We move on to agenda item 2, which is an opportunity for the members who attended the fact-finding visit to Glasgow and the meeting with members of the Marie Curie expert voices group for Scotland to report back. Bob, do you have any comments from the group that you sat with in Glasgow?
Yes. I sat with a group of younger carers—that term does not necessarily mean carers of the age that is specified in the bill—and a couple of things came through quite strongly to me. First, the carer support that they feel that they need is not necessarily support in their caring duties, because it is not just their duty to care. It is also the duty of social services and the wider support agencies. Some of the support that they need is support to get on with their lives so that they are not seen only as being in a caring role. That could be support to facilitate access to college, university, training or work, or to enable them to socialise with their peer group. They feel that they also need that support as part of any carer plan that might emerge.
There was also recognition that schools are not always as attentive as they could be to the carer issues of young people who attend them. That is of some concern. The support that other agencies could provide, whether within the school or elsewhere, is important. Also, as we would expect, the issue of transitions came up quite strongly.
Those were the initial points that I picked up. The thing that I was most struck by, to repeat myself, was that young carers sometimes want support to get on with their lives. One person talked about respite care and told me that what they were looking for was to ensure that they could get a couple of hours to go out in the evening once a week and socialise with friends. That would be respite for them, knowing that they could do that and not have to worry about the loved one that they routinely have to care for. Often, the asks are not huge. They are specific, focused and unique to their lives and family circumstances.
It was pretty humbling to speak to the young carers. Their asks are really important, and they are not always huge. We just have to focus on and drill down into what is most important to the person. After all, they just want to be able to get on with their lives as well as performing their caring duties.
Thanks, Bob. Does anyone else wish to comment on their groups?
I had quite a varied group, but what they had in common was that a lot of them were from more rural areas. There were parents who look after their adult children, someone who had cared for a partner but they had passed away, and others who care for elderly parents.
The people in the group raised a number of good points. They were glad about the bill and thought that it would provide a focus on caring, which was good. They also welcomed the change in terminology from references to “carer’s assessment” to references to “adult carer support plan”.
However, they felt that a number of things were missing from the bill, such as emergency planning, carer involvement in admissions to hospital and discharge planning, and what the carer needs as their personal outcome in how they go about living their lives. They also referred to a carer’s ability to say, “I can’t do this any more” and to opt out of caring altogether; they thought that that was missing from the plan in the bill.
They also had concerns about the eligibility criteria and were keen for there to be a national minimum level, which would mean that everybody had equality of support; that was really important to them. They also said that when people were being assessed, it should be about not only how long they had been caring for, but the skill that was involved.
A lot of people in the group were concerned about what they were being asked to do and the level of skill involved. Indeed, they were concerned about being asked to do things that paid carers would not be asked to do. For example, they said that carers on their own were being asked to use ways of lifting and handling that were appropriate for two people to do together, but they were being asked to do that without any expert training or help, or, indeed, equipment. That is an example of the level of help and assessment that they said was required.
People were concerned that the support they receive at present is crisis support rather than on-going preventative support that would allow them to care properly. There was also concern about advice and information services. Many people had been involved in local groups that were set up through the voluntary sector to provide advice and information services, and they were concerned that because provision for such services was part of the bill, local authorities might take the services in-house instead of supporting good practice within communities. That concern is why I raised the issue with the local authorities at last week’s meeting, because it is important that there is expertise within the community.
As I said, the carers were concerned about hospital admissions and discharges, and in that regard felt that they were not being treated as equal partners. They believed that people should be discharged with a care plan, but that the carer’s needs should also be assessed when the cared-for person was being discharged. They felt that an awful lot was put on them; someone said that they felt they were being bullied by being asked whether they loved their partner, when they were being asked to take on a large amount of care. It is really important that carers are valued for the contribution that they make, but they should not be forced into doing it.
The group talked about identifying carers, which is really important. They also talked about short breaks; perhaps we need to think about that issue, given that others have also talked about it and the context seems to be short breaks versus respite care. The group said that they were being asked to work long hours without a break, so perhaps respite care needs to be part of their day to allow them to go about their lives or, indeed, to go to work or whatever. That ability for carers needs to be put into the care plan.
The issue of short breaks is different, because it is about people being able to take a holiday. However, people from the islands pointed out that that sometimes does not work, because by the time they get off the island, they have lost half their week, and they never get their full entitlement. That issue needs to be looked at.
Another issue that was raised was that if the cared-for person was also the carer’s partner, the carer would not necessarily want to have a short break without them. The question then was how to facilitate their care on holiday and find the right accommodation and support to allow both the carer and the cared-for person—or even the whole family—to go away together and enjoy a break. It is a difficult issue, but it has to be considered in the proposals for short breaks and, in a different vein, respite care. The two issues were being confused, and we need to ensure that that does not happen.
The important issue of the right to advocacy was also highlighted, as was the inverse relationship between deprivation and the amount of care that was received. Articulate people who can stand up for themselves get more help and support, whereas people with lower expectations who might not know the systems or who are not quite as articulate are not getting the care that they need. It was felt that it was important to tackle that in looking at support for carers.
Thank you, Rhoda. Does anyone else wish to comment? I note that Dennis Robertson is not here. Colin, did you attend any of the sessions?
Yes, I attended the expert voices group session. Given that it covered a lot of the issues that have already been highlighted, I will be fairly minimalist in my comments.
What came out at the end of the session was that, as one of the attendees commented, we are trying to get a bill that addresses certain obvious difficulties. When a person is diagnosed with a terminal illness and a carer duty is foisted upon someone else, someone somewhere has to take the lead in helping the carer through the bureaucracy of the benefits system, removing the stress of filling in endless forms and making the links between the partners in social care, local authorities and so on and helping them get a handle on how to deal with the fact that they are living with someone who is coming to the end of their life. To cut it down to the basic points that people were making, I think that they wanted help with getting through the bureaucracy and help with the various issues that my colleagues have highlighted.
Thanks very much.
I attended the Glasgow session, which comprised a group representing minority interests and backgrounds. As one would expect, one of the issues that arose was the need to understand and respect the cultures and the community who were being cared for. That context was important and was being looked into.
Other issues that were raised have already been covered, but I note that with regard to work and employment there was an assumption that, if there was a strong family in place, people could do everything. As has been mentioned, there were issues not just with dealing with employers but with self-employment; after all, this is about not just social services, but the work situation, and having a good employer or the ability to work in a flexible way can change a person’s situation and care dramatically.
Following on from that are the cultural aspects with regard to those who provide support and the issue of training for carers to allow them to understand the condition in question and to recognise the line between what they can and cannot do. I think that Rhoda Grant referred to that.
I do not know whether it was mentioned in other groups, but as a committee we have recognised that we are all living longer lives and, as a result, carers are becoming people who need care for themselves: they are carers, but they are also living with conditions that limit their quality of life. That needs to be recognised. In terms of financial support, there were issues around flexibility, respite care and other such things.
11:30Rhoda Grant mentioned that a change in environment can be as good as a break, and that taking someone out of the home environment and creating a holiday environment for the family and those who are close can feel like respite and a break from that situation. However, that does not seem to be recognised. As we discussed this morning, if a carer is looking after someone in a terminal situation, they do not want a break away for a week; rather, they want to be there as often as possible, but they might need a break within that developing situation. Again, that led us into discussions about the importance of assessment and the rapidly changing needs of someone who is caring for someone in a declining situation. People just struggle on and two people could end up in hospital as a result. That is not good for them as human beings and it is certainly not good for the national health service, as we know.
The people in the group had access to support and information, but they value the independent information services. They have some concerns about access to that and the importance of face-to-face information and dealing with people rather than with phones and answering machines. If there is a bit of a crisis developing, or the carer just feels low that day and wants to call on support, they do not want an answering machine and no one getting back to them for two days. As we know, that breakdown in confidence can lead to unplanned hospital admissions. The committee has heard evidence that that can happen.
The carers told me strongly how important it was that they could have confidence in the continuity of services, and in people who they could rely on—people who were valued, trained and could do the job. The assessment process is seen as sometimes being a bit random and ad hoc; if families do not know or understand the rules of engagement, the process can become adversarial and very stressful. Families do not necessarily understand the timetable—if any has been set—and they are anxious that there is no set review process, which is particularly important if someone has a progressive terminal illness.
The other areas that we discussed included identification. There was an anxiety in the group about identifying more carers and why we would do that. I suggested that we were doing that because, if we anticipated someone’s caring role at an earlier stage, we could help them cope, even thought they might not need help at that given point. There was anxiety that, if we started to identify more carers, that would put pressure on the limited resource that exists at present, which would affect members of the group as carers.
There is a point to be made about transition, and how we support the carers who are already identified and who in some cases do not feel that they are supported adequately at all times. How do we reach the unmet need while striking a balance so that we do not put a question mark around the care packages that are already in place? There was a wee debate about that, and we could well understand that people were getting a bit anxious, but there is a point about unmet need. There are carers out there who need to be identified and supported—perhaps at a lower level—-or even just recognised as carers. That is important if we are to manage the situation.
There was quite a long discussion with the groups, but it was very well organised.
I see that Bob Doris wants to come in with a quick point before we finish the session.
My apologies, convener—I also apologise to the young carers I spoke to. I have just consulted my notes, and I see that there are some points that I think the young carers would be surprised that I did not mention earlier, so I will do that briefly.
First, picking up on Rhoda Grant’s point about the lack of communication when the cared-for person is in hospital, a lot of young carers felt that there was no mention in hospital records of who the carer was. Young carers felt that they were being squeezed out of the process. They even suggested having a young carers card that could aid recognition when they were engaging with various public services, so that people knew that they were the carer. They noted that there is already an emergency carers card; the committee has not looked at that but it exists, although it is not universal.
The bill refers to young carers rather than specifically to young adult carers, and there was a feeling among the young carers that, because there is no statutory obligation to provide services specifically for young adult carers, the young carer services and the more generic adult carer services might evolve while young adult carers do not get what they need. There is a need for specific services for that group, and the carers wanted me to put that point on the record.
They also wanted me to put on the record a question about the review process in relation to assessments. If a carer disagrees with the local authority assessment about what a young person’s support plan includes, what recourse do they have, and how independent is that recourse?
I have covered most of the points that the young carers raised. They spoke about their feeling that social services were not particularly good at signposting young people to support services. They thought that the young carer statement could be an opportunity to improve that, but they felt that, quite often, identification as a carer came far too late in the process. They felt that, deliberately or otherwise—I am sure that it is otherwise—social work seemed to focus primarily on the cared-for person and not enough on the carer and their role in the process. However, they were hopeful that the young carer statement could address that. Again, they said that it is about driving change at a local level, not just having words in a piece of legislation.
I offer my apologies to the young carers for not putting those points on the record when I had my first cut at reporting back.
A lot of what the expert voices group said is reflected in what we have discussed, but there is one point that we have not highlighted. One member of the group suggested a named person for carers to be able to contact. The member of the group who raised that point is used to dealing with children’s services and the like: she works in that field, and thought that it would be good to have one person who co-ordinated all the services to whom she could speak. She made a really good point in that regard.
That takes us back to our earlier discussion. The patient, so to speak, may be on a benefit of some kind, but we are moving towards a situation in which a change in that benefit may be due to come into effect. Not everybody knows about the system, and the point about having someone to help carers through the bureaucracy came through strongly from the people we spoke to.
That point was reflected in both the events.
I have spoken to people who attended the Marie Curie expert voices group meeting, which I was unable to attend, and the Glasgow event. Those events were a great opportunity for the committee to meet people who are on the front line of caring across Scotland. The carers were young and old and from diverse groups. I express our sincere appreciation to those who made it possible for us to engage in that way in Glasgow and in Edinburgh. It was very useful indeed, and I hope that we have reflected those discussions in some way in today’s discussions, which are now on the record and will be considered further during our scrutiny of the bill. I thank the organisers very much on behalf of the committee.
As I said earlier, we do not expect the Cabinet Secretary for Health, Wellbeing and Sport to arrive until 12 o’clock. We have time to consider agenda item 4 now, return to agenda item 3 when the cabinet secretary arrives, and have our break in between. Do members agree to do that?
Members indicated agreement.
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