James Bullion and Baroness Hollins.
Q79 The Chair: Good morning and welcome back to this meeting of the House of Lords Committee on the Autism Act 2009. We are now commencing our second evidence session of the morning. In this session we are discussing responsibility and accountability for providing autistic people with care and support.
I will introduce our second panel of witnesses: James Bullion, who is the interim chief inspector of adult social care and integrated care at the Care Quality Commission, and Professor Baroness Sheila Hollins, former chair of the oversight panel review of Independent Care (Education) and Treatment Reviews, and a very eminent Member of our House. You are both extremely welcome. Thank you so much for coming.
This is a public evidence session and a written transcript will be taken. I once again draw attention to members’ interests, as published on the committee website. I notify members, witnesses and guests that there will be a two-minute silence at noon to commemorate VE Day, where I will ask everyone to stand, if they are able to do so. Having said that, I now invite Baroness Browning to ask the first question.
Baroness Browning: Thank you very much. Good morning, both of you. Could you outline how health and social care legislation sets out responsibility and accountability for providing autistic people with care and support? From your perspective, what is the role of the Autism Act 2009 in ensuring autistic people can access care and support? I will start with you, James, because I would particularly like to add this: could you outline the role of the Care Quality Commission in regulating bodies that provide autistic people with care and support, please?
James Bullion: Thank you, Baroness Browning. Good morning, I am very pleased to be here. I have been at the commission for a couple of years. Before that, I was director of adult social services in a couple of county councils. I have a 20-year background in provision of adult social care.
First, it is very important to mark the presence of the Act and the presence of the guidance itself. The Care Quality Commission has a formal responsibility for oversight of the provision of care through individual health or social care providers. To do that, we have our regulations. Those regulations refer to best practice in guidance and in legislation. The very existence of the Act itself is quite an important enabler for us to take our accountability of the provision of health and care and go and test through the inspections that we do every year, specifically looking at whether the needs of people with autism are being met and how well they are being met, and in some cases making a judgment about that through an inspection outcome.
Secondly, we have an oversight duty that relates to people giving feedback on their care[1]. Some 75,000 people contact the commission every year to describe their experience. Again, we carry out a number of surveys and operate that system so that we can voice once a year to Parliament within our State of Care report. In that, we can comment on autism or more broadly on learning disabilities, mental health and autism.
Finally, since 2023 we have had some accountability duties to local authorities under the Health and Care Act 2022[2]. We inspect councils and we are midway through doing that. We have a duty—paused—to inspect integrated care systems. Within those, again there is a focus on autism and people’s experiences.
On the role of the regulator, we do not set the standard, we test the standard. Where we find a breach of that, we can either prevent registration of care or we can enforce or cancel health and care, according to our regulations. The Act is important. Our role as the regulator is to try to take as much oversight. These particular moments of stocktaking are to try to shape and influence new guidance to set new standards and to create high expectations.
Baroness Browning: Could I follow up on that point, particularly with your inspection now of social services and the support and services they might provide specifically to the autism community? Within the Act, there is a provision that allows the Secretary of State for Health—
James Bullion: Yes.
Baroness Browning: You are familiar with it?
James Bullion: Indeed.
Baroness Browning: He or she can call it in if these services are not being provided. Over the years since the Act, I have submitted written questions in Parliament to ask how many times this has occurred, when the Secretary of State has called it in, and I believe I am correct in saying it has yet to be exercised. Is there any way in which your inspections would recommend that to the Secretary of State, that the Secretary exercises a power within this rather small but important Act?
James Bullion: It is an interesting question. Not to get lost too much in the soup of the legislation itself, but when we inspect adult social care we rate as well. In order to rate, we score whether the level of services are inadequate, requires improvement, good or outstanding. Where we come across a situation where LA responsibilities for care are rated inadequate against any of our quality statements—we measure nine, one of which is caring and would include this area of work and another is safeguarding which is relevant too—we then make a referral to the Secretary of State for action. We cannot enforce against local authorities ourselves, but the Secretary of State has that power under Section 50 of the legislation.
As we do that, we can point out ‘what’ is failing. It is possible that were the failure to be in a particular area, we would particularly refer to action that is needed. It would be the job of the lawyers to decide which bit of the Secretary of State’s powers you would then use, whether it is Section 50, which in our legislation already enables the Secretary of State to take action, or whether it is that call-in act in this Act. I am not sure I know the answer to that technical question. We would probably need to give you further advice on that, but it would be a trigger for one of those two.
Baroness Browning: Yes. It would be interesting to know whether that provision in the Autism Act 2009 could, in practice, be used today and whether there is any particular reason why it has not been used to date. If you have anything that needs a legal interpretation of that, we would be very interested to hear it, if you would not mind writing to us.
James Bullion: I am very happy to do that, yes.
Baroness Browning: Thank you very much. Could I move now to Baroness Hollins?
Baroness Hollins: Yes. I chaired the oversight panel and I will stray into other areas of my expertise. I am a parent of autistic adult children, and I was a psychiatrist and psychotherapist in the past. Most of my work was with children and then later adults with learning disabilities, a large number of whom were also autistic people. My work very specifically focused on working with people who had been traumatised and trying to keep them in the community. I have been a policymaker, and I have also founded a charity with my autistic son, which tries to help people understand the things in life that are very difficult.[3]
I will probably stray between those roles but I will try to focus a little bit on the work of the oversight panel in this answer because the oversight panel worked quite closely with the CQC. For some of our recommendations, it is quite important that the CQC will be able to implement them. One of them, for example, was that long-term segregation, from the number of instances that we had seen, we considered should probably be renamed “solitary confinement”. This has caused a lot of upset, but some of the conditions we saw of enforced social isolation really were no different to solitary confinement in another setting, but “long-term segregation (LTS)” I will stick to today.
We very strongly recommended that there should be mandatory reporting of LTS. I believe that mandatory reporting will happen, although there have been a lot of questions about the practicalities of it. When we first began our work, we found it very difficult to find out how many people were in long-term segregation. We reviewed 191 instances of long-term segregation—there are about 100 people in LTS at any one time.
The second thing that was very important in our recommendations was that the independently chaired Care (Education) and Treatment Reviews should be continued, because we found that they were effective at increasing the chances of people being discharged. Indeed, CQC has taken that over, but one of the real concerns—and it may be something for a later question—is about what comes next. Those IC(E)TRs are only funded until the end of the year and we believe that they should continue until long-term segregation becomes essentially a never event. We found that there was no therapeutic benefit for people being detained in long-term segregation.
One of the issues about how health and social care legislation sets out the responsibility and accountability for providing autistic people with care is that sometimes the guidance does not seem to have quite enough force and it is not taken note of. Indeed, recommendations from guidance and review arrangements in place, like the IC(E)TRs or the C(E)TRs in the community, are not taken seriously by commissioners and by providers.
I also want to say that the Autism Act is for all autistic people. Having a learning disability as well is what a co-researcher and expert by experience described as having a double whammy. It is very important because if you are an autistic person and you also have a learning disability, you are very likely to be excluded from services. Although it might seem as if learning disability services will provide a home and access to services for you, in fact I know from my son’s experience that it is a very good reason why he is often excluded, sometimes with unfortunate and difficult consequences. Do not imagine that the learning disability label is somehow an advantage; I do not think it is. I see the point of the Act in large part being about raising awareness and, as the guidance changes, being able to look for how the Act will enable best practice as it changes and develops. How the Act will raise more awareness and encouragement for the implementation of the Strategy.
I also think there is something about ensuring that commissioners are competent to commission specialist and reasonably adjusted local services and are held accountable for it. That was one of the emphases in the Health and Social Act in 2022. I am also hoping that the Mental Health Act will make a difference but we will probably come on to some of that later. Anything else that I should mention? No, that is enough for now.
The Chair: Baroness Hollins, thank you so much. We will move to Lord Hope.
Q79 Lord Hope of Craighead: My question is in three parts. To what extent are local authorities and NHS bodies fulfilling their responsibilities to ensure autistic people can access care and support? What are the main barriers that local authorities and NHS bodies face in ensuring access to care and support, and what are the best ways to overcome those barriers? Finally, what do you see as the main challenges in implementing the Autism Act strategy and strategy guidance? Baroness Hollins, could I begin with you?
Baroness Hollins: We (the Oversight Panel) were quite negative about the lack of care and support for people in the community, particularly when things become difficult. One of the reasons why people are admitted to hospital is because of a failure of community support. That is why people are admitted. There is not enough support and no anticipatory preventative support. Things have got worse rather than better.
I remember first working in this field back in the 1980s where we were working in the community and preventing people from being admitted. It was an open access service. I will talk about learning disability and autism together at the moment to give some examples. Today services offer episodes of care; that is the local community learning disability services. You have to be referred for a particular reason, considered whether or not you meet the criteria for the service because you are ‘not known’, even though you have got a lifelong condition. If you meet the criteria you will then be put on a waiting list to be considered for the particular support that you need. It is quite likely that you might be offered something that they offer; it might be a speech therapy assessment or a period of psychological intervention, usually not psychotherapy, and then you are discharged. But there is no anticipatory prevention.
One of the things that years and years ago—and there has been a lot of talk about this for years—is what happens when you have an elderly carer or when you have a sick carer and you know that it will be difficult when the family member dies. They make no preparation and say, as was said to me when my husband was terminally ill, “If there is a crisis, don’t worry, we can always admit him”. That was last year. That is what I was told. Despite all the work that I and other people have done, that is what I was told, “We do not do prevention but if there is a crisis let us know”. That is not okay and there is no allocation of social workers as a rule for people any more. The days of having a social worker have gone for the large majority of people, so you are on your own.
Think of the story of David Lodge. I do not know whether you know about David Lodge, but he was a man with a learning disability and autism, who also had a visual impairment, who was living with his elderly father. His sister, who happens to be a psychiatrist—this is all in the public domain—asked for help. She did not live nearby. She would ring her father on a Sunday and find out whether he needed any help, whether she needed to come over. He said he was fine on Sunday. When she went around later in the week she found her father was dead—he had had a heart attack—and her brother was moribund beside him on the floor. Nobody had called. There was no other assistance, nothing. There has been an inquest. There are lessons to be learnt. They are waiting for the LeDeR response.
This is what parents are terrified of, and yet we could anticipate it. That is a failure of Health and Social Care.
There is a shortage of social care providers. Social care providers can pick and choose. They can pick and choose the straightforward easy people to support. They do not have to support people like my son. They do not have to support anybody who gives them feedback or raises a concern. In our local services, I know several families who would on no account ever raise a concern. They have seen what happens to families who do raise concerns—they are out. It is difficult. There is no development of social care providers. Small Supports is a brilliant initiative, but many local authorities are not interested. I am afraid that the supported living movement—which I thought was brilliant when it first began—in some areas has become a rather unsatisfactory conversion of residential care into more isolated facilities with less interaction with staff and less interaction with peers.
The lack of choice for families and individuals is poor. Choice is quite important. To me one of the important things for social providers—I think is quite key and I am interested in James’s response—is that there should be a value base for any provider. It is not sufficient to be the provider who comes in and says, “Well, we decide what we are doing; we will send in staff”. For example, I said to a provider at the beginning, “Are all your staff autism trained?” “Yes, of course they are.” Fine, good. They sent a different person every day and then wondered why it did not work. Social care has to be relationship-based. There has to be continuity and an understanding about this particular person. It is not somebody coming in to do a task; it is about a relationship and a person being valued.
There are five things that we are all supposed to do every day for our mental health. They include things like having a meaningful relationship with somebody, somebody you know—what I call a hug a day. It can be a metaphorical hug a day but there has to be somebody in your life who knows when your birthday is, for example, and what you might like. If you ask care providers about somebody and what they know about them, they can pull out a big file, but you ask them when the birthday is and they will have to look it up. That is not a relationship of care.
Another is that you have to have a reason to get out of bed in the morning. You have to have meaning in your life. At the moment we have the transitions that we talk about. At 25 it is a cliff edge, after which you are essentially a retired person on a pension—a retired person who has very little chance of employment or meaningful occupation or even inclusion in meaningful leisure activities. That has got worse since Covid because so many providers closed, staff changed, familiar environments changed, and autistic people found it difficult to go back to their previous life, trying to make sense, trying to adjust, trying to readapt, and then discovering that the familiar places have changed.
So there you go. The crisis-led approach is wrong, there are no trauma services and there are too few opportunities.
Lord Hope of Craighead: Is this pattern you have been describing so graphically the same right across the country?
Baroness Hollins: There are good patches; there are good services. There are some areas that have developed Small Supports and some areas that have worked hard to try to develop. In the Black Country, for example, there have been some wonderful initiatives to try to develop community support and to change. I do not know what it takes to get everybody to do the same.
Lord Hope of Craighead: Thank you very much. James?
James Bullion: I must applaud Baroness Hollins for her description of what social work should be like. It is an excellent description. From our point of view at the commission we have made a number of findings, mainly in our State of Care report that we publish every year. If you look at the broad measures of health inequalities, last year we still see 13 years younger for the age of dying for someone with autism or a learning disability and still see 42% of those deaths avoidable. It is a very basic level; the inequalities that you associate with this Act and this population are still there. That is one measure of effectiveness. Then when we look in more detail at what we find through our inspection or survey work, the waiting times for access to community health and for assessment, the NICE guidelines say that it should be within three months and it is near on a year and longer for children.[4]
We have a very powerful experts-by-experience process every year that involves talking to some 17,000 people and we have a community mental health survey. A quarter of those people say they are not getting any of the support that they need. There is a powerful gap at a very broad level of whether people are meeting their duties or not. Then we look at what the barriers are to that. As Baroness Hollins has described, some of it is about the models, and the models themselves do not lend themselves to providing good support; they are split across organisations. On the issue of integrating around the person, the evidence in our inspection and local authority work now is plain to see. There is a lack of co-ordination, a lack of integration, and it is a later question about what Government should do about that. But the alignment between social care with the Casey commission and the NHS 10-year plan is already out of alignment. Steps could be taken to bring some of this into alignment in the short term. You can see integration is an issue.
Of the Independent Care (Education) and Treatment Reviews that we have undertaken—we have done 55 now—in 17 cases, the partnership has been able to work to reduce segregation and to start or get community support in place. It was a very good outcome for 31% of that cohort in the 55 cases, but it takes an absolute process to put that around people. You cannot do everything at that national level. As Baroness Hollins said, we have to get the local integration of these services to be much more effective. It is a key barrier. Inevitably behind that there is a resource question too about the balance between community services and supporting those with more complex or more intensive needs. There is still a gap around that.
What are the barriers? It is partly resources, partly integration, partly a distribution of roles across organisations. I have to say that the oversight of all of that is challenging. We will come on to accountability later, but single oversight of that is probably one of the levers that is not being used because it is not there.
Lord Hope of Craighead: Which are the bodies that are falling short? The question was about local authorities on one hand and NHS bodies on the other. Is there a difference between the two and, if so, what is it?
James Bullion: In a sense there is not; what is different is the task. In the local authority space of our inspections of councils—for example preparing children for adult life, teenagers—you can see that work is inconsistent across the local authorities we have looked at. Directors of adult social services need to pay more attention to it. It is complex work and in the context of all the other stuff they have to do, occasionally it is a minor activity when it should be a major activity. Whereas with the NHS, access to community health in particular and the discharge arrangements, we still see on any day 200 people needing to be discharged, 50% of those need a health service in the community and cannot be discharged, 25% need social care and behind that is housing. It is the same but it is for different reasons; different tasks and, therefore, different reasons.
Lord Hope of Craighead: Thank you very much indeed.
The Chair: Thank you. We will move to Lord Wigley.
Q79 Lord Wigley: The next question is a run-on in many ways. I invite Mr Bullion to start with a response on this. We may get interrupted, of course, during the course of it. The question is: to what extent do social care providers and NHS services provide autistic people with good-quality care and support? What are the main barriers that social care providers and NHS services face and what are the best ways to overcome those barriers?
James Bullion: In 2022 we strengthened our regulatory activity in providers of health and care through the Right Support, Right Care, Right Culture guidance that we issued. We set out expectations of what we were looking for, for the measure of what is good. We measure that at an individual provider level and you can see examples of good services, absolutely. We can praise those when we come across them, in particular where you have professionals working across different organisations and case-managing individual circumstances, and you can see some very good discharge practice too.
But in the main I suppose where I would begin with this one is the lack of effective training in workforce development and guidance thereof. We see evidence in our local authority work of patchy, inconsistent training. In some cases we come across local authority areas where all the adult social care members of staff are trained and then in the next inspection we do, only 50% have been trained. There is an expectation around understanding of autism, it is mandatory in legislative terms. We have amended our regulations to look at staffing to see if it is adequate but, almost more than that, are they competent to be able to carry out the task and have they been trained in autism awareness? How can you give reasonable adjustments if you do not understand what you are adjusting for?
It is a mixed picture and in the barriers there is a core funding issue here for prevention. In our local authority work we do not see enough evidence of preventative activity in this particular area. In other areas where there is a model for it—older people and the model around the Better Care Fund, which is a sort of mandatory integration process—you can see lots of examples of prevention, but in this area there is no mandatory prevention approach, no joint funding. There is continuing healthcare funding and local authority funding, and it is quite difficult for organisations to bring that together. It is quite a risky thing to do if there is not a vessel through which you can do it. That is a key barrier. So training, inconsistent transitions and workforce challenges are my three examples of barriers.
Lord Wigley: Thank you very much. Baroness Hollins?
Baroness Hollins: In the conclusion to my oversight panel report I said there were three key principles. One was that professional assessments, whether they are diagnostic or risk assessments or whatever they are, will not meet people’s needs without ongoing meaningful and supportive relationships with providers across both sectors. I can remember realising, when my son was quite little, that reports were not much use. I called them “so what?” reports, because they go on a shelf and nothing ever happens. Your needs have been defined but nothing happens. “So what?” reports have no place. Reports have to be followed up with a plan and the plan has to be enacted. That is important.
There is too much reliance on agency staff and it links to the training issue. Some services seem to be able to manage without agency staff. I visited a service recently, not one of CQC’s preferred providers, a Camphill community. It was very interesting, with no agency staff and no exclusions in the last 12 years. Compare that with some supported living providers where there is no sense of community, lots of exclusions and a reliance on agency staff. I know which one I would prefer if I was beginning again. It is quite interesting. Ideologies can sometimes get in the way and that can sometimes be a barrier.
The second thing is that when things go wrong at home or in the community they need to be sorted out in the community. You do not sort out a community problem by sending somebody to hospital.
The Chair: Baroness Hollins, I am so sorry to interrupt you but we will pause the evidence session now as we stop to commemorate VE Day. I invite all members, staff members and guests to stand if you are able to do so and the Division Bell will ring in a second.
Sitting suspended.
The Chair: Baroness Hollins?
Baroness Hollins: The third point I made in the conclusion of my oversight panel report was that trauma is usually at the root of the exclusions that eventually lead to hospital admission. This is something that is not understood. When the first IC(E)TRs were done, we found that the reports were not mentioning anything about people’s life experiences. They did not describe people’s trauma histories. I went back to the chairs and asked them to find out what people’s life experiences were and what trauma experiences they had had. Often there were repeated exclusions from school, for example. It might start by being excluded from the babysitting group—that is the first exclusion—and then the playgroup and the nursery school. Gradually the exclusions continue. That sets up a lifetime pattern of not belonging. Not belonging is very difficult. Adverse childhood experiences are much more common in autistic people.
In solitary confinement—somebody in long-term segregation—people’s life stories were usually unknown. People’s identity, their humanity and their human experience was not known and not understood. It is that lack of appreciation of the whole story that matters. We need to know what has happened for this person and how we can respond to them. What is called challenging behaviour is often a response to not feeling safe because so often one has been the victim, and people are far more likely to be victims in fact. The challenging behaviour is ascribed to the person who is being difficult whereas actually it is a response to an environment that is unhelpful.
The Oliver McGowan mandatory training is good but there is a barrier that is about a lack of appreciation of the totality of a person’s experience, which is why you cannot leave health, social care, education or family to sort it out. This is about understanding the whole person and their life experience and what they need to be able to feel safe and well supported, and not to feel overwhelmed. It includes all manner of things such as understanding an individual person’s need for scheduling, support around their sleep, their mealtimes, relationships and so on. That is probably another answer.
Lord Wigley: Thank you very much indeed.
The Chair: Thank you. Lord Addington.
Q79 Lord Addington: Following on the theme, in what ways are local authorities and NHS bodies held to account for the care and support they provide for autistic people, and what are the main gaps in accountability? What is the best way of closing these gaps? It is probably that last bit that we are most interested in. James, would you like to start?
James Bullion: Thank you, yes. Across health and care there is a broad accountability outlined in the legislation itself and then following on from that the guidance, which is in need of renewal and that is planned. The action plans that have arisen, such as building the right support, set out actions that all players—including ourselves as the commission—should be taking. That broad accountability in what we should be doing is largely shared and understood, albeit that it needs constantly renewing and refreshing. Our role as a regulator brings the accountability of trying to test out to what extent people are complying with best practice.
As I said earlier, our Right Support, Right Care, Right Culture guidance tells providers what we will come and assess as best practice. If people are not adhering to that we will not register them as a care service, which is required to operate under in the first place, and we can take enforcement action once we have assessed them. In theory we can cancel the provision of that care. There is ultimately a personal accountability by registered managers and a business accountability by a care provider, and obviously public accountability for a health service.
More recently in the Health and Care Act 2022 we were given oversight of local authorities. We are pursuing that now in a two-year baselining period to rate every local authority’s adult social care and within that we will apply the standards that I have referred to. We are looking for as we send our information return to councils, “Send us your autism strategy, send us the details of who has had training, give us examples of what is working well and what is not working well”.
There is a gap for us in holding NHS systems to account. We have a power to look at integrated care systems, which we have planned for but that is not yet in play, for understandable reasons given the difficulties CQC has had. That work was paused while we prioritised getting CQC back into a recovered position. We know a lot now about what the local councils are doing and they tell us about what health are doing in partnership with them, but we do not look directly at integrated care boards and integrated care systems. That would definitely add to our armour of evidence for lobbying for change or for holding people to account.
On strengthening further accountability, Baroness Hollins has already mentioned the forthcoming mental health legislation that would give a notifiable event to CQC. We get many notifications in other statutory areas of deaths, for example, and that would again strengthen oversight for us to be told formally and to build up a pattern of how good areas or individual providers are at dealing with this. The other part that is important is a periodic look. Whether it is the ‘Out of sight’ reports or the ‘My heart breaks’ review reports, we need to keep this area under scrutiny as a functional area, not just as part of something wider.
Finally, we come back to this question of who is responsible in our local area. I go back to my earlier point that integration is not very well described. It does not have a single actor in each area who might take an interest in this. Around an integrated care board table, autism would not be there as a single issue but as part of something else. Even learning disabilities are probably part of something else. We need to think about that. If I have a slight future worry on accountability—and I know you have not asked this directly—as I see the change in NHS England, which has a lot of strength in this area now and is using a lot of lived experience, we must make sure that this agenda is not lost from a health perspective. I do not say there is any intention for that but there is a risk that that might happen.
Lord Addington: You have identified that there is a risk that it falls into a larger group, and then is not as focused—“There are specific things you should be doing for these people”—in the two groups you have mentioned.
James Bullion: Indeed, that is right. Then at a local level someone with a single accountability for making sure that they can bust the barriers or knock heads together.
Lord Addington: My noble colleague?
Baroness Hollins: “Accountability, accountability, accountability” was the constant cry of the members of the oversight panel. It was difficult to see where that accountability should lie. Our overall feeling was that the failures were system-wide failings and you cannot say, “It is your fault” because it is a system that is not working but there are different ways that different parts of the system could be held accountable. I feel that commissioners have a huge responsibility and could be more accountable, but often they are not adequately trained and aware. Even though the 2022 Health and Social Care Act required that there is a lead on each ICB, they tend to also be the lead for about six other things. The possibility for them to be effective as champions for autistic people is difficult, but they are accountable and they need to be held accountable.
In a changing environment it is very easy for something like this to get lost. We believe very strongly that if somebody is admitted to hospital, there should be a contract for that admission. The example I give is that if you were admitted with a broken hip you would expect to get your hip fixed. If you are admitted as an autistic person, you can be admitted without any contract, without any anticipated discharge date, without any plan, and without any follow-up by the commissioner or the person arranging the admission. It is an inappropriate admission—because you cannot fix something that went wrong in the community in hospital—and the person will get worse and will never be ready to be discharged, which is why you have an average of 5.5 years in hospital. It is difficult to get better when you do not have anything to get better from; you have an environment that is wrong. That is what we saw time and time again.
The problem is that as long as this pathway exists it will be used, and as long as seclusion rooms exist they will be used. It seems there is no reduction in the number of cases of LTS because the facilities are there. Discharging people is not the solution; preventing people being admitted is the solution. However, it looks as if the Mental Health Act might be leading to that by taking learning disability and autism out of parts of Section 3. The difficulty is without a costed plan—and I did try to introduce an amendment—to require sufficient community services, to be honest, the Act will be a sham. That is quite a strong word to use but I cannot see how there will be change unless somebody is held accountable for developing the sufficient community services that are required.
It is simple as that. Fine words do not do the trick but somebody has to be held accountable for commissioning the right services. If commissioners are commissioning hospital admission as their solution we will not get community services and we will still have a crisis response. I think the accountability is missing. The recommendations in the My Heart Breaks (PERHAPS ADD A Link to the report in a footnote?
report go into some detail, so you might like to look at those.[5] It would take too long for me to go through them all.
There are three specific things that I think could help. One is specialist trained advocacy. Some parents have certainly said that they have found that having an advocate to represent their son or daughter is often more effective than a parent representing them, because parents are often seen as the problem. Also free legal advice for somebody who is admitted where there is no therapeutic purpose or value, to try to help to move things on.
Lord Addington: To clarify that, you think they are used as a containment for the person?
Baroness Hollins: Yes, yes.
Lord Addington: Very much so, and that is all it is doing? It comes across—
Baroness Hollins: There is no therapeutic purpose to the use of long-term segregation, none at all. Nobody knows what else to do. You will have some people try to argue that autistic people like to be on their own. They may well like to be on their own in their own safe place with control over their environment, but most autistic people actually want engagement but it is an engagement that is a safe engagement. Hospitals do not provide that. If you have a treatment need in addition then, of course, have that treatment but then there is the prospect of getting better, if the treatment has been adjusted appropriately. Reasonable adjustments are being quite well understood in acute hospitals. I think they are being better understood in primary care. I do not think reasonable adjustments are being well understood in mental health services.
Lord Addington: Yes. It is a lack of awareness and training coming through—
Baroness Hollins: Everybody thinks it is a specialist service, as if autism and learning disability are treatable mental health conditions. An autistic person told me that she needed trauma-informed psychotherapy and the local services said, no, she was not eligible because of her autism. That happens all the time. If you have an eating disorder and you are an autistic person, you may have more difficulty accessing that service and yet eating disorders are common. You have OCD, but the treatment for an autistic person with OCD will need to be adjusted to take account of the fact that you are an autistic person. You will not do well with treatment as usual.
I think that the reasonable adjustments are not being made and so there is an assumption that separate services are best. No, not if it is a mental health condition; you want the specialist in that condition. If you have breast cancer, you want to go to a breast cancer surgeon not to a general surgeon. The outcome will be better. That is the point.
The Chair: Thank you. Shall we move to Baroness Goudie?
Q79 Baroness Goudie: Thank you very much. It is very nice to see you both. Baroness Hollins, it is lovely to see you here in this role. My question is—you have answered some of it—from your perspectives how well do the National Health Service, local authorities and social care providers learn from autistic people’s experiences and handle feedback and complaints, and are they joined up? I will start with James first.
James Bullion: It is a crucial question and to some degree the “how well” answer is fairly easy to say: “not very well” is our evidence. It is important to say that the presence of systems that give feedback on care or the presence of formal processes of complaints are built into the system, in both health and social care. It is a professional duty of social workers and nurses for those practitioners or clinicians to put the person’s view at the centre of the work that they are doing. In a formal sense, the mechanisms are in place to handle feedback, to deal with complaints and indeed to learn from them.
In our work as a regulator we see a certain amount of evidence that people are learning from complaints or significant instances as they occur and responding to that with good practice, training or with an individual response where that is required. We have participated in this by taking various approaches or reports. I point to our published report, Who I am Matters. We went into hospitals and looked at people’s experience of their treatment and personal treatment—not medical treatment but how they were being worked with—and were able to ascertain the usual things that needed to still be learned about communication, adjustment and personalisation and not being treated as a wholly clinical issue without being treated as a whole person with a history, hopes and ambitions.
I am afraid those reports—Who I am Matters—give feedback on care where people often report that they feel excluded and not listened to. Indeed, many people carry their label before them, before the personal experience. For lots of people with autism or a learning disability, people see the condition and not the person, and the condition is so far ahead of the person. I was talking to somebody who was feeding back through their advocate that they were not able to have a conversation with their GP about HRT, because what was concerning the GP in that case was not so much what the person wanted but their ability to understand the very complex risks associated with having that treatment versus having that treatment.
We see this all the time. People need to be listened to as individuals first before we think about any kind of formalised feedback services. There is still a long way to go on this. In our recent work with local authorities, we can see a healthy beginning of a co-production movement—of planning services with people. I think that is partly because we put that so strongly in our assessment framework, the “I” and the “we” statements that we use about “what I can expect”, “what we should experience” and “what we should be giving to people”. We have stated that and you cannot get your good rating without it, so local authorities are doing that, which is a good sign as long as that then translates to an improvement experience for people. There is a long way to go in that learning.
Baroness Hollins: I agree. I think that co-production is transformative and there are some good examples of it. I know when the mandatory training amendment was moved to the 2022 Health and Social Care Act, I was insistent that it included co-design and co-delivery of the training. That is what the Oliver McGowan mandatory training is doing. I am seeing the impact of that in local services.
I will give you one quite nice example, which is that my son—this is before the training was rolled out—had not been doing very well at his local GP practice. We managed to arrange with another provider to involve him in delivering training for the GP practice. It changed everything. They started treating him in a very different way. They knew his name when he arrived, they gave him extra time; there was a complete change of attitude. I believe that co-delivery is a key and coproduction is a key.
That is also when you begin to see how the feedback can bring people who have fed back bravely, into roles that have further influence. I will mention two people. Alexis Quinn, who I do hope you will invite to give evidence, is an extraordinary woman who herself experienced long-term segregation and has written a book about her experience. She is now a manager of the Restraint Reduction Network and is being very influential in trying to change practice in this whole area of the use of restrictive practices for autistic people. It is built on her own personal experience but having experience also of being a member of the oversight panel.
The other person I will mention is the mother of a young man who was detained in long-term segregation. She wrote to me a couple of months ago to say how grateful she was for the IC(E)TR she had. She attributes that to the reason that her son has now been discharged and is living in his own home. She has become an adviser on one of the NHS England panels because of the constructive way that she engaged. She was treated by services as the parent from hell to begin with but the IC(E)TR helped people to advocate for her, and she stuck with it and has given us feedback from time to time. She is one of the few people whose identity I know, because all of our contacts were anonymised. It does work, it can work—there we go.
Q79 The Chair: Thank you. We are coming to the final question now. As you both know, the autism strategy will end in 2026 and so the committee is obviously looking at recommendations about government priorities. I will ask both of you in turn: what are and should be the Government’s priorities to enable the NHS and local authorities to provide autistic people with that care and support that we have discussed that they need and to ensure accountability? James, I will start with you.
James Bullion: Yes, and I am conscious of time as well, so I will be very brief. First, I think that alignment between health and social care in the way that this and other matters are taken forward, a single plan in the new guidance and clarity around that alignment and what is expected to be done nationally and locally would be helpful. All of the evidence that we have gathered for this session suggests that with proper investment in community support with the right model, across community health and mental health, some good things are happening. Health checks are much higher than they used to be, but once you get beyond the surface things there is a lack of provision and that is crucial.
Some kind of diagnostic push on getting the backlogs dealt with is absolutely critical. Obviously it will not work unless there are services to be supporting people at the end of or during that process, but it seems to me to be a strong priority that people are telling us about. The issue about the evidence we have found with local authorities and the commissioners and how integrated resources are used at a local level is quite a specialist point, but it is such an unlocker of activity if it is dealt with properly. As I say, there is no mechanism for that integration mandated in the 153 councils and the 42 health systems.
The Chair: Thank you. Baroness Hollins?
Baroness Hollins: I absolutely agree. Joint planning, and pooled budgets to end the way that the responsibility is passed backwards and forwards—that has to end. There has to be something that works for individuals. The system will only work when there is joint planning. We have to focus on community development and particularly on workforce development alongside discharge planning. We will never crack discharge planning or reduce our reliance on in-patient care until we have developments in the community. That has to include crisis provision in the community, but we have to do that and there has to be a mechanism for doing that. It is fundamental. There are a lot of particular things that I would recommend but I do not think there is time and space to share all of those particular things. We have talked about some of them.
The Chair: If you would like to write to the committee with some of your particular things we would be delighted to hear from both of you in a longer format. That would be very helpful. I want to say thank you to both of you for powerful insights today. I think you have provided the committee with some amazing examples and some genuine recommendations that we can reflect on and take forward. I am very grateful to both of you. Thank you very much indeed.
We meet again as a committee in public on Monday, 12 May. This public meeting is concluded and I draw today’s evidence sessions to a close. Thank you.