responsibility for the wellbeing of their citizens, along with the health minister, can come up with some solution that allows relationships to be maintained while we are looking for better services in the round for everyone.
18:10
I thank Jackie Baillie for securing this evening’s important members’ debate. The development of appropriate respite services for young adults is an on-going matter that is of great concern to many of my constituents in Glasgow. At the outset, I record my admiration for the dedication of carers throughout Scotland and for the outstanding work that they achieve daily. 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 country 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 that was lodged by Robert Wilson on behalf of CHAS young adult council, and I heard the petitioners’ wonderful presentation. The petition calls on the Scottish Parliament to urge the Scottish Government to work with charities to help to create suitable respite facilities for younger disabled adults who have life-shortening conditions and are aged between 21 and 45. Parliament and the Government should be working together with hospices and care providers to see how we can provide facilities for young adults, or committing funds to creating new purpose-built facilities to support that group.
Robert Watson and Kyle Kelly spoke at the committee about the need for respite facilities that are appropriate for younger adults who have severe physical disabilities. They brought to the committee’s attention the need for those facilities both for carers and younger adults. I had the pleasure of being invited, along with constituency MSP Jackie Baillie and my colleague Siobhan McMahon, to visit the Robin house children’s hospice in Balloch. The work that is done there for young people is amazing and the staff are to be congratulated.
A constituent of mine who had recently been to Leuchie house, which does an equally wonderful job, had not enjoyed the experience because my constituent was younger than the age group that was receiving respite there at the time. As Robert Watson said, there is a gap in the respite that is available for younger adults. That is a huge concern, because one of the main parts of respite is about getting together to socialise with friends and peers.
I share the view that provision of 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 to relax, recharge their batteries and generally take a break. Likewise, for the young adults, respite care allows for a change from everyday living. The positive effects of respite care should not be restricted to the families of those who are under 21 and over 45.
It is my hope that all of us across Parliament should continue, with the Scottish Government, to close the gap that is left behind by CHAS’s policy change, and that we should support the creation of respite facilities that are geared towards young adults. I hope that the minister will concentrate his efforts on working with charities, hospices and care providers to co-ordinate resources and create a solution to the gap for young adults with disabilities.
18:14
In thanking 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 muscular dystrophy cross-party group. I am a relative newcomer to the group, and I have been greatly impressed by its practical discussions, which have been 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, which is being 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 a break from their normal routine, and they want an opportunity to socialise with people of their own age group who have similar problems.
There are currently about 100 young adults and their families in Scotland in this situation, and that number will undoubtedly increase over the years. However, in his powerful speech to the Public Petitions Committee, Robert Watson pointed out a problem. He said:
“There are no services for people in our age group—there is nothing between CHAS services for children and hospices for older adults who are in their 50s and 60s, who are mainly suffering from cancer and other terminal illnesses.”
He also said that
“It seems that, as life expectancy increases, the support that is available to us decreases.”
He concluded by stating that
“adult respite services … enable my parents to continue their caring role in the long term. Without those breaks, it would become too difficult for my parents to continue to care for me, and it would cost the Government a lot more money to provide 24/7 care for me.”—[Official Report, Public Petitions Committee, 26 November 2013; c 1872.]
We all know the truth of his words, but we also know that inadequate access to respite care is just one of the many difficulties that are faced by young people who have severe disabilities and life-limiting conditions as they move from children’s to adult services. Not the least of those difficulties are the barriers to accessing suitable facilities due to local authority funding policies, because respite care for young people with high levels of need is expensive to provide.
The issue of suitable respite provision for young adults has, of course, been brought into sharp focus by the decision of CHAS to phase out its service for young adults over the age of 21. If new provision is to be in place before that 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 the small number of people involved in each council area, it is clear that dedicated local facilities would be impossible to finance and sustain, and a national solution would require co-operation and complex negotiations over access and finance. I hope that 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, so a range of person-centred options might well be what is needed for the disparate population who need appropriate respite provision.
As discussed by Mark Hazelwood, who is the chief executive of the Scottish Partnership for Palliative Care, there might be differences in preference as well as in need. For example, there is a clear choice between having respite provision at a dedicated centre and being supported to access a mainstream holiday facility. The latter option brings to my mind once again the excellent provision at Crathie Holidays in upper Deeside in my region, where there are excellent facilities to cater for people who have a range of minor or serious disabilities, as well as for able-bodied people who are looking to have a relaxing holiday in a beautiful part of the world.
The current debate is needed only 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 hope that the Government will accept that that has to be a partnership effort, and that it will bring together stakeholders—including the young people themselves—from right across Scotland to thrash out the difficulties and develop the solutions that are required to deal with a growing problem that is only going to get worse if action is not taken soon.
I commend Jackie Baillie, Robert Watson and all those who have worked hard to raise the profile of this urgent need, and I hope that it will not be too long before they achieve the results that they are seeking.
In view of the number of members who wish to speak in the debate, I am minded to accept a motion without notice to extend the time for debate by up to 30 minutes.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Jackie Baillie.]
Motion agreed to.
18:18
I would like to join others in congratulating 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 pay tribute in particular to Robert Watson and to Kyle Kelly and the other young people who are involved in the What About Us? campaign.
I was moved by Robert Watson’s evidence to the Public Petitions Committee. He told members something of what respite care means to him, saying:
“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.”—[Official Report, Public Petitions Committee, 26 November 2013; c 1871.]
Being able to do these things when we want is something that the vast majority of us take for granted, but they are not things that people with muscular dystrophy can do independently. Little things like that make us step back and think how important such considerations are—they are things that I do not think about enough, and we have to consider them very seriously.
It is not just young people for whom access to quality respite care matters; it also matters to their families, many of whom are full-time carers. Like other members, I have heard first-hand accounts from parents about the stress that caring for their grown-up children can cause, and about the importance to everyone of getting a break. The Muscular Dystrophy Campaign found that 93 per cent of relevant people said that the withdrawal of respite services in their area would have a “terrible” impact on their lives.
The reasons behind the situation that is the subject of this debate—the absence of suitable hospice and respite care—are, in some ways, good reasons, as improved healthcare means that more and more people with life-limiting conditions are living much longer than was ever previously envisaged. However, planning how they and their families will be able to get the breaks that they need has not kept up with that. Instead, the available respite care is often targeted at children or at older people, and not at the people for whom it is appropriate to spend their break with young men or women. Our job in Parliament is to help to ensure that the young people concerned have access to the facilities and resources that will allow them to live life to the fullest possible extent. That has to mean age-appropriate respite care.
Rachel house in Kinross, in my region, is one of the CHAS 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 families who are supported there. I question, however, whether it should always fall to charities to provide the essentials. CHAS currently has to raise more than £9 million each year to provide its hospice services, on which more than 300 families across Scotland depend.
The Minister for Public Health will know that I have been, and continue to be, critical of health services in my area. Health boards have a crucial role to play in addressing the problem. This evening, I will match the charm and persuasive skills of Jackie Baillie and Jim Eadie: I ask nicely whether the minister could say in his winding-up speech what discussions he has had with health boards and other stakeholders in seeking to find a solution to the situation. Secondly, could he share with us the Government’s thinking on what suitable alternative provision could be established?
18:22
Like other members, I congratulate Jackie Baillie on securing the debate. As we have heard from speeches across the chamber so far, the subject 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 central Government, local government and the NHS to come together and do the right thing. More than anything else, in responding to the challenge before them, they must listen to the views of the young people at the very centre of the situation. Respite and hospice provision must be shaped to meet the needs of those who require it.
This is not an easy subject. The anticipation of lives being cut tragically short is, on one level, a cause for sadness, yet the fact that we are required to address the situation also offers hope. The reason why we are having to consider appropriate hospice and respite care for young disabled adults is that many more such youngsters are living longer into adulthood. As we have heard, those with Duchenne muscular dystrophy can live into their 20s, 30s or even 40s. It is utterly inappropriate that young men with that condition face respite provision that effectively sticks them in an old folks home environment. Just as catering for young adults in the CHAS-type setting does not really meet their needs, providing respite in traditional adult settings is not what is needed, either.
Like other members participating in the debate, I attended the event in the Parliament back in June that was sponsored by Jackson Carlaw and hosted by Action Duchenne and which highlighted the needs of young adults. It was a moving experience to listen to Robert Watson articulate the shortcomings in provision and identify what is needed. As he put it, respite is as close to a holiday—a break from the usual routine and the 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 to 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 it should give them the chance to recharge their batteries—something that they will do only if they are confident that their loved one is somewhere that they will be able to enjoy fully.
Five calls to action are contained in the Muscular Dystrophy Campaign report, “Give us a Break”. Reading through them before the debate, I found myself nodding my head in agreement with each and every one of them.
I conclude by paying tribute, as Jim Eadie did, to John Miller, advocacy officer for Action Duchenne. As many members know, John is a tireless campaigner for Action Duchenne. He helped to facilitate the meeting in the Parliament in June, and members will not be surprised to learn that he has been active on social media in encouraging attendance at tonight’s debate. He is a remarkable man—a force of nature—who has done incredible things to raise awareness of Duchenne muscular dystrophy. His is the phone call or email that MSPs know there is no avoiding, because he will track them down eventually. As a whip in the Parliament, I wish that, in my encouraging or imploring of back benchers, I was half as effective as he is.
In all seriousness, important matters such as the one that we are considering require people such as John Miller campaigning on their behalf. I genuinely thank him, as well as those behind the Muscular Dystrophy Campaign and the What About Us? campaign for shining a light on the present situation. I look forward to hearing what the minister has to say, especially given the way in which he has been buttered up all evening.
18:25
As a member of the cross-party group on palliative care, I am pleased to be able to take part in this debate, and I thank my colleague Jackie Baillie for bringing the issue to the chamber’s attention.
As one of the last members to contribute to the debate, I am sure that I will repeat many of the key points that have already been made, but I wanted to add my voice to the voices of those who are calling for a solution to the horrendous problem that is being experienced by young people who seek palliative care when they transition from child to adult services.
As someone who has visited Robin house and Rachel house, I know about the tremendous work that CHAS does in supporting not only the young people who require its services from the very first stages to the very last stages of their lives, but their friends and family. Whether it takes the form of providing respite care, at-home care, spiritual care or end-of-life care, it is a vital service and one that many people have benefited from over the past 21 years.
As others have mentioned, CHAS currently supports 41 young people over the age of 21 and their families. Those 41 families and young people would not get the support that they require if the charity decided that it had to remove the funding now. Where would those 41 young people go? Who would care for them in the ways that they require? Who would support them in the ways that CHAS does at the moment? Would they turn to their health board, their local authority or another charity, or would they, as is often presumed, turn to another hospice?
We all know that current hospice provision in Scotland does not meet the demand from patients who require the service. I have had family members who have been fortunate to secure a bed at St Andrew’s Hospice in Airdrie at their time of need. I know at first hand how amazing the staff at that hospice are. They go out of their way not only to support our loved one, but to make sure that we have the support that we need to make it through the day. I know that that hospice would love to provide support to all those who require it, but it just does not have the capacity to do so. It does not have enough beds to support the demand for its services, and I am sure that it is not the only hospice in Scotland that faces that problem.
That is the current situation but, following CHAS’s understandable decision to introduce its transition policy, hospices such as St Andrew’s will be required to help people who are currently helped by CHAS. That would mean helping young people—people of my age and younger—in a hospice that is not fit for their needs or the needs of their family. Of course, if a bed could not be found for someone, they would have to turn to their health board or local authority. Who will fund that? Who is going to make sure that such services would meet all the needs of the young person and their family in the way that CHAS does at the moment?
Members will know that I lodged a number of amendments to the Children and Young People (Scotland) Bill in relation to transition services. Those amendments related primarily to disabled young people and the issues that they experience in their day-to-day lives. Their main aim 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 the time. I am sure that the measures that the amendments would have added to the bill would have made the transition situation much better for disabled young people and would have played a part in addressing the concerns that many people have in relation to palliative care.
When I wrote this 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 who needed them?” The answer was a resounding no, so I will not ask another family or young person to do what I would not do. I urge the minister to take on board the requests that have been made in tonight’s debate, to listen to the requests of Robert Watson and to change the way in which we look at palliative care provision in Scotland for good.
18:29
As Graeme Dey has suggested, we spend a lot of time talking about important issues such as the economy; indeed, we have just had two and a bit years of that. However, although such matters are important, we must never lose sight of the kind of society that we might wish to build—one that would, I believe, continue to be founded on Scottish care, compassion and support. I welcome the debate, because it brings all that home.
My name is Charles, but I am better known, sometimes regrettably but certainly historically—even hysterically—as Chic. I am also known to some as Chas, although that name has a greater connotation as the acronym for the Children’s Hospice Association Scotland.
After I came back from Europe in the mid-1990s, I lived in Milnathort and was occasionally able to visit Rachel house in Kinross, and those visits put my focus on increased business turnover and pristine balance sheets in its true perspective. Those visits have never left me; they are indelibly etched into my brain, even my soul. Indeed, in his emotional and eloquent speech, Jackson Carlaw indicated how much such occasions can affect us.
Occasionally—and too infrequently—such thoughts come back to the surface. As deputy convener of the Public Petitions Committee, I was privileged to be present at the meeting at which the committee was challenged by an excellent petition that had been brought by Robert Watson on behalf of the CHAS young adult council. The petition drew on the experience of adequate provision of respite care as essential in minimising the effects of illness and disability and thereby improving the quality of life for those with disabilities. However, as Mr Watson pointed out in his presentation, for young people over the age of 18, there might well be very little suitable respite provision—the services are already restricted to those under 21—and, consequently, the people who look after those with such disabilities do not get their intended and needed break.
The “problem”—if it is indeed a problem; I put that word in inverted commas—of creating suitable respite services for young disabled adults with life-limiting conditions arises partly because of medical advances. However, medical problems do not come with birthday cards or timetables. A disease that comes on at an early age will transit with very young children as they grow into young adulthood; they cannot tell their disease to stop when they reach the age of 21. Respite care that goes in tandem with clinical care for young adults and their carers might be that bit more expensive, but all we need is a bit of ingenuity and will in all NHS boards and local authorities. After all, respite care gives carers a break and reduces the health dependencies on the NHS that we know they have.
In a letter that the Public Petitions Committee received, an organisation that shall remain nameless said:
“The setting up of such a”
respite
“service might have knock on effects to existing respite services and make them unviable.”
It then went on to talk about the expense, but there was no mention of sociability or the frame or frames of reference of those young adults with lifetime disabilities, or, indeed, the carers associated with them.
It is estimated that between 2007-08 and 2012-13 the number of respite weeks provided in Scotland increased by 12,650, or 7.3 per cent. Although that is commendable, it is hoped that effective provision of more respite care will be generated through the integration of health and social care. Nevertheless, the sword of Damocles still hangs over the heads of those young people with life-limiting conditions.
Finally, I believe that local authorities and NHS boards have a responsibility to look at these services in the round and consider what I believe to be the advantageous benefits—including, yes, the cost benefits—of, and the need and demand for, substantial respite care and services for those young adults.
Thank you very much. I now call the highly regarded Michael Matheson to respond to the debate.
18:34
Thank you, Presiding Officer.
I congratulate Jackie Baillie on securing time for this important debate. A number of contributions have been very interesting and thoughtful. I offer my thanks to Robert Watson for submitting his petition to Parliament last November, and for the work in the Muscular Dystrophy Campaign’s “Give us a break—Hospice and respite care for young disabled adults in Scotland” report and Action Duchenne’s “What About Us?” report.
I fully recognise the important value that respite breaks offer to young people in particular, not just in providing a break for the people who regularly care for them, but in giving those young people an opportunity to socialise and mix with individuals of their own age group. We need to ensure that that can take place in an age-appropriate setting.
I will digress slightly. Providing that type of respite for young disabled people across the country is not a new challenge. There has been a long-standing challenge in providing good, high-quality respite for young people with disabilities in a range of settings. For example, Red Cross house in Inverness traditionally had a very good reputation for providing that for individuals in the Highlands. I had experience of that in my previous role. There was also the Sue Ryder centre in West Lothian, which provided specialist care for young people with conditions such as multiple sclerosis for whom it was 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.
I recognise in particular the important role that respite can provide to those with life-limiting conditions, such as muscular dystrophy. Jim Eadie highlighted the important value that such respite provision can have, as did Jackson Carlaw. It was made very clear how important young people feel that that can be. That is why it is also about ensuring that we deliver respite to young people in the right way. It must be person centred, safe and effective for them. Achieving that is not simply a case of the Government deciding what should happen; it is about working with the right stakeholders. That requires concerted effort.
Several members, including Nanette Milne and Chic Brodie, mentioned the opportunity that comes from the integration of health and social care through joint commissioning between local authorities and health boards and how they deliver services to ensure that they reflect much more the needs of their community. Some of the joint work that will be taken forward will give us an opportunity to achieve greater joined-up working in the area. Another option is self-directed support. That gives people the opportunity to take forward appropriate care in a manner that they feel is best suited to them.
I return to the important value that many people have found in CHAS. I, too, have visited CHAS and I acknowledge that it is not a mournful place in any way, as Jackie Baillie said. It is a cheery and very empowering place. It is empowering for those who use its facilities and it is an extremely rewarding place for both individuals and families, because of the fantastic care that it provides.
I understand and recognise the challenges that we now face as healthcare provision improves through the greater provision of, or improvements in, medication and health technology. That provides us with a challenge with those who have life-limiting conditions and are now living longer. That is a good challenge for us to have, but I recognise that we need to face up to it and address it much more effectively.
I am sure that no member would wish to give the impression that, since the petition that I mentioned was submitted, the Scottish Government has not undertaken any work in the area to try to address the matter. The Cabinet Secretary for Health and Wellbeing, Alex Neil, stated in his letter to the Health and Sport Committee and a letter to Jackie Baillie that a number of actions are being taken. For example, officials have been gathering information from our carer information strategy leads on NHS boards and our local authorities. That information indicates that pockets of very good work are being undertaken, but it also highlights other areas in which there is a lack of consistency across the country. There are deficiencies as well.
We have been working with COSLA and we are gathering information in three key areas. We are advanced in the process of establishing Scottish data to determine the scale of the issue, so that we properly understand the numbers. The numbers are small, but we need to understand them to move forward. We are also mapping the bed capacity and the quality of existing services. There is CHAS, but there are other options. We need to look at the different models and map them effectively. The other important work that we are undertaking is analysis of the economic evidence relating to running a bespoke service. We are taking forward a range of work.
Members have made comments and raised issues tonight in what seems to be frustration with what may appear to be a lack of progress in action on this issue. In the desire to be as helpful as I can, I undertake to convene a meeting with the interested parties to look at what more we can do to move the issue to the next stage. Where that will take us will depend on the evidence and information that we have gathered, but I hope that members will be assured that the cabinet secretary and I are interested in this matter. If it offers members—and those who are listening in the public gallery—further assurance, I will convene a meeting to look at where we are and what further steps are needed to drive the issue forward.
It is in everyone’s interests to ensure that the young disabled people in our communities receive the best support and have the opportunity to lead as fulfilling and as full a life as possible.
Meeting closed at 18:42.Previous
Decision Time