Public Petitions Committee

Meeting date: Tuesday, November 26, 2013

Official Report 514KB pdf

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New Petition

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Respite Services (Young Disabled Adults) (PE1499)

The third new petition is PE1499, by Robert Watson on behalf of the What About Us? campaign group, on creating suitable respite services for younger disabled adults with life-limiting conditions. Members have a note by the clerk, the SPICe briefing and the petition. Jackie Baillie is interested in the petition, so she remains with us.

I welcome to the meeting the petitioner, Robert Watson, and Kyle Kelly. I invite Mr Watson to make a short presentation for a maximum of five minutes, to set the context of the petition. I will then ask a few questions and my colleagues will ask further questions.

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, Kyle Kelly and our families who care for us face following the decision by the Children’s Hospice Association Scotland to withdraw its services for people who are aged 21 and over, combined with the fact that there are no suitable adult respite facilities for our age group that we can move on to. 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.

For me—I am sure that Kyle Kelly and most other young adults in the same situation would agree—the benefit of a respite break is that it is a chance for me to have a break away from my parents and from the usual routine. 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.

A respite break is also a chance to socialise with other people of my age who have the same or similar conditions, so we can relate to each other. Because we live far from each other, I do not get the chance to see those friends outside respite breaks. A break helps us to get away from the isolation that we can feel from being at home most of the time. For some of us, it is our only chance to socialise. Like any other 28-year-old man, I just want to be out socialising and feeling independent. A respite break gives me the opportunity to do that.

Initially, the issue is affecting about 100 young adults and their families. However, as the years go by and more young people reach the cut-off age of 21—and who knows whether that might go down further, to 18, in future years?—the number of people who will need age-appropriate adult respite services will only keep increasing. It would be better to do something about the situation before things become too desperate.

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. We are asking, “What about us?”, as we seem to be a forgotten group that is stuck in the middle. With advances in medical care and support, many people with severe physical disabilities such as Duchenne muscular dystrophy are now living significantly longer, but no one seems to have been prepared for that.

It seems that, as life expectancy increases, the support that is available to us decreases. The adult respite situation is another example of that strange paradox. I have Duchenne muscular dystrophy and, because it is a progressive condition, my health will gradually get worse as I get older. It must be remembered that my parents, who carry out the vast majority of my care, are also getting older, which means that their health will get worse too.

The average weekday for my dad begins at 6.15am and, by the time my parents have put me to bed, my dad sometimes does not get to bed until midnight. My parents sometimes do not even get a proper night’s sleep if I need help during the night. My mum also has Duchenne, albeit a milder form, so sometimes my dad is caring for two people. Both my parents have a number of health problems of their own—my mum also has diabetes, and my dad has a pacemaker—so respite breaks are vital for them to be able to relax and spend some time together as a couple, and recharge their batteries.

It is in the Government’s best interest to provide funding for suitable adult respite services because those breaks 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.

I hope that I have shown you all just how important it is for so many people that the Scottish Government does something about the lack of adult respite services and facilities. We need quality respite facilities to be created for younger adults who are living with severe physical disabilities in Scotland. I hope that, with your help, Scotland can lead the way in creating those much-needed services.

Thank you very much for coming, Mr Watson. I also thank Kyle Kelly—please let me know if you wish to speak at any time, Kyle, because we want to include you in our discussion. I know that it was a difficult journey for you today; I do not know whether it is the first time that you have given evidence before a Scottish Parliament committee.

Yes, it is.

We do not have a certificate for you today, but we perhaps should have.

Just to ensure that I understand you correctly, is the problem a combination of the lack of facilities for younger adults such as you and a lack of funding, or is it simply that there are not facilities in Scotland?

We did a lot of research, and it seems that there is not really anywhere suitable. The only place that I found that seemed to be suitable was Leuchie house out in North Berwick, but it charges £1,000 just for a four-night stay, which is just not affordable for the average person. If it was cheaper, or if there was more funding available, that would be an option.

Have you had a look at other examples in other countries, such as England, Wales and Northern Ireland, or elsewhere in Europe, to find examples of best practice?

Not in Europe, but we have looked around the UK, and the lack of such facilities seems to be a UK-wide problem. There are a lot of children’s respite services but, once someone reaches 18 or 21, they are not allowed to go anywhere. There seems to be nowhere to go to address that gap in the middle.

So there is a gap at that stage. Children have some coverage, but there is a gap in young adult provision throughout Scotland.

Yes—from age 21 to about 40 or 45. It is hard to define the upper age limit, but the early 40s would be about right. There seem to be services for people in their 50s and 60s with terminal conditions such as cancer, but nothing in the middle.

It may be that some establishments are suitable for you, but the problem is that they do not cater for the age group with whom you want to socialise. Are you saying that the sociability aspect is very important? Do you want people who are the same age as you to be there?

There are places out there for younger adults with learning difficulties, but nothing that is suitable for physical disabilities. Those are two very different types of disabilities.

Thank you for that. I will bring in some of my colleagues and, once the committee has concluded its questioning, I will bring in Jackie Baillie. Chic Brodie will go first.

Good morning, Robert and Kyle. Forgive my lack of knowledge about how widespread the problem is. How many people do you think fall into this category in Scotland?

The 100 families that I mentioned are just the families that are affected by CHAS’s decision to stop people over 21 from going.

How many are affected by CHAS’s decision?

More than 100 for CHAS alone, but there are a lot of people with different conditions who do not use CHAS’s services.

Do you know how many fall into that category?

I do not have numbers, I am afraid.

I was just trying to understand the scope of the challenge. Presumably, CHAS’s decision is based on finance, or is there any other reason that you are aware of?

You would need to ask CHAS, but I think that it said that demand was increasing because so many children were using its services. I find that I do not get as many stays as I used to, because there are a lot more people going there. Also, because lot of us are much older than the children who are there, I think that they feel that it is not appropriate for us to be there.

What Robert Watson has said is how I feel too.

Robert Watson mentioned a figure of £1,000 for four-day residential provision, and I can see from your submission that the Minister for Public Health seemed to have become confused between respite for yourself and for people with your condition and respite for your parents. You indicated that you were pushing for respite for your parents to go away on a holiday, but would that mean that you would need 24/7 care during that respite period for your parents?

It would. I cannot speak for other families, but I know that my mum and dad would rather be at home and have time to themselves while I went away somewhere.

I have done a rough calculation based on 24/7 care, which would cost about £1,500 for seven days. That would almost equate to a respite break for yourself somewhere with specialist care provision. Who pays for the cover when your parents have their respite? Is it the local authority that steps in to provide the funding for a carer in the periods when they are not there?

I guess that they should, but they do not give anybody enough funding for anything like that. The only care that we get is seven mornings a week for two hours each day to get me up, and an hour twice a week at night for showers. Kyle Kelly’s situation might be different.

During the week, I get carers that come in for an hour or so in the morning to get me up and ready, and 45 minutes at night for showers.

Is that all?

Yes, that is all.

That raises the wider issue of the amount of time and funding that is allocated to provide appropriate care for individuals. If the local authority is picking up the cost for individuals who need 24/7 care, the money should be there to provide that, but I hope that by taking the petition forward we will be able to look at some of the issues that arise.

I thank Robert Watson and Kyle Kelly for coming along today.

Recently I had the pleasure of visiting Robin house children’s hospice with Jackie Baillie in Balloch, in her area. What a time that was—it was wonderful. While we were visiting a lot of younger people were there. I have constituents who have been to Leuchie house and did not really enjoy it, because they were younger than the older age group that was receiving respite there. As Robert Watson said, there is a gap in the respite that is available for teenagers and younger adults. That is a huge concern, because one of the main parts of respite is about getting together to socialise with your friends.

I will come back in at the end on something else that I want to ask.

11:45

As no other members want to speak, I will bring in Jackie Baillie.

Thank you, convener. Evidently I was caught in the same traffic jam as the witnesses, because I arrived moments before them.

It is not just me who supports the petition; my colleague Jim Eadie, who cannot be here today, is equally supportive of it. The petition commands cross-party support.

I suppose that the problem could be described as one of success. As a result of modern medicine, young people with particular conditions are doing extremely well. That is great, but it means that CHAS, which is a bespoke children’s service, is plugging a gap. The reality is that a bespoke service for young adults is needed as well.

A lot of the respite provision that I have seen takes place in care homes in which there are older people with a variety of problems, which is—frankly—not appropriate. There should absolutely be respite for parents, carers and all that, but I suspect that the request is that there should be respite care in which individuals can come together. We need that kind of bespoke provision.

We could argue about whether we need one centre or two. I look at CHAS as a model and say that we could learn and copy much from it. A funding model already exists in which a lead health board negotiates with others for children going to CHAS services. COSLA has agreed a package in which there is negotiation with individual local authorities if a child is going to CHAS services. That model exists and it should not be beyond us to copy it.

Robert Watson, you are pushing it at 28; you are not a young adult—you are well past it. However, for young adults to have their own place that is not full of kids or older people is very important for them, their carers and their families.

The request is not just to the Scottish Government and is not just about public money, although that matters. It is about acknowledging that such facilities are required. People have raised funds, undertaken campaigns and hugely welcomed Government support—just a small amount goes a long way. It is not just a question of capital; the revenue package is also there. We just need to transport the model on.

I hope that the committee will be extremely supportive of the petition, which commands cross-party support.

Do members have any final comments?

I have done a quick calculation. Across the 32 local authorities, 10 days of respite would cost £30,000, which is not huge in the scale of things.

I ask Robert Watson and Kyle Kelly whether, if we had the facilities, there would be enough skilled people to handle the situation. We have care capabilities in CHAS now, but you have talked about the volume of people beyond a certain age limit. Do we have the capability or resource to deal with that?

I think so, judging by the care that I have had over the years at Rachel house. Based on that, I would say yes but, without experiencing other places, it is difficult for me to say what care is like on a wider scale.

Basically, I think the same. It is hard to talk about other carers if you have not experienced them. If someone has had only the carers that we have in CHAS now, they have not had any other experience.

There seem to be a lot of care providers, but they are not necessarily all of the same standard. I have had lots of agencies over the years and I have had some bad experiences, so I know both sides.

I think that Anne McTaggart has a final point before we go to summation.

My point is really in summation. We should ask the relevant parliamentary cross-party groups for their advice on the petition.

For the benefit of Robert Watson and Kyle Kelly, I state that we will now consider what the next steps should be for the committee. We heard your excellent evidence and you answered the questions well. We will now consider the next stage. It is clear that we want to continue your petition, and some suggestions have been made. Can I have suggestions from committee members on the next steps?

I support the recommendation that we write to the Scottish Government, the Scottish Partnership for Palliative Care and the Health and Social Care Alliance Scotland. I thank Jackie Baillie for her views, and I add that the idea of a debate in the Parliament is not a bad one.

A plenary debate would be a matter for the Conveners Group but, through a bit of foresight, I have a bid in for a debate, probably in March or April. I made the bid without knowing what subject we would discuss. If the committee agrees to debating respite care, we have a card to play, which is fortuitous.

I agree that we should write to the Scottish Government, the Scottish Partnership for Palliative Care and the Health and Social Care Alliance Scotland, but I suggest that we also write to a couple of local authorities to find out their role in provision. Some of the funding comes from local authorities, so it would be useful to get their views.

On the basis of Jackie Baillie’s comments, I suggest that we also write to NHS Scotland to get an overview of what health boards should be doing to ensure that there is provision. Jackie Baillie is right. A lot of the funding for such provision has been charitable funding but, given the care and attention that are needed for individuals who want respite care away from their parents and other family members, it would be useful for us to look at NHS Scotland working in conjunction with local authorities to consider what can be done to set up provision for young people—I would like to refer to young people up to the age of 45, but I am well beyond that. However, if people still see themselves as being young at 45, good on them.

The presentation was excellent and Robert Watson and Kyle Kelly put their points over well. Given what we have heard from them, I am struck by the need to debate the issue in the chamber. It is curious that there does not seem to be much mention of charities that deal with muscular dystrophy, although the Muscular Dystrophy Campaign is mentioned. It might be an idea for us to write to it to find out how it would feel about getting involved in new facilities in Scotland.

The Muscular Dystrophy Campaign and Action Duchenne are both aware of the campaign; I have been in regular contact with them. They are both keen to work with the Government to try to solve the issue.

That is good to hear. If we could write to those organisations and get official responses, that would be good.

Yes. As there are no other contributions, I say to Robert Watson and Kyle Kelly that we are enthusiastic about your petition. You have identified a huge gap on which we can do a lot more work with the Scottish Government. We will write to all the organisations that members mentioned, and it will probably be worth while for us to write to COSLA as well.

We have also talked about a plenary debate. That means that we will bid for some time in the chamber for a debate by the Parliament as a whole. If we are successful, the debate will be led by us and all the other parties will come along. For example, the health spokespeople will come along and speak. It would be good if we could get you, your families and friends and others along to watch the debate from the gallery.

We have to bid for such a debate but, as I said, I have already made a general bid for time, which I hope that we can convert into a bid for a debate on this subject. You can leave us to work out the technicalities, but we are on the case. It will probably be April or May before that comes through, but we will keep you up to date.

I thank Jackie Baillie for coming along, and I thank Robert Watson and Kyle Kelly for coming along and giving evidence for the first time to the Parliament. We hope to see you back soon, particularly when we have the debate in Parliament.

I suspend the meeting to allow our witnesses to leave.

11:55 Meeting suspended.

11:57 On resuming—