Women and Equalities Committee
Oral evidence: National Disability Strategy - 26 04 23, HC 241
Wednesday 26 April 2023
Ordered by the House of Commons to be published on 26 April 2023.
Members present: Caroline Nokes (Chair); Dame Caroline Dinenage; Mark Jenkinson.
Questions 33-79
Witnesses
I: Tim Nicholls, Head of Influencing & Research, National Autistic Society, Maya Stretton, Young Ambassador, National Autistic Society, Jackie O'Sullivan, Executive Director of Communications, Advocacy & Activism, The Royal Mencap Society, and Ciara Lawrence, Engagement Lead, The Royal Mencap Society.
II: George Appleton, Head of Policy, Care England, and Jim Blair, Consultant Nurse and Associate Professor (Hon.), Learning Disabilities.
Written evidence from witnesses:
Care England [NDS0014]
National Autistic Society [NDS0022]
The Royal Mencap Society [NDO0027]
Witnesses: Tim Nicholls, Maya Stretton, Jackie O'Sullivan and Ciara Lawrence.
Chair: Good afternoon and welcome to this meeting of the Women and Equalities Committee. British Sign Language interpretation of this evidence session is available for viewers on parliamentlive.tv. That is available on channel 13 on the programme guide, or by using the link published by the side of the video player on this meeting. Subtitles will also be made available for viewers watching the recorded version of the session.
I start by thanking our witnesses for coming along this afternoon. We have Tim Nicholls, head of influencing and research at the National Autistic Society; Maya Stretton, who is a young ambassador for the National Autistic Society; Jackie O’Sullivan, executive director of communications, advocacy and activism at the Royal Mencap Society; and Ciara Lawrence, who is the engagement lead at the Royal Mencap Society. Are you all content for us to address you by your first names?
Maya Stretton indicated assent.
Tim Nicholls indicated assent.
Ciara Lawrence indicated assent.
Jackie O'Sullivan indicated assent.
Q33 Chair: Great. I have nods all round; thank you. Members of the Committee will ask you questions in turn. They will make it clear to whom they are asking the question, but if at any point any of you wish to add anything, please raise your hand and we will try to bring you in at an appropriate time. I will start the questioning. My first question is for Tim and then for Jackie. We gather from some organisations that there are omissions from the Government’s national disability strategy that you would like to have seen included. Specifically, what is it that you think would improve the lives of people with learning disabilities and autism?
Tim Nicholls: The first thing to say about the national disability strategy is that its current status is still unclear, and it is unclear which of its actions are still happening behind the scenes while the legal case is ongoing. Back when the strategy was launched and we looked through it at the National Autistic Society, we were very conscious that although it was a collection of actions, and often good ones, there was not necessarily that unifying strategic thought behind it. There were some very good actions—for example, where it really closely aligned with the national autism strategy and embedded some of those things—but for other things it was a bit less clear; in some cases, it felt a bit more like a shopping list of actions. Then a couple of things led to it being even less clear. Beyond this, is there a long-term strategy? What are the things that will happen in the next years—in the second year and beyond? Obviously, those have been rather overtaken by events; none the less, when a strategy is being pulled together that is an important thing to remember.
If I were to pick one missed opportunity in the national disability strategy, it would be the disability employment target and reducing the disability employment gap. We know that the autism employment gap is far wider than that. There was a really good opportunity there to set a new, more ambitious target, and to put the strategic actions behind it that would lead to reaching it. That was not done within the strategy, so that is the real missed opportunity for us.
Jackie O'Sullivan: I agree with a lot of what Tim said. There seems to be a good vision and a good set of actions, which are really welcome, but the strategy bit that links them together seems to be a little light. The big omission for us is social care, because 50% of the social care budget goes on working-age disabled adults, and it is really important for people with a learning disability. I think that was omitted because at the time the strategy was developed there was lots of social care reform activity going on, but we are in a different space now.
We would also like to see recognition that disabled people are not one homogenous group. There are vast differences even within learning disabilities. We would like to see a drive towards getting a better breakdown of data, so we can really start to analyse what would make improvements for particular groups. For example, a drive to make websites accessible is really welcome, but what do we really mean by that? For somebody with a visual impairment, that might be a screen reader, but for somebody with a learning disability, it might be clear, accessible language and the use of easy read. Such things would be really helpful, as well as some targets and some clear timelines, as Tim described.
Q34 Dame Caroline Dinenage: Lovely to see you all; thank you for coming in. My first question is for Jackie. I want to talk about some of the disparities in the health expectations of people with learning disabilities. Why is it that people with learning disabilities are more likely to die younger than the general population?
Jackie O'Sullivan: The last LeDeR—Learning Disability Mortality Review—report from 2021 says that 49% of the deaths reported were avoidable. The confidential inquiry into premature deaths of people with learning disabilities, CIPOLD, from 2013—a while ago, but it is the latest that we have—says that they are more likely to be related to healthcare than to preventive action. It is not that people are getting lung cancer because they are smoking, so it could have been prevented; it is more that the sort of healthcare they are getting leads to the avoidable death. That is why the Oliver McGowan mandatory training is so important.
Looking again at LeDeR, we know that avoidable deaths are higher in the north-west than in the south-west, so there is a role for the integrated care systems to come together and look at what is going on there. What are people doing in the south-west that could be shared with north-west areas? We know that death rates are higher among black and Asian people with a learning disability; that is something to really investigate to look at the intersectional issues there. Then we need to look at reasonable adjustments and delays in treatment. If a scan, a prescription or something like that is delayed for any reason, a lot of people will be able to chase that, but it may be harder for people with a learning disability, and harder to use electronic systems. Then we have “Do not resuscitate” notices, which are sometimes misapplied, and sometimes confused with “Do not treat” notices. Then there are ceilings of care, which should not be applied to working-age adults, but often are. There is a raft of issues there.
We know that respiratory infections are a common cause of death, as are bowel and stomach cancer. There may be a case for earlier screening, which could be really helpful. We know that sepsis and constipation are problems. Sometimes it could be about having simple guidance about not overusing medication that causes constipation, and making sure that is monitored regularly. It is complex and needs further work, but there is some information in LeDeR that we are not acting on.
Q35 Dame Caroline Dinenage: The LeDeR reviews produced a number of very worrying findings. The DNR issues were horrifying. The Oliver McGowan training came out of one of the recommendations from that review. It took an enormous amount of collaborative working and a lot of pressure from a number of places to get that up and running. What evidence do you have that something is being done about the other findings and recommendations that came out of the LeDeR reviews, which have now concluded, above and beyond the two aspects that you mentioned?
Jackie O'Sullivan: I think it is patchy. There is a role for the new integrated care systems, which have to publish action plans based on the LeDeR findings. We haven’t seen those particularly, but there is evidence of some good work. In Yorkshire, they have set a target to increase life expectancy and narrow the gap, and it will be really interesting to see what comes from that. I don’t think there is one coherent picture. We certainly cannot see one strategy aimed at tackling some of these issues, which we know from LeDeR are problems.
Q36 Dame Caroline Dinenage: When it comes to the more preventive aspects, annual health checks have always been held up as a really good way of getting early diagnosis of illnesses that are treatable but could become much more serious if left too long. To get that annual health check, people with a learning disability have to join their GP’s learning disability register. What prevents people—especially people in those under-represented groups—from doing that?
Jackie O'Sullivan: I think it is lack of awareness in some cases. There is probably an assumption that if you have an education, care and health plan, you will be automatically enrolled, and that doesn’t happen. What we know is that the computer systems will not or cannot talk to each other. There are GDPR issues about data on younger people rolling into adulthood. I think that there are some structural issues there, and probably an assumption by a lot of people that they will automatically get the same treatment. We hear from people saying, “It was great until my child left school, then it suddenly all fell away.”
Some of our work around the vaccine campaign that we ran was looking at how people got on to the register. The GP forms were very complex, in some instances running to 80 pages, and required diagnoses that leant on syndromes and recognisable learning disabilities.
I think there is an issue, and an education piece to be done, with people such as GP receptionists. We hear anecdotally about people being told, “You can’t go on the register because that’s just for people with cerebral palsy,” so I think there is a bit of a case for looking at the whole of those issues and really trying to work hard.
We are doing some work with community groups in some areas. We are working with black and Asian community groups to co-produce easy-read documents in other languages, which we hope will encourage people to go on to the register. It is too early to know the impact of that, but I am hopeful about that sort of work, where we are able to work with the networks that those other organisations have, and bring them together with our understanding of learning disability and the learning disability register and why it is important, to try to crack this problem.
Dame Caroline Dinenage: Very briefly, going back to what you said about GP receptionists, when we were initially bringing forward the Oliver McGowan training, I often used to use GP receptionists as an example of the kind of gatekeepers that often put people off interacting with health and care services. They can be quite terrifying, can’t they? They can be gatekeepers sometimes. To what extent is that sort of training being picked up in primary care, particularly by those who are almost the first line of welcome when you go into a GP’s surgery?
Jackie O'Sullivan: It is early days yet. It is starting to roll out, and we are working with Health Education England to try to get that embedded, but I don’t think we have the evidence yet to show that it is having an impact. However, you are absolutely right; it will be vital to change the mindsets of the people who are the gatekeepers to health.
Q37 Dame Caroline Dinenage: Thank you very much. Ciara, could I come to you, please? I am keen to know how healthcare could be improved for people with learning disabilities.
Ciara Lawrence: Thank you for your question. I believe that all staff in healthcare need to do the Oliver McGowan mandatory training. It is really important that that happens, because it will not only change attitudes of staff but make them think about how they talk to and treat people. I believe that the way that it could really improve is through the Oliver McGowan training. I know his story, and it is heartbreaking.
I know that it could save a lot of lives if healthcare professionals did the training. There would be fewer preventable deaths, and we want to see that happen. We want fewer deaths of people because they are just so—they shouldn’t happen in the first place; no one should die because you don’t know how to talk to somebody. I believe that training will make a big difference.
Q38 Dame Caroline Dinenage: You are so right, and Paula McGowan would be so proud to hear that you have said that. She has worked so hard to get that training delivered. Thank you, Ciara. Can I ask you, what are your own personal experiences of the annual health checks?
Ciara Lawrence: I recently got on to the register with my local GP in my area. I had to fight to get it. I had to really argue my way and fight for it. I had to battle for it with my local NHS trust. I am finally on the register—we finally cracked it recently—and I was able to have my first annual health check. However, it took a media interview, with me on TV, for someone from my local NHS trust to contact me to say, “Now we’re going to help you.” It took things getting that far for me to get it. I am really glad it happened. I am really glad they reached out to me and I got it, and they helped me, but I shouldn’t have had to get to that point. I should have been able to have it before. However, I’m on it now and I’ve had my first ever health check and it went brilliantly well.
I got really good support. I met my GP. He spoke to me really clearly; he asked me questions. He ran loads of tests. He put in reasonable adjustments. Lastly, after my annual health check, he said to me, “I would like to do a blood test, just to check a couple of things.” So I said, “Okay.” I then said, “The only thing is that I have needle-phobia. I have needle-phobia; I’m needle-phobic. I’m terrified.” So we talked about what I would need to have in place to have that blood test safely and securely. We talked through everything and I said, “I’d like to have my husband in the room with me, as someone to support me,” and they said, “Fine.”
They then gave me a double appointment for that appointment, so we had lots of time to talk everything through. On the day, I knew that I had lots of time to ask questions and think about what was going to happen, and my husband was with me in the room, so I had him to talk to and he was distracting me. That was great.
The nurse was lovely. When we went in the room, she sat us down and we talked through what was going to happen. And she said to me, “If you’d like music playing in the room, we can have music on. If you just want to chat with me, we can just chat.” She made it really easy.
They also pre-prescribed me numbing cream; because I’m scared of needles, they pre-prescribed me that before the appointment, so I could take it to the appointment with me and put it on an hour before, so that the test wouldn’t be bad.
So, when I went back in for the actual test, it was great, because I was able to be so distracted I didn’t feel anything. And now the next time when I go and have that test, I won’t be so scared.
They put really small things into place that made such a huge difference to me. And instead of walking out crying and having a tantrum, I walked out smiling, because I felt empowered, I felt they had listened to me and they had put in place all the reasonable adjustments that I needed, and it was great.
I’m very lucky; I can speak up and I have a voice, but lots of people with a learning disability are not as lucky as me. When I go next time next year, I know what to expect and I know what I can ask for now; and through my career at Mencap, I know about reasonable adjustments, whereas if I didn’t work at Mencap I wouldn’t know about them. So I’m very lucky; I know about things through my work. I also know I had to fight to get it and I shouldn’t have had to fight, but I’m pleased where I am now, and it is a positive experience.
I am now actually working with my local NHS trust, because the preparation form that I got before the appointment wasn’t accessible. I didn’t understand it, so, I made a bit of a song about it on social media and my NHS trust got in touch with me and they said, “Why don’t we work together? Why don’t we make it better?” I’m working with them now, and it’s almost done; it’s almost at final stage. I’m very proud of it.
Actually, that shouldn’t have had to happen—again. But now it’s going to be better, which is great. However, it’s just about thinking if it’s easy for everybody, it’s easier for a person with learning disability. So, yes, thank you.
Dame Caroline Dinenage: Ciara, you’re brilliant. Thank you very much, Chair.
Q39 Chair: Can I second that? Ciara, you’re brilliant. And can I ask you a follow-up question? I hate it when I hear that people have had to fight to get what they should have had anyway. Do you remember how long it took?
Ciara Lawrence: It took three good years to get me on the register—
Q40 Chair: Three years?
Ciara Lawrence: About three years. And I kept saying, “I want to be on it. I want to have a health check. I want to meet my GP,” and literally I kept going, “Please, please, please.”
Originally I wasn’t on the LD register. When I was going to appointments at my GP surgery and I kept saying, “Please, please, please,” they went, “You’re not even on the register”. I said, “Well, what’s that?” I didn’t know about it until I was working on our Mencap Treat Me Well campaign and then I knew about it. So I went back and I said, “Look, I know I can be on this.” I got in touch with my NHS trust and I said, “Look, can you help me?” and they helped me. But I literally had to keep saying, “I’m a person with a learning disability.” So it was very hard, but as I say, I’m on it now. I know that I will have that health check every year now, and if I need to go to my GP between checks, I know who he is now and he knows me. I know all the staff there now and they know me. So yes, I think it is going to be really good going forward and I know I can go there and ask for reasonable adjustments when I have my appointments and speak up.
Again, I am only one person with a learning disability. I know there are lots of people with a learning disability out there who are not as lucky as me and do not have that voice. Actually, it is not about me and having my voice. We need other people with a learning disability to have that voice to speak up for their rights and we need that. So yes, thank you.
Chair: You’re right, and can I just say thank you for all that you are doing to speak for other people with learning difficulties, and for the work you are doing to make sure that they find out about their rights, too?
Q41 Mark Jenkinson: Maya, I want to ask some questions about autism diagnosis difficulties. Can you share with the Committee your experience of getting that autism diagnosis?
Maya Stretton: Absolutely. I am 19 now and I was only diagnosed with autism just before I turned 17, and the investigation into my autism diagnosis did not start until I had such debilitating health issues that they were trying to look for a cause. The whole process took probably 14 months, with my parents pushing the entire time and them actively trying to make sure I was getting this diagnosis to seek the support that I needed. Other people’s parents might not be as knowledgeable about how that system works and how to assist. My little brother got his autism diagnosis this week—I doubt he is watching; I hope he’s in school—and that has taken 14 months. That is a short period of time, considering, for getting an autism diagnosis.
It can take several years to get the diagnosis and get on to the autism pathway itself. I have been working with Cumbria County Council on looking at that to see if we can change it locally and make the process shorter, as the NAS have put in their written things, because it is taking way too long for way too many autistic people to get the right consideration. It is through diagnosis that you will manage to get the help that is available. You can’t access that without a diagnosis. That shouldn’t in itself be an issue—you should be able to access that help—but a lot of the time you need that written down so that it is acknowledged and you get the support needed.
Q42 Mark Jenkinson: What improvements would you like to see in the process? What were the barriers? I am a Cumbrian MP and my mailbox is full of correspondence from constituents who are unable to get education, health and care plans because of lack of diagnosis, which obviously is the same problem—
Maya Stretton: My brother will be one of them right now.
Q43 Mark Jenkinson: First of all, what were the barriers as you see them? What held that process up? Yours was relatively quite a quick process.
Maya Stretton: Yes, mine was quick because it was kind of at the height of lockdown as well, so there weren’t as many face-to-face appointments—we were doing most things over the phone or just forwarding it on from people—but I think the main thing was CAMHS and getting things moving forward with CAMHS. In a short assessment process, you have to consider that it is not very attainable unless you have knowledge of the process. I know that if you are not aware of the steps to take, it is going to take you significantly longer because you need to find out the information. That’s why I am also working with Cumbria to make an autism information hub. It isn’t out yet, but that is going to be a website that is accessible for family and friends and people pursuing the diagnosis to see the steps they need to take. It’s about helping people who don’t understand how to register the next things they need to do; they don’t know who it is going to, who they need to catch up with, or who they need to ask, “What stage is this at and how do I help it move forward?”
Q44 Mark Jenkinson: Would your diagnosis have been at the time that we had just changed mental health trust over to Cumbria, Northumberland, Tyne and Wear?
Maya Stretton: It was February 2021, the very start.
Q45 Mark Jenkinson: So just after that. Just out of interest, which council are you in now? Cumbria has—
Maya Stretton: I know, we’ve just split. My mum will be upset because she is part of the council, but I can’t remember which one.
Q46 Mark Jenkinson: Okay. What improvements would you like to see in that process?
Maya Stretton: I think they’re taking on as much as they can, but it needs to be more of a nationwide thing of letting people understand what they need to do, who they need to talk to, and how they set it up, because, overall, the entire assessment is taking too long. I appreciate that you’re getting certificates now. That cuts out about three or four weeks from getting your diagnosis, once they are sure that you have autism. That is helping my brother work on getting his EHCP now instead of once it actually comes through, because he got that officially this week. It is one of those things where you are trying and pushing, but you don’t know where you should be pushing and what you should be asking for. Unless you have someone to help guide you with that, you can’t figure out where you are meant to go and what you are meant to do.
I think the overall process is very lengthy and inconvenient for people who are autistic because there are a lot of face-to-face interactions and a lot of expectation. My brother completely shut down when he was being asked questions. He was asked, “Why do you think you have autism?” He said, “Dunno,” because he did not know how to respond to the eyes on him and the questions around it. Especially with anxiety and different mental health conditions being a co-occurrence for autism a lot of the time, overall the procedure is very stressful and long and it causes a lot of people more stress, which makes people go, “I might not pursue a diagnosis. I have managed this far. I am not autistic enough.” But everyone needs support in different ways, and if you can access that, that is all that matters. A diagnosis can be a door to accessing that support.
Q47 Mark Jenkinson: Your experience of needing someone with knowledge of procedure—in your case, your parents—is quite common. I find that those who have had that support end up getting to the point where they need to be much quicker—although it does still take quite a long time—and end up with better EHCP support
Maya Stretton: My mum used to be the headteacher of a special needs school. She helped massively with that because she had seen the process that other people went through to get that autism diagnosis. She helped with building the EHCP. They both threw themselves into it, looking at so many different books, finding out the general pathways, and asking questions. There were therapists at my mum’s school, who she was constantly asking about different things, and in relation to my health as well because I have a chronic illness. But we think that is because of the trauma of living undiagnosed for so long and trying to deal with everyday life as if I was neurotypical.
Q48 Mark Jenkinson: Thank you. That is really useful.
Tim, your written evidence said that women and girls with autism might be misdiagnosed with mental health conditions. Why do you think that is and how can we prevent it?
Tim Nicholls: Partially, as Maya has described, this is an incredibly complex system and it is different in every single areas, which doesn’t help. There is confusion around support. NHS England has just put out a new national framework, but I think we are at risk of that not being properly implemented because local areas do not have the funding, the resource and staff that they need to meet demand. In many respects, that leads, in particular, to impacts on autistic women and girls who seek assessment, because traditionally they are overlooked, quite often by professionals. There is lower awareness of the fact that autism is a condition that affects both women and men. If we think about the stereotypes around autism, although they are wrong for many different reasons, you will often notice that they relate to men and boys, so we have seen over the years a gender bias towards diagnosis for men and boys.
Autistic women and girls may—Maya gave a really good example of this—
Maya Stretton: I have stuff to add as well.
Tim Nicholls: I’m sure you do. Autistic women and girls may go through life masking. Society conditions us to respond in certain ways to certain things. The reality is that an awful lot of autistic women and girls, especially when they are diagnosed later on in their teen years, have spent really important years masking and then developed sometimes very complex mental health problems such as anxiety and depression alongside their autism. If it is okay, Chair, I think that if there is someone who is going to be better at explaining some of this stuff, it is probably Maya. I know that she has some things to add.
Maya Stretton: As well as being an activist for the autistic disabled community and LGBTQ+ things, I am also a psychology student. I am first year. In fact, my very first thing was about autism and how it is portrayed, and the fact that it is very clear that we have more autistic women but that we do not have the statistics to back that up, because of how little they are diagnosed. The traits are seen as different; it can present in different ways. If a boy is really interested in trains—immediately autistic. But women seem to be more interested in things such as music, books, animals and even bands because of how they are socialised. They go, “Oh, that is just being a teenage girl; that is just the usual experience.” You do not see the social struggles, because a lot of the time they will back down, agree with other people in their group and let them take that role. Or they will entirely copy and repeat what they see other people doing, as that form of masking—“Well, I can’t be seen as different, because different is wrong”—whereas in men it is seen as more socially acceptable somehow, which I do not seem to understand.
It is because we are told consistently that that is not us, that we are doing something wrong by acting in a certain way. We will hide that and cover it in every way that we possibly can, which is definitely why I got my autism diagnosis later on. I am currently reading a book by Chloé Hayden, who is an autistic ambassador from Australia and has recently been in a Netflix series. It is absolutely wonderful, but it very much echoed this idea that autistic women will present in slightly different ways because of a socialisation and because of the pressure that you are doing it wrong somehow—that you are being a person incorrectly. It is all right when men act that way, but because you are already a woman, you already have enough to deal with, so you cannot possibly have those extra struggles. You have to hide them, compensate and be as independent as possible, when really what you need is support, assistance and help, and there is nowhere to look for it and nowhere to ask until you have that diagnosis.
Q49 Mark Jenkinson: So is this a training issue?
Maya Stretton: In education and employment, I think so. I think it is a lack of a—I think I wrote down the term “neurodivergent-friendly environment”: having a space where it is okay and it feels all right to be yourself and have the things you need. That could be having sensory aids available and being able to do different things.
On my travels here, which was a four-hour journey, I even ended up really worrying about my outfit. I do not wear collared shirts, so the sensation and the fabric of it really concerned me, and I was adding a hoodie on top, so it might be a bit wrinkled, but I am not entirely sure. It is the idea that, in different environments, you have to blend in, camouflage and fit in with how that works. That is being so pushed into our heads societally and accidentally through socialising. It is just one of those constant issues—nowhere you seem to go seems to be the place you fit, unless it is with other people who are also neurodivergent. For instance, the young ambassador meetings are one place where everyone is in the same situation as me and we are able to openly be ourselves.
Q50 Mark Jenkinson: Thank you. Very briefly, Tim, how effective has the national autism strategy been at reducing waiting times for a diagnosis? Or has it not?
Tim Nicholls: If you look at the data that has come out of the NHS, it suggests that it has not been, because over the last few years we have seen a huge increase—around 40%—in the number of people who are on the waiting list. There are currently 140,000 people in England across all ages who are on the autism diagnosis waiting list—waiting for an assessment—and 120,000 of them have waited for more than three months. The reason I pull out that three months figure is that that is the length of time that NICE, the health watchdog, says is the maximum time that people should have to wait between being referred and being seen for the first time.
So we have a system that is fundamentally broken and is operating far beyond the expectations. The Government very clearly say that they expect areas to be meeting those guidelines. One good thing that has happened as a result of the autism strategy and of autism being included as a clinical priority in the long-term plan for NHS England is that a new framework, which I referred to earlier, has been published by NHS England. That tells ICSs and ICBs what they should be working towards, what a good service looks like in terms of workforce: “You have this many people in your area; this is how many of what staff you should have.” It is a good piece of work. We think it needs to be implemented everywhere.
The situation we are in at the moment is that the national autism strategy funded diagnosis work in NHS England for the first year, so it has funded the development of that work, and that has given you a framework that could give you some very well structured services, but they would still be way behind and have huge waiting lists. What we needed from the further years of the autism strategy was a comprehensive plan to fund an increase in capacity for those services, so that you could tackle the backlog.
At the moment, we have, potentially, if it is implemented, a better structure but still massive waits. The potential, if the autism strategy puts in more funding from Government, is that you could really start to tackle those backlogs. We are disappointed that a second-year implementation plan has not come forward from the Government and that this, as one of the biggest issues facing autism at the moment, has not seen any investment in year 2 in terms of doing that. Quite simply, you will not tackle the hugely long, unacceptable and damaging waits that autistic people go through in order to get their diagnosis, unless there is more resource in the system. We have tried everything else. It is a case of money and funding for those local areas. Every ICB up and down the country is struggling.
Q51 Mark Jenkinson: Thank you; I appreciate that. I now have a couple of questions on employment and will come to Ciara first. What difficulties do people with learning disabilities and autism face when looking for and staying in work?
Ciara Lawrence: People with a learning disability face many barriers when it comes to employment. It is attitudes of jobcentre staff that really we have found very difficult, and attitudes of employers, because they don’t know what support they can give an employee; they don’t know what benefits they can get from the Government to help keep and sustain people in employment. I know that only 5% of people with a learning disability known to their local authority are in work. That’s a really shocking number; it needs to be better. Some employers don’t understand what a learning disability is and how to support people. Access to Work is too difficult to use; it’s a really hard system.
When I left college many years ago and wanted to find a job, I went to the jobcentre. My mum was there to support me. She took me to apply for jobs. She supported me at interviews. And I got nowhere. Employers just didn’t know what a learning disability was. They asked me about my life and what support I needed. They were not able to provide it, and that stopped me getting my foot in the door.
Unfortunately, we really have to push an attitude change to employers and say, “Actually, if you put in place small things, like reasonable adjustments, people can do a really good job; they work really hard.” Employers just don’t know, so they have to change their attitude.
I have been very lucky through my career at Mencap. I have been there 22 years now and have had lots of different jobs in that time. I have climbed the ranks at Mencap; I am on the leadership team now and I have wonderful support in my leadership role. But it hasn’t happened overnight; it has taken 20 years to get where I am now. But I have kept battling at it; I have kept working hard, and I have had the right support. I am really proud of where I am now and what I have achieved. But other employers just don’t know what support they can get to keep disabled people in employment.
Employers need to have a better understanding of what a learning disability is. We need to help Access to Work to make it better, so that people can get the support they need. People also want to progress in their careers. They might want to do new things. They want to get promoted, but they have to have the right support. Progress has to be accessible. We have to have accessible documents being made. We need accessible information. We need time to understand. If those things were put into reasonable adjustments and people given the right time and support, people could be promoted, do new things and have careers. I am very passionate about that.
When I started at Mencap 22 years ago, I was a part-time typist in an office. Now, I am on our leadership team, because I kept saying, “Listen to me: I will work hard”, and I have been given those opportunities. I am very proud of what I have achieved, but I know that I am just one person with a learning disability. There are about 1.5 million people with a learning disability living in the UK, and not all of those people are as lucky as I am to have that voice and to be able to speak up.
Employers need to know about reasonable adjustments, and they need to know where they can get support from. If they had that, they could employ people with learning disabilities, because they make brilliant employees. It is just about getting their foot on the ladder and knowing what the first stage is. Also, the application process when you are applying for a job can be really difficult. I think I filled in about 100 application forms when I was looking for a job. They were really hard, and my mum had to keep supporting me. If they were easier, I could have done it myself, but it took someone to support me and say, “Let’s keep doing this together”, for me to get somewhere. Again, I’m lucky that I have had that support, but not everybody is as lucky as me.
The world needs to change, and society needs to change. People in society need to know what a learning disability is. People in society need to understand what reasonable adjustments are. People in society need to see us in the media. If they saw that and saw a positive representation of us, there would be more jobs for us, there would be better healthcare for us, and there would be better attitudes towards us. But it is still society that stops us. For example, the other day I got a letter in the post, and it was really hard for me to understand. I had to say to my husband, “Can you read it and tell me what that means? I don’t understand.” It took him to explain it to me for me to go, “Why didn’t they say that? Why does it have to be so hard?”
It is still society that labels us. It is still the world that goes, “You need to fit into us.” Actually, no, you need to fit into us, too. If society changed its attitudes and the world changed its look on us, the world would be a better place. Through the plan, we want the UK to be the best place in the world for people with a learning disability to live happy, healthy lives, and I really want to see that happen. I want to see the UK be more accessible for us. I want the UK society to change its attitude. If that happened, I would be very happy. I know we have started to make real change, but there is still more to do. I want to see that happen, and I am very passionate about it.
Chair: Can I just interrupt, Mark? Any employer who has any sort of prejudice about people with learning disabilities should listen to that and learn, because any employer would give you a job, Ciara.
Q52 Mark Jenkinson: I agree. I wanted to ask, although I think you have answered this, what support people need to overcome these difficulties. Actually, what you have just spelled out is that it is the employers who are the people who need support—that is what I take from your answer.
To deviate slightly, you talked about going to the jobcentre. The Department for Work and Pensions has done a lot of work on disability confidence and Disability Confident employers. Do you think that is having some effect on employers’ perceptions?
Ciara Lawrence: I think so. I think things are getting better, but there is still a lot of improvement to be made. I think jobcentre staff need proper training about learning disability, because then they would know how to talk to people. I found it very hard; it was like banging my head on a table, going, “No, you need to talk to me in a clear way, please. It shouldn’t be this hard.”
Things have got better, but when we kept going back and saying, “Look, someone here needs to help us,” at the final hurdle—a year after we had first gone—we were told about the disability employment officer. Actually, had they told us when we first went that there was a disability job officer who could talk to me, we would have gone to her, but we were not told until a year later that she existed. She introduced me to Mencap, and the rest is history. But I had to struggle for so long. We did not get signposted to any support.
My mum was literally my cheerleader going, “Come on, I will help you speak up,” because my local authority would not support me. When we went to the local authority, they went, “You’re too mild—go away.” Since the age of 16, when I left my special school, my mum has had to be not only my mum but my cheerleader, my job coach and my support worker, and have my back. It has been really hard. Actually, again, if people just had the right training and the right education, I could go and say things for myself, but I have had to have support from my family because I could not get support anywhere else. I was always told that I am too mild, but actually they have just made an assumption about me. They can only see me. If they came and spent time with me, they might see the things that I find hard and then change their mind. Sorry, that was a bit off the topic.
Q53 Mark Jenkinson: No, that is really helpful; thank you. Maya, I’ll remind you that the original question—I deviated slightly—was about difficulties faced by people with learning difficulties and autism when looking for and staying in work.
Maya Stretton: One of the main things is the co-occurrences with mental health and chronic illness. I have only ever had one job, so I do not have as much experience, due to being quite young still and having such serious health needs early on in my teenage years, but when I had that job I was struggling immensely without having the accessibility. I ended up going and becoming self-employed to ensure that I had the right assistance and the accommodations that I needed—I was able to stim and to have the lights down—to work regularly.
One of the bigger difficulties is bias and lack of accommodation when actively seeking work. A lot of the time, CVs will be overlooked and disabilities will be seen as off-putting. It is disgusting that that is still happening. Once again, it is lack of understanding. Having an interview face to face might be too much. Maybe someone would prefer a phone call. Maybe a phone call is too overwhelming and too much sensory-wise. So there will always be that need to understand. People are individual, and everyone benefits if there is more accessibility.
I am sure that neurotypical people can struggle with harsh lighting as well, and with anxiety being sat in an office having an interview. I feel like if we were more open to making these reasonable adjustments, once again, and if they were actively given out in earlier stages, people—especially autistic people—would be able to look for jobs more, and they would be able to find them. When you are looking for somewhere, you are specifically going, “Okay, how accessible is it? Do they say anything about disabilities? Do they say how they would respond to that?”, because you do not know if you are going into a safe environment where you will be understood.
Autistic people staying in work are unsure where to go for these adjustments and accommodations. They will be content with what they are doing—they will understand what the job is—but there are the little things, like moving desks to somewhere where there isn’t a bright window, or an annoying pencil sharpener, although I doubt that happens any more because a lot of stuff is on computers. It is about just having those small things where you can go, “Hi. This is affecting how I’m working and I would prefer if I didn’t have to deal with it.”
You don’t have that first step. You don’t know who to go to for that—some kind of advocate, or someone who understands, who is nominated in the office that you can go to and say, “I am really struggling with this specific thing and would like help with it.” That wouldn’t just benefit neurodivergent people. It wouldn’t just benefit disabled people—I don’t think autistic people are disabled. I think how things are run is disabling for autistic people. I myself am disabled, but I think that is unrelated to my autism diagnosis. My autism is just who I am and how my brain works.
I feel like it would benefit neurotypical people, and it would benefit able-bodied people, to have someone they can go to and go, “Look, this is becoming an active problem and I need some consideration—I need validation that this is reasonable, that these are things that can change and will change to improve my chances working here, and my ability to pursue a job.”
Q54 Mark Jenkinson: Thank you; that’s really helpful. Jackie, and then Tim, how will the proposals in the Health and Disability White Paper open up more work opportunities for those with learning difficulties?
Jackie O'Sullivan: There are some positives in there. The idea that you might get more specialist employment support is really welcome. We find that the DFE-funded supported internships are more effective than the Work programme model, which is shorter term and more target-oriented. Anything that we can do to make the benefit scheme more supportive of people in work would be really welcome.
If this is genuinely a drive to get long-term employment possibilities, with the financial benefits that that would bring to the economy, then I think it will work. If it is a short-term savings offer, then that is just going to fail. As Ciara said really beautifully, there is a proposal for job coaches in there; again, that could be really brilliant, but we need to make sure that they get the right training and really understand learning disability.
There is probably something that needs to come out in terms of building trust with people with a learning disability, many of whom will have been on benefits for a long time now—decades, potentially. Through that time, they have had lots of changes. They have probably been shoved on to training schemes and various other things that were not accessible and were not suitable. They probably had to reapply and have been reassessed and had really long complicated forms. At various times, they have possibly been shouted at for not filling them in on time, with an element of what must feel like bullying. I think there is a long way to go to build back that trust in people. At the moment, people are really fearful of anything that might impact their benefits.
We have just done a piece of work with NDTi on work. That has shown that for 45% of people, the barrier they see is the benefits system. Even of those people in work, 20% said that the benefits system was the worst aspect of their job, which is quite interesting. There is a long way to go to get the trust that we need to really make this work, but there is some real potential in there.
Q55 Mark Jenkinson: What is it about the benefits system in particular that creates that fear? Do you have any concerns about proposed changes to the benefits system in the White Paper?
Jackie O'Sullivan: It is the element of any change, where people see there is the potential for money to be taken away from them. We have people who are still on legacy benefits, sometimes because they are fearful of going on to the new system, in case they are penalised.
Q56 Mark Jenkinson: Am I right in saying that in most cases they are not penalised?
Jackie O'Sullivan: There are transition protections, but sometimes people are. We employ people sometimes to sit on our steering groups and things like that—it is ad hoc work, but still important and significant. We find that we need to put in a huge amount of support to help people with their benefit reassessments every time they declare income, to the extent that some people will say to us, “I want to do this in a voluntary capacity; I do not want to be paid,” because it is so traumatic.
Q57 Mark Jenkinson: Are there any proposed changes that you are specifically concerned about?
Jackie O'Sullivan: It is about making sure it is accessible, and it is about making sure that there is a real emphasis on building trust and supporting people into work. It would be around making sure the job coaches were well paid, making sure there was a clear plan for any transition and making sure that, as Ciara described, any assessments are based on what people can do and being really supportive, rather than penalising people.
Q58 Mark Jenkinson: Tim?
Tim Nicholls: I think Jackie is right. The issue here is one of employment, and that is much bigger than the health and disability White Paper is ever going to be able to fix. There is not the big picture around it. That is why one of the very first things that I brought up in my very first answer was that the missed opportunity in the national disability strategy was to have proper thought and strategic programmes that really go behind driving up employment among autistic people and people with a learning disability.
We know that only 29% of autistic people are in any kind of work—that is what the latest data from the ONS shows us—and we know that most autistic people really want to work, but all the barriers that have already been outlined are what hold people back. The notion that the health and disability White Paper is the thing that is going to do it on its own is understating the magnitude of what needs to happen.
As Jackie was saying, there are some good bits in there. This may well answer both your questions at once, although I think some of them potentially also then raise cause for concern. For example, the proposal to remove the work capability assessment has been met generally by people as good; it has not worked, so it is good that we are moving on from it. However, there is a big “but” that comes along with this, because something else is going to replace it, and is that something else going to be any good?
I would say that at the moment we are very concerned by the proposal to use whether someone qualifies for any level of PIP as the decider for whether they would also qualify for the uplift under universal credit. Fundamentally, PIP is there to do a different thing than universal credit. PIP is not a work-related benefit, and it is nothing to do with your ability to work; it is about the impact of your disability on your day-to-day life and the extra costs that that incurs. We risk really muddying the waters of what financial support is supposed to be there to help with. That, I would say, is a big concern for us.
However, I think there are some other good things. The idea to pilot specifically trained assessors within the benefit system is a really good idea. We have been calling for it at the NAS for years. We know that assessor understanding is something that autistic people consistently tell us is not good enough, so that is great. We strongly encourage the Government, when it is piloting that, to pilot that for autistic people to make sure that their experience is better.
One really good thing that was mentioned in the most recent White Paper was some work that we have been doing with Jobcentre Plus up and down the country to pilot accreditation within jobcentres to make sure that all staff have the right level of training. That goes from the security guard on the front door all the way through to the disability employment advisers. The level of training there is important. Every single one of them—in exactly the same way as with a receptionist at a GP practice, as we were talking about earlier—can completely dictate how an appointment is going to go.
I heard from one person—a young-ish guy—who found the harsh lights at the jobcentre overwhelming, so he went in with his hood up and headphones on. He did not hear the security guard on the door. The security guard then grabbed him, and he was incredibly sensitive to touch. That was a massive shock, and he had a meltdown. It meant he was not able to go to the appointment, and it meant he was physically restrained. That was a terrible outcome for him. Training would solve that.
We want to see some of the great stuff that is being developed and piloted in areas such as Slough, Gosport, Musselburgh and Paisley rolled out across the whole country. That is a real opportunity to transform the gateway into support for an awful lot of autistic people.
Mark Jenkinson: Super; thank you. Thank you all for your answers.
Q59 Chair: We have one minute left for this panel. Maya, something you said really struck a chord with me. You were saying that during the pandemic, CAMHS appointments were all done online or on the phone, which was actually quite helpful for people with autism. Then you said, when talking about job interviews, that if they could do an interview online, by Zoom, it might make things easier for people with autism. Should we be encouraging more tailored services and making sure that—whether for interviews, doctors’ appointments or appointments with CAMHS—there is some mechanism whereby people can express a preference?
Maya Stretton: Yes, absolutely. I have talked to people who have been trying to get their autism diagnosis, but because of hearing difficulties have had extreme issues contacting GPs—the website for doing appointments shut down after the pandemic, so they could only do them via phone, which caused a lot of hurdles. I have friends who struggle with anxiety about organising appointments. They are 19 now and have never had any job experience. They have gone to several jobcentres to talk to neurodivergent staff, because they have struggled so much with access and those hurdles—because it is not, “How can we make this easier for you?”
Doing things online would work best for me, because of my sensory preferences. I like being in a familiar place. I like having comfort items. Even now, I am wearing compression-related things underneath my outfit, to help to soothe me more and to help with sensory issues. Everyone has their own specific needs, autistic or not, and it is about being able to ask prior to interviews—even just saying, when submitting your CV, “This is what I require, what I need”—and not having to be a nag or seen as a negative, so you are put further down on the list of people going for the job, because interviewers think, “Oh, they are demanding. They need more. We can hire someone who is lower maintenance and neurotypical.” It is about making sure that there are fewer barriers and that the communications are however works best for them.
Chair: Thank you. I think all of us here just want to see autistic people supported into the job market. We know how important it is that we harness your skills and give you opportunities. I thank the panel for their evidence; you have all been great. If there is anything you would like to follow up in writing, please feel free to do so. Thank you.
Examination of witnesses
Witnesses: George Appleton and Jim Blair.
Q60 Chair: Welcome to the second panel of this afternoon’s meeting. We have George Appleton, Head of Policy at Care England, and Jim Blair, Consultant Nurse, Learning Disabilities, working for the West London NHS Trust. I am sorry, but we will be short of time, so expect colleagues to rattle through their questions at what I am going to describe as an alarming rate. I will start by asking you, George, how confident you are that the Government’s plans for adult social care reform will give people with learning disabilities and autism the support they need.
George Appleton: To start at a high level, speaking broadly, the adult social care sector, including older adults as well as younger adults with a learning disability and autism, is very much on a precipice right now. By that, I mean that the growing demand for care services is likely placing individuals who require care and have support needs at growing risk of not being able to access the right care at the right time.
Care England and the national learning disability charity Hft conducted a survey last year entitled “Sector Pulse Check”, the results of which were published in March this year. We found that, due to cost pressures in the sector, one third of all adult social care providers had considered exiting the market over the course of 2022; for smaller care providers, that number grows to half of them considering exiting the market in 2022. It is an enormously concerning finding in that respect, which is naturally why the £7.5 billion injected by the Chancellor through the autumn statement was a welcome boost to the sector.
However, that £7.5 billion is not specific to the learning disability sector and is spread across the entirety of the adult social care sector. That also encompasses two years of reforms and various Government plans, including being split between both adult and children’s services and creating wider initiatives such as 200,000 additional new care packages and discharge. If you consider demography and inflation alone, the Local Government Association put the estimates at around £2 billion per annum, so you can quickly see that that £7.5 billion becomes insufficient in its ability to deliver a sustainable sector going forward.
The Government recently launched their “fair cost of care” exercise. That was aimed at being able to establish a common understanding of what care costs are from a local authority perspective, as well as from an independent sector provider perspective. This exercise totally omitted the learning disability sector, so showed a lack of understanding and consideration of what that exercise could have done for the learning disability sector. What Care England’s analysis of the “fair cost of care” exercise uncovered was that, over the course of 2021-22, local governments in England were underfunding care by £2 billion per annum, so there is an enormous gap between what it actually costs to provide care and the rate being paid by local authorities.
The most recent Government publication was “Next steps to put People at the Heart of Care”. That very much overlooked the learning disability and autism sector once again. There were welcome initiatives within the plan, particularly from a workforce perspective. Many adult social care providers will tell you that the workforce is their No. 1 concern right now in terms of recruitment and retention rates, but the White Paper recognises the importance of training, learning and development. It is a welcome step forward.
However, equally concerning was the fact that the pot of money used to develop the workforce going forwards has now been halved. There was originally £500 million on the table. That now sits at £250 million. The money taken off the table was to ensure the workforce’s wellbeing going forward. If you look at it from a helicopter perspective, what you see is an underlying tension: the workforce is being asked to do more from a training, learning and development perspective, but their wellbeing is not being safeguarded in the way that it should be going forward.
Q61 Chair: Can I just interrupt you? A couple of times you have come up with evidence that people with learning disabilities have not been included or that they have been ignored. Why have they been overlooked?
George Appleton: I think it is a lack of central Government understanding of the nuances of the adult social care sector. You only have to refer to the likes of the covid-19 pandemic and the response of Government. When you look at the blanket imposition of various policies during the pandemic, they were mainly specific to older people and residential care, when the sector is of course so varied in its nuances, such as the provision of care for younger adults in supported living settings, home-care settings and day-care centres. It is multifaceted. I think that lack of central understanding really comes through in the translation of policy.
Chair: This Committee had quite a lot to say on the subject of people with disabilities.
Q62 Dame Caroline Dinenage: I draw everyone’s attention to my declaration in the Register of Members’ Financial Interests. Do you think that this is not just a Government problem but a cultural problem? When anyone talks about adult social care, people automatically think they are referring to old people, when half of local authority spend is on working-age adults. How do we overcome that because, if you turn on the TV and someone talks about spend on adult social care, they refer to it as care for older people?
George Appleton: I completely agree with you. I think that what it now takes is placing those who represent individuals with learning disabilities and autism or, even better, those individuals themselves at the table. Those who have lived experience and those who represent those with learning disabilities should have an equal seat at the table.
I refer to the Government’s paper “Building the Right Support Action Plan”, which was published in July last year. When you read that paper from a Care England perspective, the voice of independent sector providers is totally unheard, despite adult social care providers being the centre and the solution to many of the problems outlined in that particular paper, including the particular issue of avoiding an over-reliance on hospital in-patient settings and creating a reliance on community-based support, which we know can improve outcomes for individual with particularly challenging behaviours, such as those with learning disabilities and autism.
As representative bodies for those individuals with learning disabilities and autism, we are not afforded the same seat or the same voice that the likes of commissioners and regulators are afforded at that table.
Q63 Chair: We heard about Ciara’s mum, who was filling in job application forms for her, and we heard about Maya’s mum, who was a special needs headteacher and was making sure that Maya eventually got the support that she needed. How are we making sure that those mums are around that table and that their voice is being heard?
George Appleton: I think it is really important that those voices are amplified, whether through advocates or by placing them in central roles at decision-making tables—at local, regional and potentially national levels. Audiences like these are fantastic, because they bring individuals with a voice to the table, and that voice is so often lost in the conversation of bureaucracy, politics and what is doable within the financial constraints of government. We need to look beyond that, and drive at outcomes rather than bureaucracy and the measures used to achieve those outcomes.
Chair: Thank you.
Q64 Dame Caroline Dinenage: Jim, I am going to turn to you. You heard the evidence about health. You were here for our earlier panel, weren’t you?
Jim Blair: Yes.
Dame Caroline Dinenage: What are the barriers that prevent people with learning disabilities and autistic people from getting a timely diagnosis?
Jim Blair: In terms of diagnosis, I think there are a number of problems. Some of that is that people are getting very confused, currently, between learning disability, learning disability autism and autism on its own. Those are not to be blurred or merged together—that is highly problematic for each set of individuals in those categories. Unfortunately, that is happening.
In terms of diagnostics, it is often about people not wanting a label. Often people say, “Labels are for jars, not for people,” and they are correct. That is true, and I totally support that. But what you have is what you have; who you are is who you are. The fact that you have a diagnosis one day that you did not have the day before does not mean that it did not exist—it just means that you now have it.
I think we need to focus on celebrating what people can do and their abilities and skills. For example, many people think that the last time the English men’s football team won the World cup was, obviously, West Ham United in 1966—I jest. It was actually in 2002: it was the learning disability England football team, which won it in Japan. Most people do not know that. People do not celebrate or showcase those talents and abilities. They often see a diagnosis as a problem. I see it as something that is part of who you are, but it is not solely who you are. I am a patron of DanceSyndrome, which is a wonderful charity that celebrates the abilities and talents of people through dance and elements of that. The fact that you have a diagnosis is the fact that you have a diagnosis.
The problems of getting a diagnosis—to come back to that part of your question—are largely down to the problems of training the professionals, their confidence and, sometimes, their competence. As I mentioned, there is also the desire not to give someone a label—a feeling that that in some way impedes their development. For example, in paediatrics, the tradition is to call something “global developmental delay,” which does not really exist. That is a fallacy and a false dawn for many families. Indeed, in my preparations for coming here today—I will submit the written statements from families—that was one of the key things that families said. They thought that their child would get better—“delay” suggests that. Well, it does not. That is a misdemeanour. That does not help.
I think that there is also a lack of training for professionals in understanding what having a learning disability is and is not, and that is highly problematic in the diagnostic process. It leads to people being misguided. For example, when you first meet someone, one of the easiest ways to work out whether they have a learning disability is to ask them where their heart is, how big it is, what it does and what happens if it stops. First, if they are not annoyed by that question, they are more likely than not to have a learning disability. Second, they really will not know where it is. They may point to various parts of their body. They do not know. They might say it is the size of a football. When you show them that it is the size of your fist, that it is slightly to the left of your chest, that it pumps blood around to help you work—a bit like a petrol car engine—and that the blood makes your body work, they get it. That is what we need to work through. The diagnostics are really important, but sometimes people are very reluctant to do that.
Q65 Dame Caroline Dinenage: Yes. We heard from the National Autistic Society that investment in reducing waiting times is minimal. Have you seen any progress in tackling waiting times?
Jim Blair: No, there is a great lack of progress on that. One of the key factors is that it does take a long time. As someone who has done the diagnostic training in autism, and has the licence to do so, I know that it takes a long time to gather the information to ensure it is correct for that person and their family members. There are ways to do that quicker using screening tools. By that I mean that people who are much more likely to have autism can be fast tracked, for want of a better phrase, so you get to the essence of their situation. It is also about understanding that you can be a bit more creative with your diagnostics. You can look at the clear things that someone has. Do we need to go through the full battery, or can we see where someone really is already?
To come back to your earlier question about the trauma of diagnostics, we often find that adults with a learning disability weren’t picked up earlier, and you don’t need to take them through the whole battery of diagnostic assessments. The question I gave you earlier about where your heart is is a clear indicator, and I use that in my practice all the time. That lets you know where a person’s cognitive capacities and abilities are likely to be.
Q66 Dame Caroline Dinenage: Thanks. I also want to talk to you about how we adapt health services to meet individual needs. We have heard a lot about that this afternoon. What are your thoughts on that?
Jim Blair: To be honest, the reality is that nothing will change in 20, 30 or 40 years’ time—it hasn’t changed an awful lot in the last 30 years, other than, sadly, many cases getting an awful lot worse. There is a way this can change. We need to look back to what we had from 2001 onwards, when we had a national co-director for learning disabilities. We really should have a balance of power shift, and if we do that, we will get care right. We should have three national co-directors for learning disabilities—one who has a learning disability, one who is a family member, and the third who is a professional. Doing that would shift the balance of power. Far too much is in the hands of the professionals, and that is not where it should lie. We are not the experts; we are part of the expertise, but we are not the full experts.
We should then have a quality improvement panel made up of 34% family members and 51% people with learning disabilities, and the final 15% should be made up of professionals. That national panel would also look at the development of services, the planning of quality improvements, the monitoring, the diagnostics—all the issues we are discussing here today. It would have the responsibility and accountability for delivery. That, for me, is what would work.
I know that works because I have done it in two large acute hospitals I have worked in in this town—London. I know it can work, and I know how we can make it work. We can do that not just for people with learning disabilities. It could be for epilepsy, diabetes, dementia—any challenges. That alleviates the problems that sometimes exist in the political sphere of party politics and can sometimes get in the way of things. It would allow things to take shape for those who know where the challenges are. You have heard about many of them today, as well as about the solutions.
Q67 Dame Caroline Dinenage: Going back to basics a bit, we have heard a lot today about reasonable adjustments. Ciara spoke a lot about reasonable adjustments and how that had immeasurably changed her interactions with health and care services. The Equality Act talks about reasonable adjustments; the Autism Act talks about reasonable adjustments. We hear about that all the time, but at a practical level, what does that actually mean? What does it look like?
Jim Blair: One of the first things I did in the large acute hospital I worked in as a consultant nurse in learning disabilities in 2008 was to get rid of the visiting time for patients on wards. I just disbanded it. There was no point in it. If you are seeking to understand someone who has no verbal language and a limited understanding of the environment they are in—they are now in a really strange whirlpool of health words, jargon and all the rest of it, and they don’t really understand the kit and kaboodle beside them—and if you do not have those who know them best, you are not going to deliver the care that is required. That is what I would suggest is really good.
I had core reasonable adjustments made in both the London hospitals I worked in recently. It is about actually making sure these things happen and enforcing that. You really have to have significant leadership. You need to have learning disability nurses in significant positions of power to change things, and to lead, shape and direct the services. They should not just be in junior posts. That doesn’t work as well as it could do.
In terms of making reasonable adjustments on the ground, we need to embed the powers I have talked about within services to create the change. In order to make effective reasonable adjustments for those with learning disabilities and their family members, we need to have learning disability nurses in all settings and all areas. That is the wish of families and the people themselves. We know that there is a shortage of numbers, but we can see exactly where they can be placed. With will and intent, that can occur.
Q68 Dame Caroline Dinenage: What is at stake here? We hear about reasonable adjustments, person-centred care and individual-centred care, and we have all read the horrific LeDeR reports of what happens when things go wrong and the impact on life expectancy that comes as a result of that. If we can get right the person-centred care and reasonable adjustments, what is at stake in terms of the diagnostics? How much change could be made?
Jim Blair: Massive changes. The diagnostics could be linked into annual health checks and loads of other things as well. What we have seen since 2013, and, if my memory serves, in the LeDeR reports that started in 2015, is a shortening of the life expectancy of people with learning disabilities. That will carry on. We have the solutions. It is about whether there is the genuine political will, and the will to make the structural changes that I am suggesting with that shift in the balance of power. If that does not happen, we will still be coming to these Select Committees, year after year, and seeing reports of abuse and neglect, as well as poor training, poor understanding and poor interpretation of needs.
We need to flip the narrative and ask what the problems are really. Health inequalities are really a matter of communication difficulties and challenges. Part of it is health professionals sometimes not being able to tune into somebody’s frequency—a bit like a radio that crackles. You actually need time to tune into someone’s frequency. You need to spend time to understand and realise that even salt looks like sugar—all that you see is not all there is. If you want to save lives and stop people dying, it really is simple. If I, as a 55-year-old man, get up and smack my head against the wall, would you think, “Oh, that is just what white guys who are 55 and sit in front of Select Committees do”? No, you wouldn’t. If you threw a learning disability into that, you would go, “Ah! It is the learning disability that made Jim do that.” Well, that is crazy, isn’t it?
Think about a physical, biological or mental health reason behind that behaviour change, and what someone is trying to show and demonstrate through a different form of communication. By doing that, we will then reduce the health inequalities and address the health gains of people by changing the narrative. If we set it like that, we will save lives. The bottom line is that it is about saving lives, because life expectancy is going down. More and more people are dying avoidably and unnecessarily, as well as having poor life experiences in a variety of care settings.
Q69 Dame Caroline Dinenage: I have one more question before the Chair slaps my legs for going on too long. We also heard Ciara talk about the Oliver McGowan training; have you taken part in that training, and what impact could it have?
Jim Blair: I have. I think the impact is good. Mandatory training is an absolute must. I think a very cautious, salient reminder is that it is very good for new-starters, receptionists, admin staff and many others—it is a great introduction—but it will not and should not replace the training that is built with and for those people who are using the service. For example, in my own practice, I always train, teach, write and publish with people with learning disabilities and their families—as you may have read in some of my submissions. I build the training with them. Recently I did that in an in-patient forensic setting, with someone who was actually a patient at the time, but was training staff about how to work with them and getting paid to do so.
The training needs to be separate for separate people. For example, the training I provide in a forensic setting is very different from what I provide in primary care. The needs are not the same. So while I think mandatory training is good, we must not think that it will be a panacea. It is a vital stepping stone, but you must still have bespoke, tailored training for those areas, and must always involve lived experience—be that sibling or parental experience, or the service user’s own lived experience.
Q70 Dame Caroline Dinenage: Going back to the mandatory training, phase 2 does include experts by experience—people with lived experience, people with learning disability and autistic people. That is important, right? It is important not to just do a tick-box exercise on a computer screen.
Jim Blair: Absolutely. It is vital. I have been a nurse for the best part of 30 years; I have a window into someone’s life, but I do not have the whirlwind, 24 hours a day, seven days a week, 365 days a year life experience that they have. I have the honour and privilege of working with those individuals, but only for a sliver of time. I am very cognisant of the fact that I have only that window. Without their knowledge, you cannot drive training forward. Even so, there needs to be a third tier, which is that training needs to be tailored to the environment in which you are working. As well as those things that are good components for us all to have, the third element, going back to my previous point, is that it needs to be tailored. It cannot just be left at that for those who are going to be working more closely with individuals.
Q71 Chair: George, did you have anything you wanted to add about the Oliver McGowan training? We heard from Ciara earlier. We have just heard Jim talking about it.
George Appleton: I will just add a small point to that. What is vitally important in the context of this is that we need to ensure there is actually a workforce there to be able to deliver the training itself. Right now, just in social care, there are 165,000 vacancies. If you scale that to healthcare, that number goes up to 300,000. That is roughly the equivalent size of Newcastle as a population. We effectively need 300,000 Geordies picked up and put into roles within the health and social care sector. That is an enormous ask, and trying to do that both domestically and internationally is really challenging. I think there needs to be a review of what the blockers and barriers are, to ensure that we can get the right number of people and the right people with the right values into a social care or healthcare-related role.
One of the biggest barriers from a social care perspective is pay. Care England and the national learning disability charity, Hft, in our “Sector Pulse Check” report, recommended that the Government should consider introducing a national minimum wage for care workers that sits above the national living wage and is tied to NHS band 3 to create a greater sense of parity between both health and social care, but also to help independent care providers attract more staff, and more of the right staff, into roles. That would be my contribution to the discussion.
Q72 Chair: Thank you. Jim, you made reference to learning disability nurses needing to be in the right grade of posts, but you also said that you know where they need to be placed. Can you expand on that?
Jim Blair: Yes. Where they need to be placed is within all healthcare settings—primary, acute and overall throughout the wards. In the hospitals that I worked in, I have had learning disability nurses working in acute respiratory care, for obvious reasons. We heard earlier, and we know from the LeDeR report, that aspiration pneumonia and other respiratory conditions are more prevalent in early deaths of people with learning disabilities. Cardiac wards, same-day admission units, A&E, in general practice, as I said, and within social care—really it is wherever people with learning disabilities are. If we are really serious about stopping the deaths of people with a learning disability at the avoidable rates currently, and we are trying to increase life expectancy rather than seeing the perennial decreasing, that is one central factor that must happen. We also need to know what we want from these nurses. I know what I want from learning disability nurses and the service that I work in. I know exactly what work we are going to do with them.
Wherever you are and whatever setting you are in, it is “Give me five”. It is as simple as that. The first one—the thumb—is addressing diagnostic overshadowing, which is a hidden killer for people with a learning disability. That is when people put things down to the disability rather than exploring pain, physical health issues, mental health traumas and other issues I just highlighted. The second finger is around the health issues as they present in people with a learning disability. It is being a health detective, if you like; it is tuning into someone’s frequency, understanding what is behind what is happening and making sure that those required adjustments are done in a timely manner.
The middle finger, the central pillar of it all, is involving those in the care evolution that are at the heart of the care—that is, people themselves and their family members—in the policy design, development and delivery, as I suggested, in that panel. The fourth element is education and action. We are never going to have learning disability nurses all over the place. Many people think that that could occur—it is not going to. But what we do need is to have more places, and effective places, and that is certainly something I have done. Over the last 15 years or so, I have created over 22 posts for learning disability nurses across this country and elsewhere. You can create it with your articulation of the need. Enabling people to mirror a model of behaviour will lead to other people having the higher skillsets that they need, but that needs to be in practice and in real time.
The fifth element is an acute understanding of the Mental Health Act, the Equality Act, the Human Rights Act and all the other legislation and how they impact on practice. That is for all. I do that as an 8d, but that is what a newly qualified band 5 needs to do. It is a different level, yes; it absolutely is a different level of clinical responsibility, social care, health and promotion, or wherever you are. It is different levels, but that is what we need to be doing with learning disabilities nurses. In the area I work in, that is what we are doing to map their ability and efficacy over the course of the year. It is about asking, “Are you doing these five things?” If not, why not? What can we do to help you do them? If you are, brilliant. What are you doing, and how can we replicate that elsewhere?
Q73 Mark Jenkinson: I am afraid that Jim is going to feel a little left out on these couple of questions, which are directed at George. George, your members have identified problems around the overuse of psychotropic medications for people with learning disabilities. Can you describe those problems and how they might be addressed?
George Appleton: This really comes back to a failure of Government to reduce the number of people in in-patient, inappropriate, long-stay hospital facilities and to create the amount of community provision that is needed out there. The link that you have drawn there, Mark, is in relation to national Government papers that are now being published. For example, the Care Quality Commission published the report “Out of sight—who cares?”, which draws an inextricable link between those hospital settings and the use of restraint, segregation and over-medicalisation.
What we are looking at now is what the blockers and barriers are to being able to increase the amount of community provision. Individuals in these settings require high-quality care, built in capable environments that allow for access to the community, close to their families. They should allow for integration into that community and for people to live, ultimately, a meaningful and purposeful life.
Q74 Mark Jenkinson: So the problems stem from being in-patients directly?
George Appleton: Yes. It is not necessarily the direct result, but that is one of the key facilitators of the use of over-medicalisation in that respect. As I alluded to earlier, in July last year the Government published the “Building the Right Support Action Plan”, which looked at how we can reduce reliance on these in-patient settings and increase the provision of community-based support. From Care England’s perspective, we are concerned that it simply represents the latest in a long line of Government publications aimed at achieving that very message. As I alluded to earlier as well, the issue with that particular paper is that the voice of the independent adult social care sector is not heard loudly enough. We need an equal seat around the table because we have something to offer.
I was speaking to one of my members recently, and they were describing a particular individual whom they had taken out of one of those hospital settings. At the time, that individual was being supported 3:1, 4:1, which means four carers looking after one person at any one time. Over the course of several years, that staffing ratio had come down to 1:1, and the ambition is hopefully to enable that individual to live independently in some capacity going forwards. That is obviously a very isolated but good-news story. We need more of those good-news stories; in other words, we need to look at what the independent sector providers can do that perhaps a hospital setting can’t do.
Q75 Mark Jenkinson: You used the term “facilitation” in relation to over-medicalisation. Is the suggestion that, for an in-patient, it is an easy solution, or that the environment creates the need?
George Appleton: I think it is the fact that, in a hospital setting, many of the areas are not purpose-built for the needs of an individual. Across the two panels today, we have heard about the need for person-centred, individualised care, built around the specific needs of that individual. Within the community—within an independent care sector facility—you are far more easily able to provide a capable environment, correct staffing levels and access to the community and one’s family. That may be more of a challenge to offer in a hospital setting. That is not to say, of course, that all these in-patient settings are negative. However, we have seen, for example, with the likes of Whorlton Hall and Cawston Park Hospital, that there are cases where they ultimately have negative implications for individuals with learning disabilities and autism.
Q76 Dame Caroline Dinenage: Can I come in on that question? I raised this in Health questions yesterday. The “Transforming Care” piece of work was published a few years ago, with a strong aspiration of halving the number of people with learning disabilities and autism in in-patient settings in mental health units by next year. We are nowhere near achieving that target. When it comes to children, the number has virtually doubled; it has gone from 110 to 200. The average stay of someone in these hospitals is over five years, which is way too long. After the terrible experiences of Winterbourne View over a decade ago, we continue to hear dreadful stories of appalling care. What do you see as the barriers to realising the aspirations of the “Transforming Care” work?
George Appleton: Perhaps the first step is ensuring that care providers are seen as equal partners. We potentially have a new vehicle for success through integrated care systems. However, we have already seen that, within the governance structure of integrated care systems, care providers aren’t able to sit on the ICB level—they are not able to sit at the very top echelons of decision makers or to help influence those decisions.
It is about taking a step back and looking at where the voice is heard, or where the voice of social care is within the discussion. Often, it is not heard enough. There needs to be far greater joined-up working going forwards. That may well start from a perspective of the integrated care systems evaluating their local areas. How can we involve the voice of adult social care providers?
There also needs to be significantly more investment from central Government in social care providers, as I mentioned. There is a huge funding gap that currently exists within the sector. Many care providers want to be able to develop and invest in their services, and to develop the likes of the services that I have just discussed in terms of capable environments with correct staffing levels, despite the workforce crisis. There are lots of issues that all affect this very issue. Ultimately, it comes back to what the Government can do to better enable the voice of social care, invest in social care settings and trust that we can deliver positive outcomes for these individuals.
Q77 Dame Caroline Dinenage: But, George, in so many cases, local authorities are paying a fortune to keep people in in-patient settings, which are highly inappropriate. That money would be so much better spent on building the right provision within their own communities. Often these places are hundreds of miles away from where people live, which just exacerbates the situation. So saying they need more money is a little bit simplistic, if you don’t mind me saying so. Actually, there is a lot of money being spent on this already, but in completely the wrong way. Your point on the ICBs is really important, and there should be more representation for social care, but how do you incentivise local authorities to stop spending the money in the wrong way?
George Appleton: It is really interesting, because some of the local authorities I have spoken to are actively calling for this support. They are actively calling for more community services to be developed, so that they can ultimately look at discharging these individuals from long-stay hospitals. As I said, it is potentially about re-evaluating where the voice of social care is heard within these discussions, looking at what potential barriers the regulator is putting in place, because obviously they have their own protocol around what was “Registering the right support” and is now “Right support, right care, right culture”. It is about looking at what models the regulator is allowing to be built. Obviously, there need to be safeguards in place for these individuals, but it is about looking at creative models within the community that may not necessarily fit “best practice” guidance. But if you are able to demonstrate that positive outcomes can be delivered for these individuals, it certainly should not be shirked or looked at as being something not worth commissioning. It should be about how we can upscale this and look at commissioning it on a wider scale.
Q78 Dame Caroline Dinenage: Do you think that, in the case of some local authorities, it is a situation of out of sight and out of mind?
George Appleton: Unfortunately, yes. It very much comes back to the name of the CQC publication, “Out of sight—who cares?”. If people are behind closed doors, they are potentially not as visible and not necessarily as prominent within society as they should be. These are real individuals with real needs, and often their needs are overlooked in the context of the current system, which you have alluded to.
Dame Caroline Dinenage: Thank you.
Q79 Mark Jenkinson: We have just touched on some of this, George, but in your written evidence you identified difficulties around joint work between hospitals and social care support teams. What are your main concerns?
George Appleton: Really, it is about the joining up of initiatives within a hospital and a social care setting. Despite one sitting within the “health sector” and one sitting within the “social care sector”, the needs of individuals—as I am sure Jim will advocate for—are often very similar in that respect, so these individuals have commonalities across both systems. But there is often a gap between how an individual transitions between the health sector and the social care sector. As I have alluded to, we have a new opportunity, with integrated care systems, to look at trying to fill that gap—trying to join the workforces, for example. Creating portability of skills between individuals who work in the NHS and those who work in social care is an example. There needs to be a greater level lent towards the current barriers to integration at present, which include workforce-related issues, funding-related issues and regulatory issues. But, going forward, we need to look from a perspective of needing to improve outcomes for individuals, rather than focusing on the level of bureaucracy that integration often comes into contact with.
Chair: Thank you both very much for your evidence this afternoon. It is hugely appreciated. If there is anything you would like to add in writing, please do. Jim, I think you already referred to some case studies that we can expect to come our way.
Jim Blair: Yes.
Chair: It just falls on me to close the meeting. Thank you very much.