Good morning. Welcome to the Health and Sport Committee’s 18th meeting in 2015. I ask everyone in the room to switch off mobile phones as they often interfere with the sound system. I ask you to note that there are committee members who are using mobile devices instead of hard copies of papers.
We have received apologies from Nanette Milne.
Agenda item 1 is an evidence session with health and care regulators. It will focus on palliative care and will inform the committee’s approach to its forthcoming inquiry on that issue.
I welcome Rami Okasha, the director of strategic development, and Elaine MacLean, professional adviser on palliative care, from the Care Inspectorate. I also welcome Jacqui Macrae, head of quality of care at Healthcare Improvement Scotland, and Niki Maclean, director at the office of the Scottish Public Services Ombudsman.
We will go directly to questions and start with Dennis Robertson.
Good morning. We need to understand palliative care better. Should families and patients discuss death and dying with, say, their general practitioners much earlier than currently? Would that lead to an improvement in palliative care? Since we are talking about improvement, why do we not start with HIS?
The answer from the NHS Scotland palliative care guidelines and previous work that I have done is that it would be helpful for patients to have the discussion earlier.
We are not looking specifically at palliative care through our current inspection programmes. In the inspection programme for the care of older people in acute hospitals, for example, we touch on palliative and end-of-life care through the different themes that we look at. In our strategic inspections of adult services, which we do with the Care Inspectorate, we look at services in the wider sense. Some of the people whom we speak to are at the end of their life, but some are not. I am not sure that we have enough direct evidence from our current work to respond to the question.
It is important to have conversations about death and dying when people are able to make informed decisions and choices and have the capacity to do so. One of the encouraging signs that we have seen in care homes for older people in recent years is an increase in the number of people who, at the point at which they died, have had an anticipatory care plan, in which some of the issues have been discussed with them and their relatives. That figure has risen from 38 per cent in 2012 to 62 per cent last year, which is a relatively significant increase.
There may be good reasons why someone who dies in a care home does not have an anticipatory care plan, but the rising number of people who have one shows that more of those discussions are taking place. We very much welcome that.
Those figures are from the care home sector. What is the figure overall?
The figures are from care homes for older people. We also collect figures in care homes for all adults, in which the numbers who have an anticipatory care plan are slightly lower, as might be expected. I can provide those figures if that would be of interest to the committee.
That would be useful. My experience and, I think, that of others is that the handling of the end of life in the acute sector causes some reputational damage to the health service. It would be useful to have overall figures.
I think that we all agree that the discussions should take place earlier, but I wonder who should instigate them. If we identify that a person’s long-term condition is very deteriorative, should anticipatory care plans be set up? If so, by whom? Who instigates that?
When somebody comes into a residential care service, we expect those discussions to take place. I will ask Elaine MacLean to say a few words about what those discussions might be and might look like.
One of the important things is the need to join up those discussions in the health sector and the social care sector. There have been examples of encouraging practice recently, but we would like further development there. We suspect that, as we progress down the route of integration, the structures will be there to enable that to happen.
Elaine MacLean will say something about the conversations on admission to a care home.
Staff in the services that we regulate should be engaged in some of the anticipatory care planning, because they know the residents and the people who use the care-at-home services. We are looking to find out what the person wants. Where do they want to be looked after? Where do they want to die? Do they have any resuscitation wishes? Have their family been involved? For services to provide good end-of-life care, we need to have those conversations, and they need to be had early, when somebody is diagnosed with a life-limiting illness.
That is within residential settings, but how do we engage with the wider community? There are a lot more people in the community who are elderly and who have terminal conditions or long-term conditions with deteriorating aspects.
That is difficult. You asked who should instigate an anticipatory care plan, and I am not sure that it would be one professional or professional group. People touch services at different points during their illness or during their time with healthcare. A range of staff and healthcare professionals need to be skilled up so as to understand when the most appropriate time is to have the conversation. Different people will be ready—or not—to plan for the future and to have those conversations at different times during their illness.
As part of our work to give 200,000 days back to people who would have been in acute care, we are beginning to deal with how we build capacity for improvement and how we work with service providers to improve anticipatory care planning.
I have a question on Rami Okasha’s point about ensuring that all the sectors are on board. In preparation for this meeting, I spoke to a number of colleagues. As far as I can tell, the recording of DNACPR—do not attempt cardiopulmonary resuscitation—is not being transmitted to the emergency care summary. I know that terminal care is supposed to be up there as a flag on the emergency care summary or on the key information summary—KIS—but is it recorded that there is a living will, an anticipatory care plan, an advance statement or a DNACPR decision? Those are the four existing mechanisms for people to record how they wish to be treated. Are we recording that on the emergency care plan so that, when someone contacts the system, it is up there?
I welcome the fact that the figure for anticipatory care plans in care homes is 62 per cent and rising, but is that information on the emergency care summary?
It should be on the emergency care summary. General practitioners have an obligation to complete an anticipatory care plan.
My problem is that the DNACPR is not always recorded on that summary, because it is usually set up in the hospital and hospitals are not putting it on to the emergency care plan. There is a problem. I have had specific examples of individuals having a really rotten death because they were resuscitated in the community as a result of the previous agreement not being recorded before they went back to their care homes.
It is concerning to hear that anyone would have a death of that nature. In our joint inspections with Healthcare Improvement Scotland, when we have examined what happens across a community planning partnership area on services for adults, we have identified a need for improvements in the sharing of information between the health sector and the social care sector. We have found examples of good practice, but some of our joint inspections have made recommendations about improving practice on sharing between the two sectors.
I have taken an interest in the inspection of older people’s care in our hospitals, which does not read well over the 40 inspections. Although the guidelines are clear about screening for cognitive impairment and nutrition, we are still finding—40 inspections on—that those guidelines are not being applied and that there are failures in the system.
To go back to Dennis Robertson’s question, there are wider concerns about end-of-life care. Unfortunately, people’s wishes have not been followed in the acute sector, as some of the inspections have identified. What would give us confidence that guidelines will result in the end-of-life and palliative care that we expect and guarantee to people? Why would we accept the approach of having guidelines rather than a right to end-of-life and palliative care?
In the care sector, the national care standards play an important role. The review of those standards will play an even more important role. The current national care standards contain standards for end-of-life care. We expect the new ones to include a more human rights-based approach, which is based on wellbeing. That will allow us as inspectors and regulators to ensure that the care that is given is responsive, is person centred and meets the individual’s needs.
That is very much the way in which care is moving. In care homes for older people, overall performance on the quality of care is good—most services are considered to be good or very good—but there remains a small number of services at any one time that are not providing sufficiently good care across the piece, and it is important to target our scrutiny and improvement work on them. We try to assist in building capacity in the workforce. I do not know whether Elaine MacLean wants to say something about the work that she does on that. Ensuring that there is good knowledge and that there are confident staff in care services is critical.
Your figures show that around 45 per cent of the 1,000-odd patients who were reviewed did not receive screening for cognitive impairment. The guidelines are in place. The rules exist but, when you inspected, nearly half the people had not had that screening. How do we get to a stage at which we can be confident that the wider issues about end-of-life and palliative care will be addressed in the care setting? We are failing to treat almost half of those people. How can the committee be confident that it does not need to examine that?
We need to target our improvement work where it is necessary. The first stage is to identify failings and put in place the right support where it is required, whether that is support from the Care Inspectorate or support from the local authority and the health board working in partnership under the new integrated arrangements.
10:00
I will quickly highlight a fact that relates to what the convener just said. The latest study to be conducted in Scotland on patients who were admitted with a prior diagnosis of dementia—in other words, they did not require a cognitive assessment—showed that 50 per cent of them did not have that diagnosis recorded in acute hospitals. The situation is therefore even worse than the convener suggested; it is a total disgrace that people with dementia are not having that recorded on their notes in hospital. How can we expect those people to receive good care in hospital when that sort of thing is happening? That study, which as I said was a Scottish one, was published last year in The British Journal of Psychiatry.
From our inspection of older people’s care in our acute hospitals, we certainly know that there are issues around the recording and documenting of information. We are also aware of the impact that that can have on staff’s ability to deliver care consistently.
In response to the original question about how we can be assured that a guidelines approach is the right one, I have to say that such an approach—or indeed any approach—in isolation will not deliver such an assurance. In our care of older people in acute hospitals programme, the 40 inspections to date have not really shown significant improvement, but we need to remember that the inspections in the first tranche were baseline ones on which boards were expected to build. Over the past year, we have increasingly been working in a far more integrated way with our evidence colleagues on developing standards and with improvement colleagues to ensure that our inspection work is aligned with what they are doing and that we are building on inspection findings and targeting the areas where support is needed.
In fact, boards are far more frequently approaching us to ask where things are being done well and to ask our inspectors and improvement colleagues to take the post-inspection findings and run local improvement events in their areas. For example, NHS Lanarkshire, NHS Greater Glasgow and Clyde and NHS Fife have held such events, and I know that others are planning them. That is all about staff looking at their inspection findings and working with us to make improvements across the piece. It is frustrating that those improvements are not happening immediately, but the area is complex.
I am struggling with this a wee bit. I believe that the majority of people who are coming to the end of their lives have appropriate support, whether that is from the GP or their family, and the appropriate palliative care. I accept that some do not, but in the majority of cases we have respect for people at the end of their lives and the appropriate services are generally available.
What I am struggling with is people saying that they are looking at things, that they would like to do this or that or that the expectation is for this or that to happen. That is all very nice, but would it not be better to have guidelines that make clear what we should be achieving and which set out the baseline and the pathway through the integration of services to ensure that everyone knows exactly what is expected of them? I am hearing that we need to upskill people, that there are patches of good and bad and that there is improvement. That is all fine, but are there any timelines? Is there a pathway? Do we have the appropriate people to give that kind of training? I have not really heard anything about that. Perhaps Rami Okasha could respond.
The Scottish Government is working on a palliative care framework, and Elaine MacLean sits on the national advisory group for what we hope will provide a framework for action. However, that kind of improvement action, particularly with regard to care services, many of which are run not by the local authority or health board but by private companies or voluntary organisations, has to be targeted and localised. Although a national framework is important and welcome, improvement, in a sense, has to happen when people walk through the doors of the building, and it is really important that we build capacity in the providers to make those improvements.
It is important that there is a national framework and a standard that we should all be working to. The standards of care for older people in acute hospitals are being revised. There will not be a separate standard on palliative and end-of-life care; instead, the issue will be threaded throughout the standards. For example, when we talk about dignity and respect, the draft standards now refer specifically to the conversations that we talked about earlier and the need to provide privacy for those conversations to happen.
The local delivery plan for 2015-16, which focuses on driving improvement in the quality of healthcare, does not mention end-of-life or palliative care at all even though it is 32 pages long. Do you not see end-of-life or palliative care as something that needs to be mentioned?
The plan does not mention it or draw it out specifically, but in the pieces of work that we are doing in relation to older people in acute hospitals, there is an outcome for end-of-life and palliative care in the revised methodology.
We have not focused directly on end-of-life and palliative care to date as part of our revised inspection process, because we have continued to focus on themes such as food, fluid and nutrition, tissue viability, falls and cognitive impairment. That is partly about allowing boards to develop the work that was previously undertaken and is being undertaken around improvement in those areas so that we can inspect and reflect the improvement that is starting to happen.
That is not to say that we do not look at end-of-life care when we are out in clinical areas. A large percentage of people in our hospitals are older, and we cut across surgical, medical and front-door services. Within that, we will look at patients who happen to be older and at the end of their lives but we are not drawing that out as a specific theme at the moment.
That is all very well, but what about our children, young people and adults? Some have terminal illnesses and are looking towards end of life and appropriate end-of-life care. I understand that the majority of patients are older, but surely there has to be an all-encompassing aspect to palliative care to ensure that everyone—especially children and young people—has the most appropriate care at that very traumatic time in a family’s life?
Currently, we inspect hospices through our independent healthcare inspection programme. Overall, the standard of care in our hospice sector is very good or excellent. However, we are not looking specifically at the pathways of care for children and others across our inspection programmes. That is something that we could consider.
We inspect children’s services jointly with the Care Inspectorate, which is the lead agency, so Rami Okasha may wish to follow up on that.
We both inspect the pathway of support for children in any community planning partnership area. We also regulate a small number of very specialist services that provide palliative care to children on a care-at-home basis. Those services are provided by the Children’s Hospice Association Scotland, and the quality of the services that we inspect is very high.
Jacqui Macrae referred to our joint inspections. We certainly expect to see better sharing of information across agencies as more established mechanisms are developed around sharing information and working together among children’s services. The quality of the joint working that we find is high. We are happy to get back to the committee with any specific scrutiny evidence that we have on palliative care from those inspections.
I am conscious that Niki Maclean has not had an opportunity to come in. It might be interesting to know what role the ombudsman’s office might play when the partnerships are discussing all those issues.
As we note in our written submission, our experience relates to end-of-life care of the elderly. The complaints that we receive on the issue tend to be about that. They reflect all the issues that we have heard about here, including the issue of correctly assessing cognitive impairment and how that ties in with treatment and issues such as trips and falls. Unfortunately the cases that we see are ones in which there have not been anticipatory care plans or discussions with family members. We see cases where there is conflict between what the patient would like to happen and what the family members would like to happen because those conversations have not taken place.
We cannot offer much advice or guidance on the benefits of anticipatory care plans, because we tend to see the cases where they are not in place—we see the consequences of not having them.
Some other members are waiting to come in, and I will certainly get to them, but I will take Bob Doris first, as he has been waiting patiently for a wee while now.
I sometimes wait patiently—I know that that surprises you, convener.
It is worth putting on the record that the committee was determined to do an in-depth inquiry into palliative care irrespective of the decision on Patrick Harvie’s Assisted Suicide (Scotland) Bill last week. The inquiry stands in its own right and it is the right thing to do irrespective of the decision on that bill.
I put it on the record that, during the examination of evidence on that bill, we heard stories of some exceptional palliative care work in Scotland. Internationally, we are not in a bad place, but it is still not anywhere near good enough. I know that the issue has touched all the committee members’ lives personally and not just through our constituency case loads.
How do we drive continuous improvement? Getting to the specifics, I see that HIS is developing palliative and end-of-life care—PELC—indicators. The four indicators focus on identification, assessment and care planning, accessing patient information and place of death.
I am sorry to go back to numbers and statistics, because I know that each individual or personal story is not a number or a statistic. However, let us start with identification. Dennis Robertson rightly spoke about a baseline. If we are looking at how effective our system of palliative and end-of-life care is in Scotland, we have to know how many people are in the system or are trying to get into it to get palliative care in the first place. How do we measure that, irrespective of whether the presentation is with a GP, in an acute ward in hospital or in a referral to a hospice? I do not really care how people get into the system, but do we count the number of people in Scotland who need palliative care and then look to identify whether they get the service that they need? How do we identify them in the first place? How do we count the numbers?
There is no doubt that counting the numbers is a real challenge. One issue with the indicators is trying to work out where people are, because they are looked after in a range of settings. Palliative care is a journey that does not necessarily have a distinct starting point, which creates a challenge. Some of the data is not held nationally in a central repository. There is certainly work to do on the indicators to make the capture of the data easier by developing a framework.
Our director of evidence sits on the relevant national groups that are looking to revise the indicators along with the standards for specialist palliative care, which I think are from 2001-02. Those are significantly out of date and are a priority for our organisation to review.
This might be overly simplistic, but every person in Scotland has a community health index number. That information is held securely, but it is there. It cannot be outwith the realms of possibility to ensure that, as soon as someone presents as needing palliative care or a palliative care assessment, whether to the GP, hospital or whatever, that is flagged, so that we have a national record of how many people need palliative care and we can get a breakdown by age, gender and condition to allow us to design services accordingly. Does that happen now?
Currently, it does not happen. There is some amazing work being done through the CHI number. I have seen colleagues from NHS Health Scotland present work around being able to trace each point at which high-end users touch services and developing that to make gaps in social care data and district nursing more evident in the process. The ability is there, but it is not happening consistently at the moment.
10:15
Would it be reasonable for the committee to push for that to happen consistently across the country and for us to ask for a progress update? I want us to do that. Who would lead on that? Would it be HIS?
It would probably be jointly between us. We would need to involve colleagues in the Information Services Division. The right thing to collect is not always the easiest thing to collect, so it is about making sure that it is possible and that the infrastructure is in place to capture the data nationally.
I will not ask you any more questions on data collection, but there is an information gap that it is essential that we fill.
Yes.
It is a good point that we should understand where people are and how we can help them before we can deliver any of the other objectives, but if there is no priority in respect of palliative or end-of-life care, why would we collect numbers simply on that as a standalone? Why would we do that if the issue has not been singled out as a priority? There is a contradiction there.
There is more than one reason to collect data. One reason is to collect local data for local improvement. Although we are not looking at palliative and end-of-life care as a separate system at the moment, that is not to say that we could not do so in future. As I have said, we touch on it across our inspection programmes and we use a range of data and information to inform those programmes. We use that not just in prioritising where we will go for inspection but to help us focus the inspection once we are on site. That sort of information would be helpful to us, not just in acute hospitals, but as we extend the scope to look at community hospitals, specialist units for people who have dementia and across our strategic inspections with the Care Inspectorate.
The national advisory group on palliative care has had discussions on data collection and is keen that we collect data about palliative and end-of-life care.
Does that group take a different view, which is that palliative care should be prioritised?
The national advisory group is keen to develop a strategic framework for action, following on from the good work that was done through the living and dying well action plan and the recommendations in it, and building on the progress that has been made. The group is keen to develop palliative and end-of-life care so that there is equitable access across Scotland.
As a priority?
Yes.
I want to develop that point further. I will move away from data collection for the moment, although that is really important as it will allow us to get on top of what we have to do as a society.
I accept that some people who should get palliative care do not receive it but, for those who receive it, how is the quality of care inspected? I am interested in the care pathway. For some time, the committee has said that inspecting a hospice, hospital or care home provides a snapshot in time. We have frequently said that, when the inspectorate goes into a hospice or care home and digs out the patient records, we want it to go back six months, one year, two years or even five years to see the story behind the individual, so that they are not a statistic.
What work has been done to pick 100 or 500 human beings—I do not know the right statistic—who are currently in receipt of palliative care and inspect their care pathway, rather than just the care that they are receiving at that moment, to find out what their human story has been throughout the system? The committee has said repeatedly that that is the sort of thing that should happen. Does it happen and is there any intention to make it happen?
That is beginning to happen in the joint inspections for services for adults that we carry out with Healthcare Improvement Scotland. We have carried out four joint inspections as part of a programme of Scotland-wide inspection. We look to see that services are working well together to deliver good care for adults and older people in particular. We have a specific quality indicator in those inspections on prevention, early identification and intervention at the right time, and that allows us to look at the way in which palliative care is planned and delivered across healthcare and social care. As you say, it is critical that the care pathway is looked at and that we do not simply limit ourselves to looking at what happens in buildings or services.
In three of the four inspections that we have carried out to date, we found some encouraging signs of partnership working, and in one case we made some recommendations about the need for social care and health to work more closely together to get the pathway joined up so that people do not fall through gaps and so that services talk to each other and share information.
I am conscious that I might not have articulated myself very clearly—not for the first time, I have to say. I am not talking about a linear pathway where someone is in a care home, about how GP services interact with that or about how support is provided with acute services and anticipatory care. I do not mean that. I am talking about work that looks at a timeline and digs back six months, a year or two years to look at the quality of experience so that we assess the quality of service that is provided to the individual and not the bricks and mortar in which they reside. Mr Okasha said that that work may be starting to happen more generally, but would it be helpful if we did it specifically in relation to palliative care?
If we are looking at a long-term pathway for an individual, I think that it is helpful to look more broadly than just at palliative care to ensure that all the aspects of care over a long period of time are provided to the person. One of the things that we do when we carry out a joint inspection is file readings. We look at people’s individual circumstances, just as you say. We look at the history of the interventions and the support that has been provided to the person and we assess whether it was right or whether improvements can be made and there are lessons to be drawn. That is beginning to happen.
We look at the files, but we also sample 20 people out of 100 who are using services and we speak to them and their families and immediate carers. We have made an early start on that work. We are also looking more broadly at the quality of care across our services. Healthcare Improvement Scotland is about to go out to consultation over the summer about what that might look like, and that will cut across all levels of healthcare. We are looking at the scope and breadth of that, and following the pathway for individuals has been discussed as part of that and other processes.
As we look to broaden our current programme of inspection of people and services in acute care to include community hospitals and other areas, one of the key things for us—and one of the reasons and drivers for doing it—is that there is a gap around inspection of community hospitals. Also, when we are in acute hospitals, we sometimes see that things have happened up or downstream that have affected a person’s care in the hospital at that time. Our plan is to have a more board-wide approach. I know that that is about the system again, but one way of doing that is to trace individuals through the service. We might only get the story from the past six months, but we can use that approach and build on it to look across services at the impact on the individual.
I do not have another question on that, but I will just reinforce the point. My personal view is that it would be beneficial to pick 100 families where there is palliative care—or where there was and the person is no longer with us—to do an in-depth drill down into their experiences, and then to do the same in a year’s time or two years’ time to see whether we really are improving the system.
I thank the witnesses for their answers.
I have listened to what people have said and it seems to me that there are a number of issues. One is the lack of access. There is guidance about people being treated with dignity and respect, and we all expect that at all times, but how is it measured in relation to access to palliative care? The other issue is how we measure quality in relation to access.
In a way, the first issue is how we make sure that everyone has access. What questions do you ask to ensure that everyone can access palliative care?
I agree that access is not consistent. Our findings—particularly from the joint inspections of older people’s services that we did with the Care Inspectorate—certainly reflect that. We are seeing some really good practice, with teams working together and endeavouring to provide access in a timely fashion. However, in the processes that we described that involve following up with individual patients and groups, we are still hearing from individuals that access to services and equipment remains a challenge.
As you know, Healthcare Improvement Scotland is working with JIT and QuEST to build a bigger team that will look at improvement across health and social care. We have had additional funding for that work programme. Some of the programme will look at the work that we need to do at the higher, national level, but a portion of it will look at targeting post-inspection support.
It is too early to say whether access will be considered as part of that work, but we know from the findings that are coming out of our inspections that it is still an issue.
Could you explain what JIT and QuEST are?
JIT is the joint improvement team, which sits within the Scottish Government. On QuEST, I have a complete mental block—sorry. It is an improvement team that also sits within the Scottish Government. Those teams are coming together, so we will have a significant amount of improvement talent working across health and social care, instead of people working in silos in healthcare, social care and older people’s services.
When you carry out an inspection, how do you satisfy yourself that an institution that provides palliative care sees that as a priority? Obviously, provision varies according to the needs of each person, but the systems need to be ingrained to ensure that people are looking in that direction. As well as attending to people’s immediate healthcare needs—whether that involves cure or management—that means looking ahead to palliative care. How do you measure whether that is happening? You can measure whether somebody is getting the right treatment and is on the right care path, but where does palliative care fit in?
To be perfectly honest, we are not doing that at the moment. There is a gap. As Rami Okasha said, we have published four strategic inspection reports, and another four reports are at different stages in the publication process.
We are about to review our methodology with the Care Inspectorate. This kind of working is all new for everybody; partnerships are at a certain stage in their development and we know that progress is not equal across the country. There is now a very good opportunity, given the breadth and vast scale of the inspections, to look at whether we are focusing on the things that matter most and where we can be most helpful to partnerships as we move forward.
It may be that, within that process, we will have an opportunity to look more closely at palliative and end-of-life care to address the issues that you raise.
On the second half of Rhoda Grant’s question, which was about how we assess the quality of the care that is provided, I can certainly offer the committee some information on care services. For the purposes of palliative care, we are talking predominantly about care homes for older people among the services that we regulate, but care homes for adults and care-at-home services also play important roles.
Each of the 900-odd care homes for older people in Scotland gets at least one unannounced inspection a year—it happens more frequently where we have concerns. We ask services to complete a self-assessment of their strengths and weaknesses, and we ask for statistical information once a year. When we go in, we speak to the people who use the service, their relatives and carers, and we interview staff. Crucially, we observe the quality of interactions and how well care is actually being provided to individuals. Someone at an advanced stage of an illness may be unable to verbalise or talk with our inspectors, and it is important that we are able to assess that aspect. We have a set of trigger tools on palliative care that our inspectors use not only to understand what good practice looks like and should look like, but to assess it.
We take both the quantitative evidence and the qualitative evidence that we collect, assess it against the national care standards and arrive at our evaluation grade for the service, which is on a scale from unsatisfactory to excellent.
10:30In all care service inspections, we look at the quality of care that is provided. In a care home for older people, palliative care is integral to the nature of the service. We also sometimes look at the particular question whether people living with life-limiting conditions are viewed as being an integral part of the home.
The quality levels for that quality statement are broadly consistent with those that we would expect to find for all aspects of care. We find that care is unsatisfactory in a very small percentage—about 1 per cent—of care homes, in some it is weak and in some it is no better than adequate. However, in the majority of care homes it is good, at about 40 per cent, or very good, which is also at 40 per cent.
The story about what is happening in care homes is good. When we identify poor practice, our improvement focus comes in and we seek to work with the service to make sure that it comes up to scratch very quickly.
In the cases that we see—and a palliative care case is in the compendium that we put out this month—the issue can be confusion as to whether the individual was receiving treatment or needed to receive palliative care.
In a lot of cases, it is not necessarily clear that the person is receiving specialist palliative care services. However, they are at the end of life and require end-of-life care, in which their families need to be involved. It is not necessarily an either/or issue, but, in the case that we published last month, it is very clear that there was confusion among the team of professionals in the clinical setting about whether the individual was receiving palliative care or treatment.
I suppose that, with some conditions, it may be difficult to say whether it is possible to save someone’s life. There will always be cases in which people have to have an eye on palliative care while looking at prolonging life and giving treatment. It is complicated, and I understand where some of the confusion might arise.
The particular difficulty in the case that I mentioned was that conflicting messages were being given to the family. One part of the team was explaining that the individual was receiving palliative care, while the other members of the team were offering treatment. The family was obviously very conflicted in that situation.
Can Elaine MacLean help us with the distinction between palliative care and end-of-life care?
Palliative care is a philosophy, and end-of-life care is part of it. I think that separating the terms causes confusion.
Palliative care is good care that is given when someone is diagnosed with a life-limiting illness, and the need for good end-of-life care has to be recognised early on in the person’s journey. When I talk about palliative care, I am using it as an inclusive term that covers end-of-life care.
People have to live with their illness, as they go through all their treatments. They may eventually reach the stage where they need end-of-life care. The need for end-of-life care is not easy to determine because, with many conditions—dementia, for example—a person may need end-of-life care for two or three years. It is very difficult to diagnose when someone is at the end of their life. That difficulty is recognised in the guidance that has been produced on caring for people in the last days and hours of life.
We are almost back to Dennis Robertson’s first question. Does Colin Keir want to ask a supplementary question?
Can I come back in?
Sorry, Rhoda—I will give you a fourth question.
Should we have a staged process? It sounds to me as if what matters is when the process starts. We all know that at some point we will need end-of-life care, or at least most of us will. Perhaps we do not start palliative care early enough.
When people are hale and healthy, there could be a discussion about how they would like to be cared for if the need arose. As people’s health deteriorates, or if they are diagnosed with something that is terminal, the discussion could become more intense as the picture unfolds and the circumstances that they are up against become clearer. That would then become a plan that follows someone throughout their life and which, by the time that the need for care is imminent, has been discussed a lot, so the individual’s wishes are known and it is not such a difficult thing to talk about.
That would be the ideal situation. It would be a cultural change that we might like to see in the future. It is easier for people to talk about death and dying when they are well. When they become unwell, however, their wishes might change. That is why it is necessary to start the anticipatory care plan when somebody has been diagnosed, so that we can learn what the patient’s wishes are for the future.
Thank you. Does Colin Keir have a supplementary question?
I would like to follow up an answer that was given to Rhoda Grant on identifying the gaps that appear to exist. We are talking very generally about palliative care as if it is just one thing. I know that some notice has been taken of the fact that people’s circumstances are different, but with some conditions there are serious difficulties as the person heads towards palliative care. I am trying to get my mind around the identification of the gaps that apparently exist in the services that we provide. What conditions are proving most difficult to provide for? With which do we struggle to find a pathway to end-of-life care?
I am not sure that we have enough information at the moment to comment on specific conditions.
There are differences between how you would deal with someone who is coming to the end of their life as a result of cancer or dementia and how you would deal with people who have a condition such as Parkinson’s disease or Huntingdon’s disease. I am asking about the differences in approach, rather than there being an all-encompassing approach. At what point is what is actually required identified, and how readily available are the specialist services?
Perhaps Elaine MacLean can help with that, given the discussions that she will have had in her group. We probably all recognise that some of the best palliative care is provided in the area of cancer, where it has been developed over a number of years. That would not be reflected with other life-shortening conditions or terminal illnesses.
The thing with palliative and end-of-life care is that palliative care is based on need, not diagnosis. Palliative care should be provided for people with any life-limiting condition, which could include neurological conditions such as Huntingdon’s disease and multiple sclerosis, as well as end-stage diabetes and end-stage cardiac disease. Palliative care is an approach that involves looking after the affected person and centring the care around that person, no matter what condition they have.
I am aware of that. What I am looking for is information about where the difficulties lie in providing that care. Someone might need palliative care, but that does not mean that we can say, “This is the right setting for them,” or, “This is the wrong setting for them.” Have you assessed how easy it is to find somewhere that someone with Huntingdon’s disease, for example, could go to? I know for a fact that it is incredibly difficult to find palliative care for some people. Has such an assessment been made, or are we still talking just about the generality of palliative care here?
On care home providers, we must remember that some are private providers. The care home assesses whether it can meet the needs of that person, and—
That takes me back to the question of how easily available palliative care is if we are leaving it to individual care homes to decide what type of care they provide. How can somebody in Aberdeen spend the end-of-life stage in their own community if they have to be sent to Glasgow for the facilities that they require for their particular end-of-life need?
The local authority has some responsibility, but you make a very important point about how and where services are provided. One thing that we are likely to see in the future is a change in the nature of provision. For some people, a residential setting, such as a care home for older people, is not necessarily the right place for them, or the place where they wish to spend their final years. Some people might prefer intensive care at home. It is important to make sure that there is a choice and that people have the ability genuinely to exercise that choice.
I do not think that that answers my question, but there we are.
I suppose that the issue is what choice there is, and the greatest challenge is how we can create that choice at the end of life.
If I remember correctly, QuEST is the quality, efficiency and support team—I just wanted to put that on the record.
I am considerably interested in a number of the points that have been made. We have talked about audit, and obviously the inspection system is mainly audit based. However, my first question is about research, which we have not mentioned yet. Should we think about developing research so that we know whether Marie Curie is right that 11,500 people are dying every year without effective palliative care? I do not know where that figure came from, but there should be research into it.
My next question is about the £3 million for community palliative and end-of-life care that the Government announced some years ago. Do we know what happened to it? Has there been any assessment of that?
On primary care, general practitioners are best placed in the community to provide the final anticipatory care plan. I have just been through that with my mother-in-law. We had an excellent GP who said, “These drugs should be administered if this happens.” We did not have to call in a doctor to find out what was going to happen because the drugs were there—there was a package that could be opened, so we did not have to go to the chemist to get it; the drugs were available 24/7 for that last phase. Okay—the medicines might have been wasted, because they were not actually used. Nevertheless, there was an excellent plan. We all felt good about it, and the person concerned had a good death.
Will end-of-life care be part of the new inspection system for primary care that the Government has announced? If so, will your organisations be involved in it? Are you involved in discussions on the nature and format of the inspection process?
My questions are: do you agree that we need research to give us information; what happened to the £3 million that was announced; and what is going to happen under the inspection system for primary care, in which GPs will be critical to delivery?
The SPSO is on the edges of the discussion, but there are two things that it may be helpful for you to know.
First, I know that Marie Curie is looking closely at our investigation report summaries to see whether there is anything that can inform its work. I think that that is useful. The Scottish palliative care partnership is doing the same thing. I hope that that will support some of the research that needs to happen.
Secondly, we receive very few complaints about GP provision of end-of-life care, which suggests to me that it is being done well.
Healthcare Improvement Scotland is involved in the work regarding GPs. I am not close to it but I am happy to ask for some written information to be submitted, if that would be helpful.
We are not involved in the inspection of healthcare services. However, in relation to social care services, we are reviewing our methodology, both for scrutiny and improvement, with a view to the new national health and care standards being in place. That will be critical to developing a way of assessing the quality of care to make sure that it really meets the needs of individual people. That goes back to Mr Doris’s point about ensuring that we look at people’s real experiences and not just statistics.
10:45
I have one further question. When I chaired a hospice management committee, I was involved in developing close liaison between the hospice and hospitals or hospital units. Does the inspection system ensure that there is good liaison? Hospices have people with really good, expert knowledge. Are those people being brought into the acute units so that they can advise people quickly on effective end-of-life care? Does that happen in all 32 acute hospitals?
I am not 100 per cent sure whether it happens in the 32 acute hospitals. In my experience, there is good communication between hospices and acute hospitals. It is not something that our inspection programme of older people in acute hospitals looks at.
That might be something for you to have a think about.
Has there been any assessment of that? You say that there is good—
I am not aware of any assessment happening recently.
We have heard that those who have experienced specialist palliative care, and their families, have found it to be very good. It is generally thought to be good, but it goes beyond specialist in-patient care. What assessment, evaluation or inspection—
Do you mean of palliative care teams within hospitals?
I am asking about the interface between the hospital and the community. Has there been any assessment of that area so that we can say confidently that all these services are of a certain standard and quality?
No.
Do we just presume that they are of that standard and quality?
We touch on that very lightly within our joint inspection programme when we speak to patients who have moved from hospital to a hospice in the community and when we speak to their relatives. However, it is not something that we look at formally.
Is the issue one that the SPSO has identified?
We have seen a very small number of cases that relate not to the interface between hospices and hospitals but to instances of people returning home and being put under the care of their GP. We have seen some cases that relate to issues around pain management, for example, in the transition from hospital to home.
Dr Simpson returned to the issue of identifying those who are in need of palliative care and assessing the quality of service that they receive. I think that we will need to be brave and fearless in accepting that the more that we do that, the more we will identify service shortfall. That is where we are and it is our responsibility to plan forward in that respect.
We have talked about palliative care teams in hospitals and various health and social care professionals. Who is the champion of the person who needs palliative care? Is there a single point of contact for that person and their family? Is it the GP, a nurse specialist or a social worker? I get that there is a multi-agency approach, which by its very nature can lead to potential communication issues, but is there a single, identifiable point of contact for providing support for the individual?
Given that we are scrutinising the Carers (Scotland) Bill, which looks at the bigger picture—not just the person potentially in receipt of palliative care, but the at-home carer who is providing some of that palliative care and the support that they need—can we point to an individual who would not see a patient needing care just as a number or statistic, within a rigid or flexible structure or whatever, but as a person with a family? They would be the go-to person for championing the patient and their family. Who would that be?
The joint inspection findings show evidence of good practice in some areas where there is a named healthcare professional for a particular family; it might be a different professional, depending on the person’s primary needs. I am not sure whether that is consistent across the country, but we are certainly seeing good evidence of that. Carer’s assessments are being undertaken, but there is a still a gap there, as there is with the subsequent assessment. Some carers are saying that they are not being provided with the personal support that they might want, and that is also coming through in our inspection findings.
Does anyone else want to come in on that? I should point out that we are trying to set the scene for a future inquiry. Who would be responsible for drawing this together on a national basis? I accept that a social worker might have an interest in one area, but in other areas a nurse specialist might be the champion, depending on the condition; indeed, that was a point well made by Colin Keir. Ms Macrae, you mentioned good work at a local level on having a lead professional or champion for an individual and their family. Is anyone drawing that work together at a national level and rolling it out as best practice?
Within the boards, there will be an executive lead for palliative care. That will eventually link indirectly to families to ensure that there is a strategic lead as well as individual local work.
That might be something for us to consider.
If there is a lead person, do they look at inequalities in a region and at areas where there is good practice or where there is an absence of that or poorer practice? How do they evaluate and identify the gaps?
I am not sure how they are doing that, but they are certainly linked to the national groups and to national work at Government and strategic levels.
Do you know whether any of that is being worked on? Are we learning from best practice and sharing intelligence? Is the ombudsman’s office, with its experience and intelligence, being involved?
I do not know that information to that sort of level.
Do you know whether that is happening, Niki?
No, but perhaps I could make a slightly tangential but related and, I think, important point. Certain areas have a lead person, but in the cases that we see, one of the primary issues is that those who have most information about patients—the carers and families—are not being involved in discussions and decisions around end-of-life care. It would be helpful if a lead person had that responsibility, but the more basic issue is that we are not asking the people who have information on the patients about how to treat them. That seems a shame, because they are the people who know those patients best.
That is an extremely important point. One indicator of quality that we assess is the views of the relatives and carers of individuals who are resident in a care setting. We find that their views are essential in understanding how good the quality of care is that is being provided.
This is not always about clinical intervention; I am thinking about care in the community and people’s choice to be at home at that point. Given that carers might go to someone’s home every day—perhaps three, four or five times a day—how would we develop that workforce? Continuity in such a situation is very important.
Absolutely. We regulate and inspect care-at-home services, and they are subject to an annual unannounced inspection. The nature of that inspection is very different, because inspecting what happens in someone’s home is different from inspecting what happens in a residential setting where we have right of access 24 hours a day. We do inspect care-at-home services, and we have found the quality of care to be good. Last year, we published an extensive report on our findings over a number of years, which I am happy to share with the committee if that will be helpful.
My question was whether we are moving to a point at which we are not just caring for people so that they can be at home and stay at home over a longer period of time but whether we are moving into a phase where the objective is to give people the choice, for example, to die at home.
Absolutely.
It is going to be quite a different challenge for care workers to go through the whole process of someone whom they have known over a considerable period reaching the point of death. We know that nurses and others are trained to deal with those situations, but is any investment being made in the care workforce to enable those people to play a full role in such situations?
That is a really important question, and it will become increasingly important as the nature of provision changes. As a result of our joint inspections with Healthcare Improvement Scotland, we have found a number of examples in some areas; when we looked at the provision in Angus, for example, we found that the proportion of older people living at home for the last six months of their lives was significantly higher than in other parts of Scotland and that they had improved access to palliative care, including day treatment. There are some parts of the country where such provision is clearly more embedded and is working better than it is in other parts of the country.
As an inspection agency, are you able to evaluate the quality of palliative care at community level?
To a limited extent. We would have to be quite careful about the conclusions that we would draw from that.
Is that something that you as an inspection body have identified as a priority?
Absolutely. One of the things that we are doing at the moment is reviewing the way in which we scrutinise and inspect all types of care service. How we look at care-at-home services will form a really important part of that, because they will become an increasingly important aspect of how people are cared for in future, not just in palliative care but across the piece.
I am aware that that was a conversation between Rami Okasha and me, but does anyone else wish to comment on that point? If not, we will move on. I call Mike MacKenzie.
In a sense, I wish to return to the territory that you have just covered, convener. I have to say that the discussion seems to have been largely subjective, and almost anecdotal. Dr Simpson mentioned the Marie Curie study suggesting that 11,500 people are not receiving adequate palliative care. If the committee were to return to this subject in three, five or 10 years’ time, how would it know whether the quantity and quality of palliative care had improved?
The evidence that we seek to present on quality of care is based on our scrutiny evidence. We are able to say that, in a given year, a certain number of care services are providing certain types of care and are performing at a certain level and at a certain percentage. That work is very much focused on outcomes—in other words, what we observe to be the quality of life for people using the services.
We are also able to collect and track more raw data, which is about inputs. Data such as the number of care services in which NHS Scotland’s do not resuscitate policy is in place or that have an effective bereavement policy are measurable and can be tracked, which is what we do.
However, it is important to recognise that, as far as people’s outcomes are concerned, such inputs on policies go only so far. It is insufficient to consider just the inputs in measuring quality; we need to consider the outcomes, too. What is the impact of all the policies, and do they help people in difficult circumstances live better lives?
In response to your question how, in five years’ time, we would know that things had improved, I think that we are moving into quite a different landscape with regard to the delivery of health and social care, and we have a way to go to make our methodology and how we measure things really robust. Things that we are measuring around the fundamentals of care, including dignity, respect, person centredness, food, fluid and nutrition and the assessment of capacity, should be there for absolutely everybody, regardless of where they are.
We are starting to see an improvement, and hopefully that trajectory will continue. Measures are already in place, as we can see, but we have to consider how we can get better at capturing, using and sharing data across agencies and how we approach measurement in general.
11:00
Because our work is by its very nature about telling the stories of families, our evidence will always be anecdotal.
As for knowing whether there had been improvement, I think that it would be seen in the stories that families tell and in better communication. We recently produced a video with NHS Education for Scotland featuring a family in which the mum and her three daughters were all nurses. When the daughters talked about their attempts to bring a complaint about the end-of-life care of their mum, they said things like, “We felt that we were an annoyance,” “We were dismissed,” and “We were too intimidated to raise concerns.” Improvement would mean not having those kinds of stories.
With regard to the handling of complaints, we see a lot of good practice—indeed, we note that in our submission—but we also see a lot of defensiveness when people bring complaints. Improvement would mean not being defensive when families raised issues.
Data collection and analysis and presenting the overall picture always seem to be a work in progress, and there is no baseline against which we can measure and demonstrate progress. Perhaps I can turn my initial question round and ask for your views on how things have improved in a measurable way over the past five years.
As far as baseline statistics are concerned, we have an annual return in which we seek from care services the same or similar information over a consistent number of years, and we use that to track whether the indicators are going in the right direction. As I have said, the number of people who died with an anticipatory care plan in place has risen from 38 to 62 over the past three years. If we look at other areas, we see similar rises in the number of services—
I am sorry to interrupt, but is it right that the figure has increased from 38 to 62 across the whole country?
Yes, from 2012, there has been a rise from 38 per cent of people in care homes for older people—
I see. You mean 38 per cent.
The percentage of people in care homes for older people who, when they died, had an anticipatory care plan in place rose from 38 per cent to 62 per cent. There is improvement that can be tracked there. There are other indicators that can be considered, including the number of care homes for older people that have a bereavement policy in place to ensure that staff are very clear about what to do at the point of death. Over the past three years, that figure has risen to 84 per cent.
However, although there are indicators that can be tracked, the important point to stress is that those indicators relate to inputs and the policy that is in place, and we need to ask whether those increases are having an impact on the quality experienced by service users. That is where our inspectors’ evaluative judgments about the quality of care become really important.
We have seen the quality of care improving across the piece over the past three years, but there are still cases where the quality is not sufficient. However, that does not mean that it is always the same care service that is doing badly. When a care service is not performing well, we try to bring it up to the level at which it should be performing.
Sometimes it is difficult to sustain improvements. When a service performs poorly, interventions are put in place and the quality goes up, but then it slips back again. The area that we need to address is how we embed and sustain improvements.
If there are no more questions from committee members, I thank the witnesses very much for attending and taking part in this discussion. We decided to use this morning’s evidence session as a scoping exercise for the inquiry into end-of-life and palliative care that we intend to carry out not in 10 years’ time but, I hope, sooner than that.
Thank you very much for your time, your evidence and your patience this morning. I suspend the meeting for a changeover of witnesses.
11:04 Meeting suspended.Previous
Attendance