Hospice and Respite Facilities for Young Disabled Adults

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.

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.

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.”

Will the member take a tiny intervention?

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 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.

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.

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?

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.

Thank you very much. I now call the highly regarded Michael Matheson to respond to the debate.