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Respite Services (Young Disabled Adults) (PE1499)
The fourth item on the agenda today is consideration of PE1499 by Robert Watson on creating suitable respite facilities to support younger disabled adults with life-shortening conditions. Members can see from paper HS/S4/16/8/3 that the committee has considered the petition as part of its palliative care inquiry. We have also considered respite care provision for people who are transitioning from children’s to adults’ hospice and respite services.
Those issues were discussed at last week’s evidence session with the Cabinet Secretary for Health, Wellbeing and Sport. Members will recall that the cabinet secretary highlighted the work that is being done by the Children’s Hospice Association Scotland on determining how young adults are supported, and the respite care pilot work that is being undertaken at Leuchie house.
Given that it appears that action is under way to address the petitioner’s concerns, I am minded to suggest that we close the petition. Of course, it would remain open to the petitioner to lodge another petition if, in the fullness of time, it transpires that the work that is currently under way does not improve services. I seek members’ views.
Can we ask for the petitioner’s opinion on what has been suggested and on the on-going work? We are obviously coming to the end of the parliamentary session, so at some point we will have to close the petition. It will be for the petitioner to come back with another petition in the new session of Parliament if they still have concerns. This might be a good opportunity to get the petitioner’s views and to feed them in to the Government as work progresses, given that there will be a bit of a gap.
Are you suggesting that we get the petitioner’s views now about the pilot programme?
Yes—and about what he thinks might need to be added to it. I know that respite for young people—rather than for children, I think—is a real issue not only in respect of palliative care but more widely.
We can do that. We have written to the petitioner to outline our position. What response did we get?
The committee has just told the petitioner that the committee’s work is under way.
It would be good to get the petitioner’s views, feed them in and then close the petition, or close the petition, get his views and feed them in, if that is appropriate. I know that we have to close the petition at some point.
If the committee feels that we should, we can tell the petitioner what we are likely to do and ask whether he has any views on the pilot. We can then bring the petition back before the committee.
The work that is under way now should be given time to bed in and to resolve the situation. If the petitioner wishes to monitor the progress of that work, he can lodge another petition if he is not satisfied that work that he feels is required is being done. However, I think that such a petition would look different from the current one, because I am pretty sure that the work that is being undertaken by CHAS will resolve many of the petitioner’s concerns.
If I recall correctly what was said, last week when I asked the cabinet secretary and her officials about the on-going work that the Government is doing with Leuchie house and Marie Curie in Glasgow, we were given timescales for reporting back on that work. Perhaps in closing the petition, it might be useful for us to send that reference to the petitioner.
I am interested in the petitioner’s comment that
“The danger may be that ‘respite care’ is lost in this focus—and that is the primary objective of my petition.”
I am not entirely clear about this, because I have not been a member of the committee during all the time in which the petition has been dealt with, but the petitioner seems to be expressing concern that we have focused only on palliative care, whereas I presume that respite care could apply to a much wider range of people.
In NHS Lothian at the moment there is an issue in that respite care has been taken away from people who used to use a unit called the Lanfine unit; I have a constituent who has lost his respite care at that unit. NHS Lothian would argue that it has remodelled the service, but the fact of the matter is that some people have lost out. That is the kind of concern that is coming to me at the moment.
10:15Although I have not been closely involved with the petition, I think that there is probably no option but to close it, at this stage. However, it may be that we have not quite captured the breadth of the concern of the petitioner by having focused on palliative care rather than on the broader respite issue that is being raised.
My recollection of the evidence that we heard from the cabinet secretary and officials last week is that it was also about respite care, and they gave us timescales for reporting on respite care pilots.
I want to make the point that children’s hospice care is very different from adult hospice care. Children’s hospice care is about respite, and the fact is that young people are growing up in the children’s hospice movement, often from birth until adulthood, when they leave it. Respite support is very important to them, not just so that their families have respite, but for the young people socially, so that they can do what they want to do without being dependent on their families.
Those young people come out into an adult system that is totally different. Palliative care is very much for the end of life rather than for life-limiting conditions.
There are concerns. I would not like to be seen to be just ticking the boxes and saying that that is it sorted. There will be on-going issues, which is why I am keen to get the petitioner’s views and to feed them into the process.
We agreed that we would deal with this petition as we took evidence on palliative and end-of-life care, Rhoda, but you seem to be suggesting something different at this point. Although the focus has been on palliative care, Marie Curie and CHAS are directly involved. That was the process that we were following.
The issue is what a committee is expected to do with a petition. As a committee, we agreed that we would deal with this petition in our general evidence on palliative care. We suggested that to the petitioner and let him know that we would do that. The issues that were raised in the petition were raised directly with the cabinet secretary. CHAS is directly involved; Marie Curie is directly involved.
I am not objecting to Rhoda Grant’s proposal, but I would not want to give the petitioner a false expectation that we are going to take another route. Our approach has been as consistent as possible. We informed the petitioner of what we were going to do and that our work would focus on palliative care. The people who are directly involved are able to deal through the pilot with the issues that are being raised now.
Other than departing from the parameters that we have been following, I do not know what we can do. Rhoda Grant is suggesting that the issue is not just palliative care but lifelong conditions, but that has not been our approach. We could ask for the indulgence perhaps to leave the petition lying for a couple of weeks, but we need to know what we will discuss in the next couple of weeks and how the petitioner will respond to what we do with the petition. I just do not know where we are going.
The issue is not lifelong conditions; it is life-limiting conditions. We have, because of advances in medicine, children with conditions that would not, in the past, have allowed them to reach adulthood, but who are now living beyond childhood. That is great, but there is a gap in that the support that they had in their youth they will not have going forward.
I know that we cannot keep the petition open, and we have agreed to deal with it as we have discussed. I know that the Government is trying to do something about the situation. I am simply suggesting that we seek the petitioner’s view and feed it in to the Government—that is important when something is being piloted—rather than keeping the petition open.
I agree with Rhoda Grant. I first heard about the on-going situation with CHAS at the cross-party group on muscular dystrophy, which was attended by people from Action Duchenne. People with Duchenne muscular dystrophy are now surviving into adulthood, and it is exactly right to highlight—as Rhoda Grant has—that such people may need respite care. Ultimately, they may need palliative care too, but respite was quite a significant element of what was discussed with Action Duchenne at the cross-party group. If I remember rightly, the petition arose from one of those people.
The petition has come to us and we have progressed it. We have communicated with the petitioner and let them know what we are doing. I am focusing on how we have dealt with the petition, and I am struggling to see what more we can do.
One of the recommendations in the committee’s report states:
“The Committee welcomes the joint work that the Scottish Government and CHAS are currently undertaking to look at how respite services for young adults can be improved and increased.”
CHAS commented on the importance of respite in its report. The petitioners’ concerns have been addressed by the committee in its report and recommendations, and in its evidence taking. I do not know what more we can do. We have had a response from the cabinet secretary and there is work going on, with pilots taking place. The issue is under consideration, and people can make representations to the Government on the matter.
I agree absolutely with what you are saying, convener, and I was greatly reassured by what the cabinet secretary said. I wonder whether it would help, given that we will discuss our legacy paper later in the meeting, to agree to let the petitioner know that the committee is looking forward to the outcome of the work that is taking place on the issue in general, including respite. We can ask our successor committee to revisit or monitor the issue at an appropriate point in the future. That may reassure Rhoda Grant and Nanette Milne, and the petitioner.
The committee has done a good job on this.
We should close the petition. There is no point in keeping it open, because we have done everything that was asked of us. I quite like Mike MacKenzie’s suggestion that we put a small paragraph on the matter in our legacy paper.
Agreed.
Does that help?
Yes. If the petitioner wants to submit comments to the Scottish Government, they can do so.
Or to the committee.
As was agreed at our previous meeting, we now move into private session.
10:23 Meeting continued in private until 11:23.Previous
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