|Angela Burns AM|
|Dai Lloyd AM||Cadeirydd y Pwyllgor|
|Julie Morgan AM|
|Lynne Neagle AM|
|Neil Hamilton AM|
|Rhianon Passmore AM|
|Rhun ap Iorwerth AM|
|Andrea Higgins||Prifysgol Caerdydd|
|Claire Lister||Cyngor Bwrdeistref Sirol Conwy|
|Conwy County Borough Council|
|Dr Amani Hassan||Coleg Brenhinol y Seiciatryddion|
|Royal College of Psychiatrists|
|Dr Catherine Norton||Coleg Brenhinol Pediatreg ac Iechyd Plant|
|Royal College of Paediatrics and Child Health|
|Dr Jane Fenton-May||Coleg Brenhinol yr Ymarferwyr Cyffredinol|
|Royal College of General Practitioners|
|Dr Kate Swindon||Cyngor Bwrdeistref Sirol Conwy|
|Conwy County Borough Council|
|Dr Mair Hopkin||Coleg Brenhinol yr Ymarferwyr Cyffredinol Cymru|
|Royal College of General Practitioners Wales|
|Dr Martin Simmonds||Coleg Brenhinol Pediatreg ac Iechyd Plant|
|Royal College of Paediatrics and Child Health|
|Dr Nicola Griffiths||Gwent Integrated Autism Service|
|Gwent Integrated Autism Service|
|Dr Rona Aldridge||Integrated Autism Service Cardiff and the Vale|
|Integrated Autism Service Cardiff and the Vale|
|Jo Taylor||Flintshire County Council|
|Flintshire County Council|
|Keith Ingram||Cyngor Bro Morgannwg|
|Vale of Glamorgan Council|
|Naomi Alleyne||Cymdeithas Llywodraeth Leol Cymru|
|Welsh Local Government Association|
|Nigel Atter||Cymdeithas Seicolegol Prydain|
|British Psychological Society|
|Professor Alka Ahuja||Bwrdd Iechyd Lleol Aneurin Bevan|
|Aneurin Bevan Local Health Board|
|Sian Lewis||Gwent Integrated Autism Service|
|Gwent Integrated Autism Service|
|Wendy Thomas||National Professional Lead for Autism|
|National Professional Lead for Autism|
|Katie Wyatt||Cynghorydd Cyfreithiol|
|Lowri Jones||Dirprwy Glerc|
|1. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau||1. Introductions, apologies, substitutions and declarations of interest|
|2. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth â chynrychiolwyr Byrddau Iechyd Lleol a Choleg Brenhinol yr Ymarferwyr Cyffredinol||2. Autism (Wales) Bill: Evidence session with representatives of Local Health Boards and the Royal College of General Practitioners|
|3. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda Chymdeithas Llywodraeth Leol Cymru a'r Gymdeithas Cyfarwyddwyr Gwasanaethau Cymdeithasol||3. Autism (Wales) Bill: Evidence session with Welsh Local Government Association and the Association of Directors of Social Services|
|4. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda'r Gymuned Ymarfer diagnosis oedolion ac ymarferwyr Gwasanaeth Awtistiaeth Integredig||4. Autism (Wales) Bill: Evidence session with the Community of Practice for adult diagnosis and Integrated Autism Service practitioners|
|5. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda Choleg Brenhinol y Seiciatryddion a Choleg Brenhinol Pediatreg ac Iechyd Plant||5. Autism (Wales) Bill: Evidence session with the Royal College of Psychiatrists and the Royal College of Paediatrics and Child Health|
|6. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda Chymdeithas Seicolegol Prydain a'r Gymdeithas Seicolegwyr Addysgol||6. Autism (Wales) Bill: Evidence session with the British Psychological Society and the Association of Educational Psychologists|
|8. Cynnig o dan Reol Sefydlog 17.42 i benderfynu gwahardd y cyhoedd o weddill cyfarfod heddiw ac ar gyfer y cyfarfod ar 17 Hydref||8. Motion under Standing Order 17.42 to resolve to exclude the public from the remainder of today's meeting and for the meeting on 17 October|
|7. Papurau i'w nodi||7. Papers to note|
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.
The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.
Dechreuodd y cyfarfod am 09:30.
The meeting began at 09:30.
Croeso i gyfarfod diweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. O dan eitem 1, rydw i'n estyn croeso i'm cyd-aelodau o'r pwyllgor yma. A allaf i bellach egluro bod y cyfarfod yma yn ddwyieithog? Gellir defnyddio clustffonau i glywed cyfieithu ar y pryd o'r Gymraeg i'r Saesneg ar sianel 1, neu i glywed cyfraniadau yn yr iaith wreiddiol yn well ar sianel 2.
Yn naturiol, os byddwn ni'n clywed larwm tân yn canu, nid ydym ni'n disgwyl ymarfer y bore yma, felly mae'n berig bod yna rywbeth mawr o le, felly dylid dilyn cyfarwyddiadau'r tywyswyr os byddwch chi'n clywed larwm tân.
Rydym ni wedi derbyn ymddiheuriadau oddi wrth Dawn Bowden. Rydw i'n credu y byddai'n syniad, gan fod Caroline Jones wedi ein gadael ni fel pwyllgor nawr, i ysgrifennu yn ffurfiol iddi i ddiolch am ei chyfraniad dros y ddwy flynedd diwethaf i waith y pwyllgor yma, a hefyd fe wnawn ni groesawu yn ffurfiol Neil Hamilton i'r pwyllgor am y tro cyntaf. Croeso, Neil.
Welcome to the latest meeting of the Health, Social Care and Sport Committee here at the National Assembly for Wales. Under item 1, I welcome my fellow members of this committee. May I explain that this meeting is bilingual? Headsets are available to hear interpretation from Welsh to English on channel 1, or to hear contributions in the original language amplified on channel 2.
Naturally, if we do hear a fire alarm, we're not expecting a fire drill this morning, so there's a danger that something's really wrong, so we should follow the instructions of the ushers should the alarm sound.
We've received apologies from Dawn Bowden. I think it would be an idea, since Caroline Jones has left us as a committee now, to write formally to thank her for her contribution over the last two years to the work of this committee, and also I'd like to formally welcome Neil Hamilton to this committee for the very first time. Welcome, Neil.
Reit. Mae hynny'n dod â ni, gyda chymaint â hynny o ragymadrodd, i eitem 2, ac rydym ni'n parhau i graffu ar Fil Awtistiaeth (Cymru). Rydym ni yn y cyfnod cyntaf. Diben yr holl graffu—roeddem ni wrthi'r wythnos diwethaf a'r wythnos cyn hynny; mi fyddwn ni wrthi eto—ydy penderfynu yn y cyfnod yma a oes angen y ddeddfwriaeth yma o gwbl ai peidio. Mae gennym ni res o dystion drwy heddiw, fel yr oedd yr wythnos diwethaf, a hefyd fe fyddwn ni'n cael rhagor o gyfarfodydd i fynd trwy'r un un fath o graffu.
Felly, y bore yma, o'n blaenau ni mae Dr Mair Hopkin, cyd-gadeirydd Coleg Brenhinol yr Ymarferwyr Cyffredinol Cymru, a hefyd Dr Jane Fenton-May, Coleg Brenhinol yr Ymarferwyr Cyffredinol Cymru hefyd. Croeso i chi'ch dwy. Rydym ni wedi derbyn eich tystiolaeth ysgrifenedig ymlaen llaw—diolch yn fawr iawn i chi—ac, yn ôl ein traddodiad yn y pwyllgor yma, rydym ni'n mynd yn syth i mewn i gwestiynau, rhai bach hawdd, ac mae Rhun yn mynd i ddechrau.
Right, then. That brings us, then, to the second item on the agenda, and we continue our evidence sessions on the Autism (Wales) Bill. We're at the first stage now. The purpose of the scrutiny—we undertook scrutiny last week and the week before; will be doing so again—was to just decide, in this stage, whether we need this legislation at all. We have a range of witnesses today, as was the case last week, and we'll have more meetings to scrutinise further.
So, this morning, in front of us, we're joined by Dr Mair Hopkin, who's the joint chair of the Royal College of General Practitioners in Wales, and also Dr Jane Fenton-May of the Royal College of General Practitioners in Wales. Welcome to you both. We've received your written evidence in advance, so thank you for that, and as is customary now, we'll go straight into questions—easy questions to begin with—and we begin with Rhun.
Bore da iawn i chi. Diolch gennyf innau am y papur ysgrifenedig rydym ni wedi'i dderbyn. Mae'r papur hwnnw yn rhestru sawl consýrn sydd gennych chi ynglŷn â'r Bil arfaethedig yma. Tybed a allwch chi roi rhyw drosolwg i ni o beth ydy'r pryderon yna sydd gennych chi.
Good morning. Thank you for the written paper that we've received. That paper lists several concerns that you have with regard to this proposed Bill. I wonder whether you could give us an overview of what those concerns are, please.
I think the main concern is that by labelling services specifically for one condition there will be a number of people who require services who don't fulfil the diagnostic category for autism who will then not get sufficient services, and we are looking at the fact that, under the Social Services and Well-being (Wales) Act 2014, patients should be assessed for their needs, and we want to ensure that these patients are assessed for their needs, rather than based on a diagnosis.
Okay. Is there a means, as we go through the processes that we follow here in the Assembly, to look at how to introduce that needs assessment into the Bill, alongside the work, it appears from the evidence that we've received, to strengthen the diagnostic side of things?
I think the diagnosis of autism is quite a difficult diagnosis. It's a spectrum disorder, and so people will have varying demonstrations of the symptoms and signs of autism, and I think there's a danger that you might be pushing people into being given a diagnosis either too early, when it's not quite clear what the diagnosis is, and that services will be put in place based on the diagnosis, not based on individual need. People with autism will have very differing needs at different times of their lives.
We'll be going into that in more detail this morning, so we'll stick to higher level stuff. Given that there is widespread agreement amongst the groups of people affected—those with autistic spectrum disorder and their families—that something needs to happen to improve outcomes, are you proposing ways of doing that? Because we've had a strategy in place for a couple of years, and we're told that it hasn't made a difference.
I think it's very important that we have sufficient resources for all people who have neurodevelopmental disorders. One of the difficulties is that there's patchy resource and difficulty in accessing services, and I don't think having a Bill without having the resources to provide those services is going to make very much difference to individual patients or their families.
One of the problems about prioritising a diagnostic category for services—. For example, if you compare—. Some people who have lots of physical disabilities wait a long time to get services; you get a patient who's diagnosed with cancer, historically, they got services really quickly because they have this cancer diagnosis and their needs may have been—. Okay, so they may have had an advancing malignant cancer and their life expectancy was short, but somebody else might have had huge needs that were greater than the cancer patient that were going on for a long time and they weren't getting the support from social services, for example, home adaptations, that the cancer patient was. So, that's where I'm coming from: the label sometimes prioritises the services at the risk of reducing services for other people who have equivalent needs, which, sometimes, are actually greater needs but they get deprioritised because they haven't got this label. So, that is my real concern about having services that are just linked to one diagnosis, and I know you've broadened it to talk about neurodisability, but we need to ensure that we have sufficient services to support all of those people who have got the needs rather than just the ones that have got—. And finance is a problem to do that, and we want to not silo everything into an autistic service to the disadvantage of everybody else who has similar needs.
Okay. That's going to be uncomfortable listening for people with ASD.
No, because we're hoping that everybody who's got needs will have those needs met, irrespective of having a diagnosis. So, if we can improve services and put funding into providing services, then that would benefit all our patients.
Thank you. The royal college has said that the Bill is unlikely to offer any benefits beyond the existing strategy, but we've had that strategy for 10 years, and families affected by autism tell us that it's not making a difference for them. What's your response to that view?
Well, I think we need to look at how we support patients' needs rather than just looking at the strategy and looking at autism across the board for young people and children—well, older people, as well; for people who have got disabilities.
I think you would find that there are many children and adults with diagnoses who find that they don't get access to the services they need.
Okay. So, Welsh Government is planning to introduce a statutory code. Have you got any thoughts on what should be in that, then, so that we can make a difference to families with autism on the basis of need?
I think it would be provision of services to help diagnosing at the risk of siloing services for children who have a diagnosis. There are often children who have equal needs who don't have a diagnosis and will never have a diagnosis but will have great needs. So, we need to improve services that GPs can make referrals to. There need to be clear pathways that GPs can make referrals to so that we don't get referrals bounced back from different services, and there needs to be provision in health, social care and education for all our patients who have additional needs.
But do you recognise that there is a problem with the NHS generally in that diagnosis is often sought because that is seen as the pathway to getting the services?
I think that is quite difficult, because we would prefer to see something that was needs-driven and met individual needs and provided more holistic care for our individual patients than something that relies on having a diagnostic label. I think that's our concern. And autism is a very difficult diagnosis.
Yes. Inevitably, if there's not enough money in the system to provide for all current needs, the way in which you get your priority raised in the system is by shouting louder than anybody else. So, isn't it a bit of a fantasy to think that we could have this entirely needs-based approach that you've been describing, however desirable that might be? So, that doesn't seem to me to be a fundamental objection to this Bill in itself.
But you can say a person who has this particular level of need needs the support; they don't have to have the whole spectrum to have a diagnosis, necessarily, of autism. They still need the support for that particular part of their needs. So, if you can assess that they hit that barrier, do they need the full gambit of the diagnosis? And, what we're saying is, 'No, they don't need the full gambit of the diagnosis, they need to have that support sorted out, whatever it is.'
I understand that and we're dealing here with, as you rightly say, a spectrum condition, which can manifest itself in various degrees of severity and in many different superficial ways. That's always going to be a more difficult thing to deal with than something that is discrete and obvious and limited in its symptoms. But thank you very much for that.
I'd just like to ask one specific question, because the Welsh Government has now said that it's going to develop autism registers to improve data collection. Will this help, do you think, to perhaps reduce these diagnostic issues that you've just been talking about? Because we'll know more about individual conditions, how many people suffer from them—perhaps at different points on the spectrum, if it can be refined in that way—and therefore prioritisation can be more informed.
I think we'd want to see what the benefits of a register would be. We can already identify our patients who have a diagnosis of autism within the practice. The list of the items that were put in this proposed Bill—it's difficult to know how that particular information is going to improve services. We already know that we don't have enough services to help with the diagnosis. We already know that there's often a delay. We already know that there's no linked up care between health, social services and education, which is what these patients need. And we'd like to know how a register would improve that and what the benefits of a register would be, because I don't think there's any evidence that having a register, particularly, for any disorder, improves care.
I'm not sure—if I can come in there—that the GP is the person who should be running this register, because they don't have all the bits of the equation and there needs to be input from schools. So, if you're looking at the needs assessment, quite often, that needs to be something that is done within a school. We have not enough educational psychologists supporting the schools; we don't have the mechanisms for the school, sometimes, to refer to specialist child and adolescent mental health services to get the support they need already for the children that they have. And we have a huge problem for adults who have autism and for support within employment and training. I don't think that we would be able to capture a lot of that information in general practice, because we wouldn't have it. So, all we can do is capture that this person has been to a formal service and had a diagnosis and this is the code for autism. And you might be able to pull out, but we wouldn't be able to pull out the people who have additional needs for education and training within our system who haven't got a diagnosis. That needs somebody else to be doing that. I don't know whether the regional boards could pull that together through the work that they do with health and local authorities—I don't know, but I really don't think a GP would be in a position to do that.
So, your view is, just to try and summarise that, that the data that is collected might be compromised by incompleteness and therefore be misleading.
It could be. Unless somebody pulls it all together, as I say, from health and social services and education. That would need to be done, and that is not the job of a GP. And do I dare mention we've already got workload pressures in general practice, as other services have, and so it would need to be a specific kind of funded post, if there was money for it, to actually pull all that together.
Yes, I just wanted to quickly pick up on something you said, Mair, which, Jane, you've sort of answered, which was: you said, as GPs, we know who's got an autism diagnosis already. Really? Because, again, you've just said you might not, and also, because what we hear from parents is that—. Let me rephrase it. How many GPs in Wales actually make that diagnosis of autism? Because in my patch, nobody does. They all have to go off to a paediatrician to make it.
I would hope no GP would make a diagnosis of autism.
So how can you say, then, that you know? Because there are so many who haven't been diagnosed, so there must be an awful lot—
It is not a diagnosis a GP should be making. It's a diagnosis that should be made by specially trained health professionals, and several health professionals, over a period of time. That's where one of the difficulties is. It's very difficult to make a diagnosis. You can suspect somebody has autism. If somebody has been given a diagnosis of autism, then that would be coded on their medical records and we could pull off our patients.
That's what I wanted the clarification on. I wanted to make sure that we really understood, on the record, that actually you will know only those who have been diagnosed, but there may be a huge number who are yet to receive a diagnosis and you would not be aware that they may be autistic.
Absolutely, and I think that there are probably other people who would be in a position to identify people who have problems, because we don't see all our children all of the time. The last developmental check we do for them is at about nine months. They then have contact with the health visitors and then they enter into the school system. So there need to be many pathways of access for parents to get a diagnosis, and for adults, as well. It's exceptionally difficult if you suspect that an adult has autism to access appropriate services for adults.
Yes, thank you very much. Excuse my voice—I'm losing it, or I've lost it.
National Autistic Society Cymru argued last week that diagnosis, while it was important, is only one element of the Bill, which is much broader, and looks at a whole range of areas—it takes a holistic approach. It believes that a statutory code would have a narrower focus than then Bill. What is your view on that?
Are you suggesting that—
You are suggesting that a statutory code would make it more restricted.
Okay. Well, I suppose it would depend on how the code was written. We would hope, if the Bill comes in and there is a statutory code, that we could ensure that it was made as broad as possible. But we have no control about what goes into it.
Thank you. From what you've said, do you believe, then, or do you feel, in terms of the layers of education, training and employment, wider care services, housing, the whole gamut of the holistic services that need to be wrapped around, potentially, those on the spectrum disorder, bearing in mind how wide that is, and the differences of the needs, that actually having a diagnostic label via this category, and a pathway through the Bill, would actually in a sense undermine the principles and ethos of needs-based healthcare? Is there any comment on that? Do you feel that it's something that policy makers should stay well away from?
I think that there is a push for parents and different authorities to push for a label before they provide services for whatever the condition is.
So, if we have a needs—. If we say, 'This child has a need for educational support', or whatever description that is, without having that label, if you can decide what sort of support they need, is that not better than having this 'autism' label? And that should be what we should be doing with these children, not just defining the label. Labels can be useful sometimes, and they can provide support for different services, but we should be counting how many need the extra support in the schools.
So, in that regard, you said it actually undermines the principle.
And I think it's such a shame that people have to wait until they have a label before they can access any of the services that they need.
So, from that, in terms of the wider wraparound services that need to be there, from your clinical backgrounds and experiences, how then would you say to policy makers in this regard, 'We need to be able to deliver what's needed for those on the spectrum'? How would you approach this, bearing in mind that there's a vast gamut of people that are not accessing due to a lack of educational psychologists, and everything that's been discussed? How would you advise policy makers in that regard, because, basically, there is a big cohort of people on this spectrum, we believe, who are not accessing what they need? And there is that clamour, rightly, for things to improve. So, how would you approach this?
I think the point that you made about some people not having a diagnosis, but still having needs, the support services should be there while you're waiting for a diagnosis, because sometimes it can take a long time. It would be very good if we could have policy that linked up social services, health and education, and I think that doing that would go a long way towards meeting a lot of unmet needs.
It's just I'm quite taken aback. Time and time again, parents and those with ASD tell us that delays in diagnosis is one of the biggest hurdles that they face, and surely isn't being given a diagnosis one of the fundamental parts of getting to a place where you will be assessed in order to decide what your needs are, and whether resources can be made available to fulfil them?
But you haven't got a diagnosis until you've been diagnosed, and you've got needs, and there are lots of people who will have needs. And I think one of the difficulties of needing a diagnosis is that you cannot access the support that you need until you've had that diagnosis made. And wouldn't it be better if services were put in at a time when need was identified, rather than at the time of a diagnosis?
I'm sorry to interrupt, but isn't that an argument for just saying, 'Public services should be better; we should be looking after people better'? Well, yes, we all agree with that, surely. You know, you should get a diagnosis for any illness tomorrow and be treated tomorrow, or today, even—why wait till tomorrow? And education systems should make sure that they're tailoring education for the needs of every child. We're talking about autism here, and the fact, it seems to us, that people who are affected by ASD feel that delays in diagnosis, recognition of the condition that they have, is holding them back from getting the help that they need?
But you're saying these people have got a problem. They're not people that haven't got a problem, and they're waiting in the queue, so isn't it better that they have somebody who assesses that little bit of them, and says they need educational support, or whatever it is, or social support, and have that support for that need while they're waiting? Now, I'm not saying they can't go on and have a diagnosis of autism, but if they get to the autism specialist and then they get told, 'You haven't got ASD, so we can't give you any services', surely, that is worse. Surely, it's better to say, 'You have this part of the spectrum, and you need support for that bit of it and for that to carry on before and after you've had a diagnosis.'
If you haven't had a diagnosis, how do you know what bit you need support on, and other people won't recognise it?
Because somebody's made some decision that you have a problem, whatever it is—you need support in coping in school, or something. So, you need an educational psychologist to be part of that assessment that has been identified by the school. So, there should then be support going into the school to help support that need while you're waiting to go and see the wider team to get a diagnosis or not a diagnosis. And if you don't get a diagnosis, you should still be getting the support, but sometimes you don't actually get any support, as you've said, until you get to the broader team, and they spend a long time assessing you and deciding whether or not you have autism, and if you only then get support because you've got autism, then you've still got the problem, haven't you? I'm not saying that we should have a social worker for every single person out there or whatever it is, but the ones that have been identified through the system as having a need.
And just having a diagnosis of autism is a very broad spectrum of needs, and your needs may be very much the same as somebody who doesn't have that diagnosis. As Jane said, that might then divert services away from other people who have equal or more needs.
Okay, back to Rhianon. It's probably been covered, actually, but carry on.
You do state that you feel that this will artificially spike diagnoses of autism. You've already covered the fact that you feel that those who may not be diagnosed will have services diverted away from them, and I believe you think that that could be somebody with equally as strong needs within the spectrum or around it. How difficult do you think that would be in terms of being able to meet the needs of those who haven't been diagnosed?
I think if the diagnosis of autism is increased and the expectations are that if you have that diagnosis you will have access to specific services, then because we've got a finite number of services it is bound to leave other people without services.
Is that not at the root of this, the fact that systemically we just need to have more services? We need to have more trained clinical educational psychologists. Have you got any comment on that?
Yes, we need more services. We need to perhaps look at how we move services from different places—and that is a political decision, I know, but we need to have a look at—
—how they're organised.
Thank you, Chair. The Welsh NHS Confederation has expressed worries that having autism-specific legislation might lead to a call for other condition-specific legislation. Do you think there's any evidence base to support that claim?
I believe there's already been some work about getting a diagnosis of ADHD specific and having specific legislation around that. I think if you are a family and you see that services are available for one diagnosis and you've got a different diagnosis, then you're going to want to push for the same, and I think we could then end up drowned in legislation with no increase of provision of services, and the most important thing is that we're meeting patients' needs.
Okay. The committee's had evidence that the Bill may benefit other conditions as everybody will get their initial assessment earlier, and if they haven't got an autistic spectrum disorder they can be referred on more quickly. Is that a view that you would subscribe to?
It would be very good if we could have access to diagnostic services earlier. It's a difficult diagnosis. It's a diagnosis that needs to be made over time. I think we do have concerns that people will be labelled as being autistic in order to access services, and unless you've got more services it's going to be very difficult if you have a child and you're told that they don't have autism and then you're told that there is no provision for services—I think education in particular for children with these problems.
There's a whole issue about co-ordination of services and the fact that health cannot refer to education. Angela's going to wrap up this session.
Yes, and we've covered a lot of it. It's about waiting times. Can you just give us your view on the 26-week waiting time that is currently allegedly in place? And of course, in the autism Bill, the view that they're trying to bring the waiting time—from perhaps a GP saying, 'Hmm, I think this child needs to be looked at by somebody else', to that very first meeting. I just want to make clear that it's not to diagnosis, it's to being part of the process. Just a view.
Waiting times are a nightmare for families, patients, the GPs, because they have to, kind of, buffer the services for the patients and support them while they're waiting for these long times, and we need to try and bring them down for people. But if we can get some sort of assessments going on, because, ultimately, the psychiatrists—usually, it's the child psychiatrists, and we know that there is a shortage of child psychiatrists in Wales, as in the rest of the UK—are in short supply. So, if we can try and improve other services and get assessments being done so the families feel that there is something happening before they get this final diagnosis—or no diagnosis, depending on what happens—then surely that is better. So, it needs to be a process, and, as we said, you sometimes need to see the patient or have the patient assessed by a number of different people over a length of time. So, it's not an all or nothing thing. And the worst thing is you bring down the waiting time for that first appointment and then they say, 'Well, you've got to wait another four months, six months, for the assessment.' Well, that's no help to anybody. The whole process needs to be shortened and be more supportive for the families.
I agree—everything you've said, I agree with in principle. As Rhun said, it's this whole bit about, 'We want everything to be better.' But when I talk to parents in my constituency who've come to me with concerns about their children, one of the impressions that I walk away with is that by having just that first referral, they feel they're in a system, they feel they've finally been recognised. It's the bit before where they're shouting in the wind and no-one's listening to them and they're not even on a treadmill. If you're on a treadmill, and you know you're waiting and you've got to wait and wait and wait—. They've sort of said to me that they're being heard, that they're on somebody's radar, somewhere, even if they're in the far, far distance. So, I just wonder about your views on the impact of things like waiting times and targets et cetera. We've been talking about the children or the adults who've got autism, but do you think there's any benefit to the effect that it might have on the wider family? Because one of the things, I think, we've heard as a committee is that it's the wider family that suffer as well, horrendously, and go through very difficult times, especially if they have a person in their lives who's got a very violent element of it and so on, and that, actually, there's just that notion of rescue, if you like.
I think, anything that provides services earlier would be an advantage. I've had situations where parents have come to see me because the school has had their allocation of referrals to the clinical psychologist and therefore they are not able to access the education psychologist via the school and please could I do something about it', and, really, that shouldn't be—we should all be able to have access. I think one of the places that we're coming from is that it would be very good if we could put in support when the need is identified and before people become labelled. I think one of the dangers of having lists and targets is that you get these perverse incentives, and people will work to meet the target and lose sight of the individual. And I think we would like to look after our individuals and our families within the context of their communities.
But where I slightly struggle is the fact that in so many other conditions—and I'm going to use cancer because you raised it earlier—we have a set of targets, those are very, very clear, and I think there's a really strong argument that having that in place has improved, has made people be able to access help quicker. Now, I know that a counterargument might be, 'Well, yes, but if we don't diagnose something like cancer, that person could die, and therefore it is an imperative', but, actually, a young life that could be dramatically improved with the right support is also an imperative. And not just cancer—there are a number of other areas where there are waiting time targets in place and people argue that that has helped to improve that service. You don't think—.
It improves the service for that patient, but often to the detriment of other patients, whose needs may be even greater, although they haven't got that specific diagnosis, and I think that's one of our concerns—that it will divert access away. I think all families who are struggling with difficult behaviour, and all children who are exhibiting problems with education, need early input, whatever the diagnosis. The earlier you can input it, the better the outcome for that family and that individual, and I don't think you need a diagnosis for that.
You see, what I worry about is that in physical health, we're very, very keen to shove in all these waiting times and everything, and, again, an argument is that because you have it on, say, 10 key areas, it actually drags up the whole thing overall, eventually, because you've put a benchmark out there, 'This is what a service should look like', and all the peripheries and the smaller services, the cinderella conditions—they all start going forward because they're trying to get to that benchmark there, and you don't think that in mental health, which is what we're talking about, in neurological conditions, that we can apply the same. Because it does just seem to me it's such a cinderella, and it seems to me that, well, because we can't help everybody, we're not going to help anybody. We're not going to put some clear criteria down that says, 'This is where we should be, this is our gold standard, and we'll get there with this and then we'll slowly get there with that, and drag everybody up to that', because it's just not happening. The utopian view just isn't happening.
I'm happy to have a target for when patients must be seen by, but sometimes the targets currently seem to be really far away, and so what I'm saying is you might not have the final referral there—why can't you have some input from services before that? So, your target is whatever it is for your clinic, but you need a shorter target for getting the support service.
No, and I absolutely agree with that, but I did an freedom of information request about a year and a half ago, just as a matter of interest: education psychologists in Wales—257. And they didn't all work for county councils. So, actually, getting an educational psychologist is a bit like finding a bar of gold at the end of your bed in the morning.
We need to look at how we can support the input for those and for the schools to be able to get them to come and see the children, because I understand there is a limit on the number that the schools can refer to the educational psychologists, and they have huge waiting lists, so maybe your targets should be: how quickly can you see the educational psychologist? And it should be less than six months, because a lot can happen to that child, and it can be excluded from school in that six months, and things go even more pear-shaped as a result.
I think you've answered the questions on workforce planning, because it is, even if we get that—. Again, I've had casework where children are seeing education psychologists, but actually the ed psych turned around and said, 'But I haven't got any money in my budget to put in this particular programme.' Dyslexia is one that's always pushed to the side and so on, so it is in the round and I totally accept that. I don't think there's any point in asking about workforce or, indeed, how you think we could improve the Bill. I think your position's pretty clear.
Great. That's fine. Any other questions? No. End of the session. Excellent. Thank you very much indeed. Excellent answers, excellent paper—thank you very much. You'll receive a transcription of these deliberations, to check that they're factually correct, anyway. Great, thanks very much.
We'll break for 10 minutes now, until the next witnesses come. Thank you.
Gohiriwyd y cyfarfod rhwng 10:08 a 10:17.
The meeting adjourned between 10:08 and 10:17.
Os gallaf i alw'r cyfarfod i drefn. Croeso nôl i chi i gyd. Rydym ni wedi cyrraedd, felly, eitem 3 yn ein craffu ar Fil Awtistiaeth (Cymru). Mae'r sesiwn nesaf yn sesiwn dystiolaeth gyda Chymdeithas Llywodraeth Leol Cymru a Chymdeithas Cyfarwyddwyr Gwasanaethau Cymdeithasol. Yn benodol, felly, rydw i’n falch iawn i groesawu i'r bwrdd: Noami Alleyne, cyfarwyddwr gwasanaethau cymdeithasol a thai, Cymdeithas Llywodraeth Leol Cymru; Keith Ingram, swyddog arweiniol prosiectau anhwylderau sbectrwm awtistiaeth, Cyngor Bro Morgannwg; Claire Lister, pennaeth gwasanaethau oedolion, Cyngor Bwrdeistref Sirol Conwy; a Jo Taylor, rheolwr gwasanaeth ar gyfer anableddau dysgu, anawsterau corfforol a nam ar y synhwyrau, Cyngor Sir y Fflint. Croeso i'r pedwar ohonoch chi.
Rydym ni wedi derbyn eich tystiolaeth ysgrifenedig ymlaen llaw, a diolch yn fawr iawn i chi am hynny. Mae amser ychydig bach yn gyfyngedig, achos mae yna nifer fawr o dystion gyda ni heddiw i fynd drwy'r craffu yma ar y cyfnod cyntaf o Fil Awtistiaeth (Cymru)—yn benodol, a oes angen Bil ai peidio? Dyna lle rydym ni arno fo ar hyn o bryd. Mae Lynne Neagle yn mynd i ofyn y cwestiynau cyntaf. Lynne.
If we can reconvene, and I call this meeting to order. Welcome back to all of you. We have, therefore, reached item 3 on our scrutiny of the Autism (Wales) Bill. This next session is an evidence session with the Welsh Local Government Association and the Association of Directors of Social Services. Specifically, therefore, I'm very pleased to welcome to the table: Noami Alleyne, director of social services and housing, Welsh Local Government Association; Keith Ingram, autism spectrum disorder project lead officer, Vale of Glamorgan Council; Claire Lister, head of adult services, Conwy County Borough Council; and Jo Taylor, service manager for learning disabilities, physical difficulties and sensory impaired at Flintshire County Council. Welcome to the four of you.
We have received your written evidence ahead of time, so thank you very much for that. Time is against us, because we do have very many witnesses to speak to us as we scrutinise on the first stage of this Autism (Wales) Bill, specifically whether a Bill is needed or not? That's the question we're asking at the moment. Lynne is going to ask the first questions. Lynne.
Thank you. Good morning. Could you both outline your objections to the Bill—your main objections?
Okay. Thank you. I think the first thing to say is that, obviously, we do support the intent and the principles behind the Bill, and I think that we do all have the same ambition to see significant improvements made to services for people with autism. However, we do have some concerns around the Bill. We don't think it will achieve some of the significant improvements that are required in the whole system—that are required on that basis.
There's a lot of work that is ongoing at the moment to improve services, and I think our view is that that work should be given time to bed in, particularly around the integrated autism services. Plus, there's been a lot of work around raising awareness of autism and training of staff. So, there's a lot of work ongoing and, as the Cabinet Secretary set out in his recent statement, a lot of work further planned to build upon the work that's already ongoing.
I think our concern around the legislation is, in certain ways, the focus of some elements of the Bill, particularly in terms of diagnosis, because of the importance of the continued support. Some of the other issues that need to be addressed—. I think we think that there is a high risk that it could actually direct resources into the—not into the wrong arena, but direct resources into certain arenas that will have impacts in other areas. So, there is a potential for unintended consequences as the Bill is set out.
I think our other view is that with the existing legislation that we do have—so the Social Services and Well-being (Wales) Act 2014, the additional learning needs legislation, the Equality Act 2010, the Well-being of Future Generations (Wales) Act 2015. Again, some of those are relatively new, but those Acts also enable similar issues to be addressed, and there is a risk that, actually, the autism Bill will confuse or undermine some of the existing legislation in that way.
I think, obviously, we're aware that the committee has heard about the impact of the Bill within England. I think that in some of the progress that was set out—that's taken around 10 years in England—we've already got those arrangements in place in Wales, and that's been achieved without the requirements of legislation. So, I think that summarises some of the main concerns that we have. So, it's not around the principle or what the Bill would try to achieve, but whether now is the appropriate time for such a Bill to be taken forward, given all of the ongoing work that may actually be disrupted by the introduction of a Bill as well.
Okay. So, you referred to the social services and well-being Act, but the committee has heard that many people with autism are actually struggling to access assessments and support via the Act, and that there may be issues with some of the assessment tools that are not responsive to people on the ASD spectrum. What's your response to that?
Do you want me—? I'll take that. I think, obviously, people make those comments and, genuinely, there have been some problems historically, and I think that's what very much lead to the creation of the integrated autism services, which—I don't know if members of the committee are aware—we have them, one in each area within Wales. That was in recognition of that need for specialism. Those services are very young. In north Wales, ours is only three months old. So, I think there is still one area that is yet to launch, and most of them are only—. The oldest are only a year old. So, within that, I think that we are yet to see the evidence on a large scale, but we do have anecdotal evidence of that specialism now being able to be provided. Those assessments are highly relevant to people with autism, and staff within those teams can actually offer the support after the diagnosis.
Yes. I just wanted to read Conwy social services' consultation response, which says,
'Currently on a local level, the criteria for acceptance for Disability Services'
—all of these assessments you're talking about—
'particularly health services, is for individuals whose IQ falls below 70, but we know that some people can have Autism but still function at a much higher level.'
So, I know you said that these services are bedding in, but there already appears to be a barrier to people being able to access assessments and support under the current system, and I just wonder what your view is on that.
Okay. I'm the head of integrated adults for Conwy, so I can probably respond appropriately to that. In respect of the way that we have set up our services or restructured our services, we designed our services in response to the social services and well-being Act. One of the things that we've actually done is developed a vulnerable people service. So, we have very clear criteria for people who access disability services, for the older people service, and one of the things that we became acutely aware of through the development of the Act was the fact that we would need to be able to assess people's needs—not necessarily somebody with a diagnosis—and that's our ethos for having our vulnerable persons service. So, I think the issue that we have in Conwy has been that we haven't necessarily had the diagnosis support from the health board in relation to being able to undertake diagnosis because the integrated service only just came into fruition. So, now that we have that in north Wales, that addresses the assessment criteria of getting a diagnosis for somebody who may have ASD. But actually, in terms of the provision of access for services afterwards, we have a dedicated service now that can provide that ongoing support and work alongside the experts in the team.
Sorry, can I—? Okay, I got all that, but we're looking at over the last x years, and this is only just beginning to kick in now. Is it only kicking in because it was a direct result of a piece of legislation, i.e. the social services and well-being Act?
In terms of the vulnerable persons service, no. We've had our vulnerable persons service in development for the last four or five years—in fact, how long have I been head of service? Six years, actually. It was something that, when I came into this current post, I was acutely aware of from my management of disability services for the 15 years prior to that, that we potentially had a gap in supporting people who are vulnerable in the community, not necessarily people who have always got a diagnosis of autism, but people who are, perhaps, vulnerable for a whole range of other factors, including things like the adverse childhood experiences and all that sort of stuff. So, we were aware that we had that growing trend within our local authority. My point is that, actually, it was always difficult to get the assessment, necessarily, in relation to ASD, or the spectrum, so what we now have is a very dedicated service that we can get that through, but also in terms of being able to tap into some very specialist support, if need be, from the people within that team.
No, if you're high functioning, yes.
We'll come to those issues later on, I think. Julie's got a question now.
Right, thank you. WLGA, you state that you have 'fundamental concerns' about such a Bill, but you appear comfortable with the new, forthcoming statutory code of practice on ASD, which will place new duties on local authorities. So, how are you comfortable with that, and what do you see as the differences between the two? Excuse my voice. [Laughter.]
Sorry, Julie—the question was: why would we feel comfortable with the code of practice as opposed to legislation? I think one of the issues that we've considered is that some of the areas where you'll need to focus some of that investment and some of that attention will shift over time. So, with the code of practice, while there'll be a range of issues that are addressed, it still enables more flexibility to be able to respond to specific issues or priorities that emerge as time goes on. And that can be amended in a much easier way, through the code of practice, or the code of practice can be amended, as opposed to needing to follow through a legislative process in terms of a Bill, at different points. Previous evidence from previous Bills will be that some of that information is much better included in guidance, rather than on the face of the Bill, because to change that information when it's on the face of the Bill or in the detail of the Bill—it's obviously set in stone at that stage.
I think one of the issues around the code of practice is around the need for it to be co-produced in that way, so that there will be a lot of discussion and debate and conversations around how and what is in the code and around the delivery. So, generally, it's because it'll enable more flexibility to be able to address some of the issues. If you have the legislation that focuses on some elements—so, obviously, one of our concerns is not because of the focus on diagnosis, but what may be to the detriment of some other issues that will be picked up in the code and are picked up through the strategy, or what will be required in the strategy in the Bill, but there is a vast focus on diagnosis, which may be to the detriment of others. But with the code of practice, it feels like it's a more holistic approach in terms of taking that forward.
Thank you, Chair. There does seem to be, from some of the evidence that you've submitted, quite a positive picture, and in terms of the initiatives that have been commenced, I can accept that there may be, on the surface, a feeling that we are moving forward. But, in terms of the evidence that we've received on this committee, particularly from the National Autistic Society Cymru, and also in terms of an evidence paper that we've accessed earlier today, that doesn't seem to be the picture on the ground. So, in terms of that mismatch, how do you feel that your services impact on those who are, at this moment in time, stating strongly that they're still, for instance, just being signposted by the integrated autism service rather than actually being supported?
I work within—my role is the ASD leader for Cardiff and the Vale, but my office is based within the integrated autism service, so I can see how that's operating on a day-to-day basis. It is important that you bear in mind that the condition of autism covers a very wide range. It's from people with a learning disability—IQs under 70—up to and including people who are perhaps post-doctoral fellows at the University Hospital of Wales, and we have worked with all of those and everything in between. They are simply people who live in our world, who live in our society.
It is not good enough to simply say to somebody, 'And you need to ring this number.' That doesn't work. That form of signposting, that saying, 'We have a Dewis information system. Why don't you go and look on that?'—that won't work. You have to be very structured with individuals who have a diagnosis. You have to talk with them. That may be on the telephone, it may be face to face—whatever's needed in terms of that to come up with a plan of what you're going to do next, and then directing them on. Some can independently go to the volunteering programme that you've recommended. Some might need a little bit more of a helping hand to get them there for the first event, or whatever, but it's about allowing them to engage directly with that society. That might also involve medical interventions, because we can't take that first step until a psychologist or a speech and language therapist or whatever has done the piece of work that then allows that low-level support to kick in, and then, eventually, you should be able to let them get on with their lives, let them be who they are. That's—
So in regard to that mismatch of evidence and experience that we've heard from those, as you say, from a vast array of different presentations, there does seem to be a mismatch in terms of the evidence that we've heard—that everything's all rosy in the garden, but the reality is quite prickly. Very.
I wouldn't say it's rosy.
I don't think we're saying it's rosy. I think we're saying the social services and well-being Act and the future generations Act have yet to embed to embed fully in our communities. We need to give them a chance to take effect. In my service area, we've restructured, we've created a service that meets the needs of a whole range of people who may or may not have a diagnosis of ASD. But actually we recognised that that was a growing need in our community.
That's in Conwy.
So, in regard to the roll-out across the whole of the current 22 local authorities, is that modelled effectively, because it sounds as if you've got a very good service? But is that model then across Wales? You said that there's only one that's three months old. How is that being tied together so that we've got a national approach to this?
I think, firstly, what we would say is that those with lived experience, and the experiences that people have, particularly when they have been negative and they have not been able to access services, it's important that we hear those stories, because that's what has to inform our approach of improvement, moving forward. But, also, there are many examples of good practice and examples of successful outcomes through the process. If the committee haven't heard any of those good practice examples, even in terms of preparing for the evidence here, quite a few have come through from local authorities in terms of testimonials, which we'd be happy to share with the committee.
You and other opponents of the Bill have claimed this is likely to create a two-tier system, and that would disadvantage other sufferers with different conditions. Of course, the National Autistic Society looks down the other end of the telescope and says, 'Well, we're the ones who are currently disadvantaged. There is a two-tier system. All we're trying to do is to level the playing field.' They also say that there's no evidence from England and Northern Ireland that legislating for their needs has produced the outcome that you fear. So, what would you say in answer to those responses?
I think there is a concern around specific legislation for one condition on that basis. There may be other areas that we all have concern about in terms of the experiences. I think, obviously, the social services Act, is something that encompasses all ages, it encompasses all issues that affect people. So, we think that it is broad enough to be able to pick up and address those issues. Obviously, the legislation in England has only focused on adults and although there have been some—I'm not sure if you'd say there have been improvements around adult diagnosis, but whereas children's diagnosis was quicker, that's now slipped back, so that's worse. So, I think our concern would be that certainly you don't want something that's age specific in terms of being able to pit one group against another. I think our view is very much around being able to use some of the existing legislation, the existing structures that are in place, in terms of taking those issues forward, and addressing the improvements on a consistent basis across Wales, because picking up on quickly Rhianon's point from earlier, the regions will have their integrated autism services but there is guidance that they are all following, there are standards that they're all looking to meet, so, collectively, it comes together as a national service.
And just picking up on one of the other issues earlier, which was around differentials, there's a lot of discussion between the practitioners within those integrated autism services. So, they're very much learning from each other but also identifying some of the challenges that they're coming from, and then they'll bring them to a network that we facilitate and people will say, 'Well, we've had this issue, how has somebody else addressed that?' So, there are opportunities to learn from that.
We're not opponents of the Bill—I think I'd take issue with that—our concern would be that now may not be the best time to introduce it to enable time to bed in to deliver the improvements that we think are in train, and the trajectory—I can't say that word properly—is around that improvement.
But if the Bill isn't actually going to make us go backwards in other areas, then, obviously, the result will be to improve things generally and to build upon the work that you've just described, rather than to compete with it.
I would be concerned that if we had a specific autism Act that, actually, you'd lose the wholeness of somebody. There is a real risk of losing the wholeness of someone's needs and we're all focusing quite carefully or quite acutely on their needs in relation to their autism as opposed to their holistic needs, which the Social Services and Well-being (Wales) Act 2014 makes us do. So, from my perspective, we could end up with two pieces of legislation that could be competing with each other, which could cause real difficulties.
Because the social services and well-being Act makes us look at things in a very holisitic way, from actually what people can achieve and how we can support them to do that, whereas I think there's a real risk with a very clear focus on a diagnosis of a condition, which means in itself that you are unable to do something or are struggling in a particular way—it's quite a negative way of looking at things, as opposed to saying, 'Well, actually, let's look at you in a holistic form and everything you can achieve.' It is a different approach.
Yes, well, there are two aspects of this: there's the medical aspect on the one hand and then there is the social services aspect on the other. So, unless you have a system that is going to integrate the two, then you're never going to be able to replicate what you say is desirable.
And I think that could be done through the code of practice as well, in terms of how we can bring them together.
Right. We've heard evidence from Dr Dawn Wimpory that the Bill might actually benefit other conditions, as well as those who are suffering from autism, as everybody will have an individual assessment earlier—within three months. It's clear that one of the big problems with autism at the moment is the length of the waiting time for a diagnosis and assessment. Sometimes, these things go on for years, and in a system where resources are finite but needs may be regarded, to all intents and purposes, as infinite, there's no reason to think that that's going to change unless we have some external mechanism for raising the priority of autism sufferers.
Shall I just say that in terms of the integrated autism service, we have increased the priority around assessment? And so each one of those services through the guidance that was issued nationally has a team of health professionals that do offer diagnosis, which is what we've not had the resources to do before now. So, that is additional assessment capacity and resource. So, our aim is to reduce those waiting times for assessment anyway, irrespective of legislation, through our operations. I think the focus on assessment worries us operationally, because of that detracting from the post-assessment and diagnosis support that people so valuably need. One of our lived experience advisors working with us in Flintshire said that diagnosis is nothing if you haven't got the support. So, I think that, for him, having that assessment is important, and it clearly is, but to focus all of our resources into that would detract from the lifelong support that people might need after that.
But, of course, a lot of people think that, until you get to the point of diagnosis, you're not even on the starting blocks and you're just in a void. So, we need to cut the waiting times for diagnosis if we can, within the limitations of any spectrum condition and the time it takes to identify what the problem is.
I don't think any of us would disagree that timely assessment is what's needed. It's needed in relation to anybody's needs, so I don't think there's any disagreement around that whatsoever. It could be achieved through another mechanism. I think that's what we're saying.
Even if we didn't go ahead with the Bill and we simply relied upon the code of practice, as you would wish, is there not a similar danger that other conditions would be disadvantaged as a result of the success of the code of practice? Why is one different from another?
If it's encompassed within the social services and well-being Act, we have our performance indicators that we have to report on, we have timescales that we have to meet, and they are already reported through. For children, we have an assessment timescale around the social services and well-being Act. Locally, we've brought one in, and we've put exactly the same one in for adults because we're saying, actually, an adult should have the same assessment framework as a child; they shouldn't be kept waiting any longer. So, we've put those mechanisms in place, and there's nothing to say that that couldn't be built into the outcomes framework.
Very short. Obviously, you've talked about the IAS—three months or a year old—across Wales. Can you just briefly outline at what point, apart from in your internal assessments, they are going to be externally assessed?
They're going to be—?
[Inaudible.]—service in terms of evaluation, that's an ongoing process. I believe you've already had some evidence from Duncan Holtom, was it?
Yes, it's ongoing. It is ongoing.
Okay, turning now to a very important issue, which is the current funding allocation and service provision for autism in general—Angela.
I wanted to just ask a couple of questions around that. First of all, could I just ask to what extent the views of the WLGA membership have been taken into account in your submission to us for this evidence session, rather than just WLGA HQ?
Obviously, we've had ongoing discussions with our colleagues in ADSS and our colleagues the ASD leads, and with those who are working in the IAS services directly themselves. We've had some conversations with elected members around their views. So, there have been ongoing conversations around the autism Bill that have fed into our response from the WLGA.
And could you explain to me how the funding that you've received from Welsh Government has been deployed, because you are the gatekeeper for that funding, aren't you? So, can you explain—?
Could you explain what you mean by 'gatekeeper for that funding'?
No, we're not.
So, where does that £13 million or so go, or how has it been divvied up?
It's from the intermediate care fund, so that's held in the health budgets.
It goes straight from Welsh Government to the health budget. It doesn't come via the WLGA.
So, the WLGA has no locus in the spending of the £13 million. You don't administer it at all, you don't charge any administration costs, you don't keep all the services in-house—
We receive some funding from Welsh Government for our ASD development team, but the £13 million that is there for the integrated autism services goes straight from Welsh Government to the health budget, and then it's—
I think it's about £580,000.
It goes to the health teams, but then the local authority—. In north Wales, Flintshire is the host local authority, so Flintshire has a proportion of it that it needs to employ the non-health staff.
Okay. I'll tell you where my lack of clarity is. I'm just trying to track this money down, because it's more than opaque, if I'm honest. So, if you could explain how the system works for us, that would be really helpful, because what we're interested in knowing is how much of that money actually gets to the front line, because, to be frank, we wouldn't be having this discussion if all of these services were in place and all of the people on the autistic disorder spectrum and their families were getting the support that they needed. And let's be clear: the magnitude of the cry for help from this particular element of the Welsh population has been so loud, so deafening and is so big—that's why we've even got a Bill on the table. If those services were in place and everything was rosy we wouldn't be having this discussion at all, so if you can explain where that money is, that would perhaps help us to understand where the resource issues are.
Can I—? If I just start with the integrated care fund, when it initially came to fruition, it came into the local authority. It was then, a year later, transcribed into funding that went into the health board, and the health board administered it. So, each of the various health boards have a pot of integrated care fund. In the following year, so year 3, it was top-sliced for the integrated autism service, so every region was given a set allocation of that top slice to be able to develop the autism service in that particular region. So, it goes into the health boards and then the integrated services that are administered differently in different regions—. So, in north Wales, as Jo says, she hosts the provision, so they will draw down that funding. There aren't any additional management charges or anything that we put on as local authorities in respect of co-ordinating those services. So, Jo is the lead up in north Wales for us. We don't top-slice any of that for Jo's time. She's funded through Flintshire—the rest of us don't contribute to Jo's time. It's just a hosting mechanism with some additional responsibilities that Jo picks up. So, as much of it as we can—it goes into front-line delivery.
And are you confident that all of the top-sliced amount leaves the health board coffers and goes into the integrated autism service?
Absolutely. [Laughter.] Yes, oh yes.
Okay. So, now it's sitting in the integrated autism service, so it's administered by local authorities. Of that, then, once it's sitting—
Well, in north Wales, we have £561,000 per annum.
Don't forget that the £13 million is over two or three years; it's not £13 million per annum.
So, out of the £561,000, health will spend on the health staff and the local authority on the remainder. In terms of where that money goes, it's quite open, quite transparent: we have a staff team and that's it. There is no more money for anything in addition to that.
Of that £0.5 million—but it'll vary from area to area—what's the division between money going to health and money going to local authority delivery?
I know what the local authority slice is on mine. Cardiff and the Vale is a smaller area, so it's a smaller amount of money. Shoot me if I get the number wrong, because I don't do the overall one, but the local authority number for Cardiff and the Vale is £74,000 per annum, and that's out of £367,000, I think. I didn't come—this wasn't a finance meeting. [Laughter.]
Yes. So, that covers the health staff, which is psychologists, speech and language, occupational therapists, two specialist nurses, and so forth. In the local authority, there are five support workers within that, some part-time, plus the printing and their training needs and bits and bobs.
Twenty per cent to local authorities, 80 per cent to health. Does that ring true to you in the north as well?
I'd need to confirm that without giving you false figures—
It will vary.
Four health staff, and 11 local authority staff who are lower paid. But it will be a higher than 50 per cent proportion to the local authority.
It depends on your area.
Sorry. Because the Cardiff and Vale health board is only two local authorities; Gwent, for example, is a lot more local authorities but a single health board. So, it's not a directly comparable percentage, because the guidance was in terms of support per local authority area so that you could do that, but with a central health—. It has to be horses for courses.
Yes. Powys: a single health board, a single authority, but geographically huge.
So, the health board holds the money and then it starts to release it out to the integrated autism service, of which a chunk of it is kept for health provision for people with autism, the other chunk goes into the local authority, where it is then spent on signposting, support staff, et cetera. Does any of it actually drift into the school environment and into educational support within school for people with autism?
Within the team, the integrated autism service, there is—certainly in north Wales—an education specialist worker and there's also a specialist support worker for children. Their remit is very much to go and work in schools and with parents; that's what they do. So, the resource is the expertise of the staff who are in the team; there is no additional resource.
Okay. So, I'm going to give you a quick case example because I'm trying to understand where the money comes from. A little boy in a primary school, he's got quite severe autism, he has to come in after the school day starts and go home before the school day ends. He's not allowed on any school trips, or to go out and do any sport, because he needs to have at least one on one, if not one on two. Now, they haven't got the people to do that. I kind of thought that the point of the integrated autism service was that it was providing the extra money to drift down to that front line, but when I read the WLGA submission, it struck me that the money spend was about signposting, printing leaflets, hiring people who would give advice rather than the doing of the job. Is that right or am I being way too—? You're nodding, Jo.
You are right.
It's a crude picture, but, crudely, yes. Direct involvement with schools. We recently ran a course called Incredible Years, which is a parenting programme for parents of children with an autistic condition. That was a joint—. School and IAS staff were delivering that. All the IAS staff are trained in Incredible Years. We've just been running, jointly with Barnardo's, within the IAS actual building—the actual rooms—they've been doing a parenting programme, Cygnet, in there, for the parents of children with autism. That's being done. We're providing the room and IT and all that kind of thing.
But the parent with a child who needs that support—. So, the integrated autism service sits here, they still have to go and liaise with social services and the school and everybody else to get what they need.
That would be education.
We've got the ALN Bill coming through, and that is in train. There are some real opportunities through that, as well, in terms of trying to address the needs of children with very complex needs, such as the little boy that you described.
I'm not going to say that every local authority's got this right yet, but I know that a number of the local authorities are reviewing their social inclusion pathways, because there is a recognition that you don't just have to have a diagnosis to require additional support. In order to try and address the increased demand in relation to social inclusion, there is a need to look at the appropriate levels of support at the right times—so, calling on social care as well to actually work in a much more integrated way with education. My local authority, Denbighshire local authority, have joined their education and social care departments for that reason, to try and look at that holistic approach to a child and family's needs, and that would encompass people with ASD.
Sorry, can I just confirm something before we move on? Are you saying that the WLGA has absolutely no locus in this process of spending the £13 million over the next couple of years? You are saying this is just an automatic process that goes from Government, via the integrated care fund, to health and social services, and the WLGA has no role whatsoever?
I think the role that we've played is that, through the funding from Welsh Government that we receive, we've appointed regional co-ordinators, working with the regions in helping to establish and develop the integrated autism services. So, our role has been to provide some of the guidance, again working with Welsh Government and our colleagues. The regional co-ordinators have worked with the regions to support the establishment of the integrated autism services, but in terms of the funding, the funding doesn't come to or through the WLGA: it goes straight from Welsh Government. We receive funding to provide the ASD development team, so their role has been to support the development of the integrated autism services. We run an IAS lead network and we're undertaking work that will help the integrated autism services in terms of consistency of approach. So, one of our priorities moving forward will be to re-look at the ICF template—the reporting template—and what's fed back to Welsh Government for that spend. So, our locus is to support and enable around that, but in terms of the money, no.
Fine, and just one little rider on the back of that, because obviously there's quite strong criticism from certainly the voluntary and charitable sector out there that they've been completely sidelined by this whole IAS project. I wouldn't expect you to agree with that assertion, but that is a widely held assertion. So, how are we going to get—? I don't like the business of two sides, because we're trying to do the best for people on the ground, and if we had the services in place and everybody was happy, we wouldn't be having this clamour for legislation. So, some of this responsibility is there with people who are there to provide the services. Integrated autism services seem to be—as Angela said—a signposting issue and signposting to those very voluntary sector organisations that have been denied a voice in organising all these integrated autism services. Now, that is their point of view. You may not agree with it, but certainly that is what people on the ground are saying. So, how would you respond to that?
I think I'd respond to that—. I took over management of the ASD team at the end of last year, so just after the publication of the interim evaluation report. So, that has very much influenced how I want to see the team develop. So, I can't really comment on some of the work pre that. However, since then—. I agree with you that the third sector voluntary bodies are key in taking this work forward. They will bring and advocate on behalf of people with autism and those with lived experience, they challenge the work that we undertake and it has to be a partnership approach moving forward. So, I am concerned at some of the views that were expressed. I think there is some misunderstanding or miscommunication, I'm not sure.
I know through my colleagues who manage the ASD team that there's been a lot more engagement with the National Autistic Society since they came into post. That work will continue. They're actually working towards arranging a joint conference for next year. So, I do take that point and I think we do need to look at it moving forward, but I've also heard that some of the integrated autism services have some really good relationships with voluntary third sector organisations in their regions and locally, taking it forward.
I think, from my point of view, I am concerned at the responses that are there. I would like to meet with them to identify what those concerns are so that we can address them moving forward. Like you, I don't like two sides. We all have shared ambitions here, we've got a shared view and ambition as to what we'd like to see in terms of the experiences of people with autism. I think, from my point of view, that is being addressed and will be addressed again moving forward.
I'd also say I pick up on Angela's point around the opaqueness of budgets, and I'd be happy to write to you, Chair, to set out some of the work. I know that the team circulated their annual report to all Assembly Members in July, which sets out the work that they undertake, so, the Learning with Autism and some of those schemes that are operational and are making a difference to people. Again, we've got testimonials from people who've said about the impact it has had on them, their children's schools, the school environment. So, I take the point. I'm more than happy to provide some more information to the committee around the budgets we receive on that basis, but, as I said, moving forward, certainly, together is the best way.
Can I just make one—? You were talking about working jointly with—. This is an example of working jointly with the National Autistic Society: in Cardiff, we have a specialist day service that we've set up jointly—not set up jointly, but we worked with the National Autistic Society to set up a specialist day service for adults with autism. It started as a small unit with about 12 places and everybody in there was 2:1 support. That was Tŷ Ddraig. We then soon realised that that was going to bedblock awfully quickly and that these individuals needed the opportunity to progress and move forwards. We worked with the NAS to look at numbers and to plan where we were going, and for people coming through transition to have a thing called Tŷ Yfory. That allows people to either move directly into Tŷ Yfory or to transition out of Tŷ Ddraig when they're more managed and better able to cope. That's working jointly with them, and then working very closely with the NAS in that they provided training, so that it was a nice, seamless transition into the complex needs day service, which is actually run directly by the council. That allows a pathway and a process, and that's been going on for some years with the National Autistic Society. Generally speaking, people in Tŷ Ddraig and Tŷ Yfory will be jointly funded 50:50, health-local authority, with some variation, but it was decided that we were not going to play tennis with these individuals; some will be 60:40, but on average they're going to be about 50:50 and that allowed us to work out—. I cannot speak too highly of the work that we've been able to do with them and the co-operation, and that's a big, big thing.
Good. We're running short of time. One more question, Angela, and one from Rhun to wrap up—
When you put forward your financial analysis, could you just make it crystal clear so that I understand whether or not your £0.5 million is part of that £13 million or whether £13.5 million is dedicated to autism support within Wales, because I'm still not actually clear that I've got an answer to that?
In your evidence, you said,
'We believe that legislation such as the Social Services and Well-being (Wales) Act 2014, the Additional Learning Needs and Education Tribunal (Wales) Act 2018, the NHS (Wales) Act 2006 and the Equality Act 2010 should, if they are working correctly, deliver for all our citizens on the basis of need.'
Well, we're here, so that's obviously not working. And, one of the things that we believe might help it to work and one of the areas is the whole area of putting targets in for assessments. And you believe that this is an imposition of timescales. Can you explain why you think that 26-week targets would not be the right way forward? This new Bill that's being proposed doesn't require diagnostic assessments to be completed by a particular timescale; it's talking about the first referrals. So, can you just give an overview of why you think that having that spur to the delivery of all these services that all these Acts are supposed to allow us to deliver wouldn't help?
Yes, sorry, okay. We need to go at people's pace. That's the bottom line for me. Having worked as a practitioner since I was the age of 17 and worked with people with very complex needs since that time, I'm very clear that you go at somebody's pace, and that can take an awfully long time to actually get a very thorough and proper diagnosis in place.
But we're not asking for a diagnosis. This is about a referral, just to get into the system. Because I do accept that, actually, some people will take a long time to be—
You will need to take that time. But even just getting to the point where somebody might want to accept that a referral is required can take—. It takes an awful long time to get people to that point where, actually, they can see that there may be an issue that may need to be addressed.
But that's not what the issue is, is it? Because it's all about people saying, 'We need to be assessed and we can't even get to a referral.'
The important thing is in terms of what a family is going to want out of this. Families are going to want to get to the diagnosis point in a timely manner. Simply saying, 'Start the process, have a letter, have a phone assessment' or whatever, I'm not sure that that's going to be satisfactory to a family or an individual. It should be timely.
It's also the performance indicators that are done already through the social services and well-being Act.
Yes, which is five years old and people are still complaining, okay, so that's why we're here. Rhun.
I was going to ask about financial implications. I know that you have concerns about financial implications. Your written evidence talks about you seeing the £7 million mentioned in the explanatory memorandum as being a significant amount of money. But, just so that I can have an idea of where your concern really lies, where's your balance of concern? Is it between the principle—? Are you mainly worried about the principle and whether this is the right thing to do, or are you more worried about the deliverability of it, including the financial implications and what having to deliver this would mean in terms of the public purse?
I think in the first instance it is around whether the Bill is required or not. That will be a decision for the National Assembly for Wales moving forward, and should the Assembly move forward with that Bill, then we'll need to look at the financial implications of that in more detail. So, it is a two-stage process as well within that.
I think what has been said so far is, I think—correct me if I'm wrong—that there wouldn't be additional funding from Welsh Government around that, so if there is a finite pot of money, what is the best way in which that can be spent to have the most impact and lead to the improvements in that way? So, I think it is a two-stage process that we'd need to look at. I think our view is that we just don't think that the Bill is required at this time.
The money—. I understand the concern—it's a big pot of money, and it should be able to drive improvements, and it's there at the front line where it needs to be in that way. So, I think it's a two-stage process and we'd say, actually, if the Bill is passed, then we will need to look at where the funding will come from in terms of any new burdens that are actually included within the legislation.
Very, very briefly, then. In that regard, in terms of the importance of the driver, almost like education consortia, it seems to me, but in terms of those integrated autism services, what would strengthen them considerably to make them absolutely, 100 per cent fit for purpose?
Well, they're there, aren't they? That's what we've got. What can we do with that to make it work better?
I think, going back to the point around it not providing support workers—. The example was a little boy that was given; that would be an example that, if we had the money, we would be able to offer support as well as all the expertise and signposting that goes on. The code of practice, the guidance that we operate with, that's robust, and that's going to help us to deliver consistency across north Wales and to maintain that focus. Attitudes of people—if we can change some of those attitudes within the public, that would help us enormously in terms of people being able to access ordinary activities and occupations.
So, there's a long list, but those are some of them.
Okay. Great. We're out of time. Thanks very much. An excellent paper, and obviously some more information to follow, because, as I said at the start, this is Stage 1—whether we have this Bill or not. But lots of the evidence so far has been about, 'Well, if the services were there, perhaps we wouldn't need a Bill', and so that's where the question is coming from, particularly as regards WLGA involvement in the provision of the £13 million. That has been particularly poignant, and any information would be gratefully received. So, thank you very much indeed for your attendance, and also for any subsequent information coming our way, because it's also our job to scrutinise where all the money goes, and sometimes it's a bit difficult to follow. Thank you very much. Diolch yn fawr.
Thank you very much.
Gohiriwyd y cyfarfod rhwng 11:08 ac 11:14.
The meeting adjourned between 11:08 and 11:14.
Croeso nôl, felly, i'r adran ddiweddaraf o'r cyfarfod yma o'r Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 4 erbyn rŵan, sef parhau efo ein craffu ar Fil Awtistiaeth (Cymru). Mae'r sesiwn dystiolaeth ddiweddaraf gyda'r gymuned ymarfer diagnosis oedolion ac ymarferwyr gwasanaeth awtistiaeth integredig. Ac i'r perwyl yna, rwy'n falch iawn o groesawu Dr Nicola Griffiths, seicolegydd clinigol, gwasanaeth awtistiaeth integredig Gwent; hefyd Sian Lewis, rheolwr gwasanaeth, gwasanaeth awtistiaeth integredig Gwent; hefyd Dr Rona Aldridge, secolegydd clinigol, arweinydd clinigol ar gyfer gwasanaeth awtistiaeth integredig Caerdydd a'r Fro; a hefyd Wendy Thomas, arweinydd proffesiynol cenedlaethol ar gyfer awtistiaeth. Croeso i'r pedair ohonoch chi.
Diolch yn fawr iawn am y dystiolaeth ysgrifenedig ymlaen llaw. Mae yna doreth o wybodaeth, ac mae Aelodau wedi bod yn craffu'n fanwl ers wythnosau ar y pwnc llosg yma. Wrth gwrs, rydym ni yng Nghyfnod 1 y drafodaeth ar Fil Awtistiaeth (Cymru), ac, yn y bôn, yr hyn rydym ni'n ei drafod yng Nghyfnod 1 ydy a oes angen Bil awtistiaeth ai peidio. Felly, dyna ydy'r cwestiwn mawr rydym ni fel pwyllgor yn gorfod mynd i adrodd yn ôl i'r Cynulliad arno ar ddiwedd y Cyfnod yma. Wedyn, dyna pam rydych chi yma. Ac, fel sy'n draddodiadol, awn ni'n syth mewn i gwestiynau, ac mae Neil yn mynd i ofyn y cwestiynau cyntaf. Neil.
Welcome back, therefore, to the latest section of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We've reached item 4 by now, and we continue with our evidence sessions on the Autism (Wales) Bill. This session is with the community of practice for adult diagnosis and integrated autism service practitioners. To that end, I'd like to welcome Dr Nicola Griffiths, clinical psychologist with the Gwent integrated autism service; Sian Lewis, service manager with the Gwent integrated autism service; Dr Rona Aldridge, who is a clinical psychologist and the clinical lead for the integrated autism service of Cardiff and the Vale; and Wendy Thomas, national professional lead for autism. Welcome to the four of you.
Thank you very much for your written submission. There's such a lot of information to get through, and Members have been scrutinising deeply for weeks on this contentious issue. So, we're at Stage 1 of the discussions on the Autism (Wales) Bill, and, essentially, what we're discussing in Stage 1 is whether we need an autism Bill or not. So, that's the big question that we as a committee have to report back to the Assembly on at the end of Stage 1. So, that's why you're here. And, as is customary, we'll go straight into questions, and the first questions come from Neil Hamilton. Neil.
Diolch yn fawr, Cadeirydd. I'd like to start by asking about your statement that making the strategy a statutory requirement will add no value and the proposed legislation is unnecessary and unhelpful. Those are quite strong statements. I wonder whether you could expand a bit upon why you oppose the Bill, or why you're negative about it in that way.
Firstly, I'd like to say, on behalf of the community of practice, that you will be hard pushed to find a group of professionals and support staff who are bigger advocates of people with autism. And most of us have worked in the field for 20-plus years, and we're absolutely dedicated to improving the lives of people with autism. This includes improving diagnostic waiting times, improving group and individual interventions, improving access to support for parents and carers, absolutely improving the knowledge and skills across the care pathway, amongst a number of other things. However, we do not feel that the Bill is necessary to do that, because we feel that we already have things in place. The integrated autism service is set to deliver many of those things. Where the integrated autism services are up an running, we're doing that. We have lots of positive feedback, and we feel that bringing the Bill in at this stage will have a detrimental impact—unintended consequences, I guess—on what we're trying to do at present. So, we're very much in support of the ideas in the Bill; we just don't think it's necessary in order to provide what it's stating that it will provide.
Well, you're obviously aware that the reason that we have a Bill is because autism sufferers and their dependants, and so on, feel that they are the cinderellas of the health service at the moment, and I appreciate that there are things in train, which we will take time to fully work through. But why do you see the Bill as being in competition with what's going on at the moment, rather than as something that is complementary to it and actually helps you to raise the priority for autism sufferers within the system?
I think it's the unintended consequences of the Bill that we would be concerned about. So, as an IAS that's been up and running for the past 12 months and achieving some significant changes in the quality of life of individuals with autism, we're very concerned that the legislation, which focuses on timescales rather than the quality of the service that's going to be delivered, is going to cause us to take a backwards step. We would be struggling to provide a support service if we have to concentrate on starting diagnostic assessments within a 13-week time frame. I think we'd all be concerned about perhaps putting things in place that are not best practice, such as sending out forms in order to comply with that, or bringing people in for an initial meeting to discuss their possible diagnosis.
At the moment, while there's a long wait for our service—I can't deny that, and I can promise you the team behind me is doing everything they can to improve on that—where we've got good evidence, where we've got a multidisciplinary team sat in the assessment, we are able to give people a diagnosis on their first appointment. Yes, if it's complex, and yes if there are comorbid difficulties, we may need to go and seek advice elsewhere, but we can give them that support on that day. They can come back in six weeks' time and have a post-diagnostic appointment, where we can really start discussing a plan to support their needs, where we can have the right professional at that meeting. So, if the person has social communication issues, we can have the speech and language therapy present to do that post-diagnostic appointment. We have very little waiting time for support—they can come in and have support in the way that they choose it. They can have one-to-one support in their own home, they can come to a group, they can come to a drop-in session, they can have it out in the community. We can help them to access support that's already out there. So, we feel that actually concentrating on a time frame is going to push all of that practice backwards.
Just a supplementary—sorry, Neil—before we move on. Angela. I'll come back to you, Neil.
Yes, just on that, because we've been listening to evidence today and, indeed, last week that said autism is incredibly complicated and you simply can't make that diagnosis in the one meeting, which you've given me the impression that we can. We were just listening to representatives from the ADSS and, before that, it was the GPs who were saying it's something that has to be diagnosed over a very extended period and so on and so forth. Could you just clarify that comment, please?
So, I think it depends on how your diagnostic clinic is set up. So, we have to adhere to the NICE guidelines, which very clearly state what is expected of a diagnostic assessment. So, each service will set it up slightly differently. We have our assessments one week on a Tuesday and maybe the next week, and if it's complicated, we may need further assessment. In Gwent, I understand that they will have multiprofessionals in one assessment and, if you have a lengthy assessment on that day, it is possible sometimes to conclude at that point. It's not really about whether it's on the day or the week after, the idea is about adhering to what we already have in the NICE guidelines. There are very clear, very well-researched standards and the integrated autism services are adhering to that. The clinicians are very well trained individuals and it's a multidisciplinary assessment. So, it is possible to give a diagnosis on one day; it's about how you do that that I think is key.
And it requires having the informant present, good history taking, and availability of different tools on the day. So, we've sometimes stopped using the diagnostic interview for social and communication disorders—the DISCO clinical interview— and we've moved to using the autism diagnostic observation schedule, because the equipment is on-site and that will better suit the person who's presenting in front of us, rather than perhaps then stopping that assessment and inviting them back in three weeks' time to use a different tool. We try and have all that on-site that gives us that flexibility in order to do that.
Others may take up some of the points that you've made in a second. I'd like to go on to ask you about the statutory code of practice on ASD that the Welsh Government is intending to introduce. What are your views on this? What do you see as the key differences between the Bill and this forthcoming code of practice? Why shouldn't the code of practice have some of the adverse impacts that you foresee for the Bill if it's enacted?
Because the Social Services and Well-being (Wales) Act 2014 has the potential to deliver all the things that are in the Act already. If, then, it's back to the statutory code of practice, actually, it's very clear what that Bill has to deliver. When I had conversations with people working several years ago in the NAS, they were saying, 'People weren't adhering to the social services and well-being Act, that's why we needed an autism Bill.' I said, 'Well, if somebody isn't adhering to an Act, what you do is enforce that Act; you don't have another Act, because they might choose not to enforce that one either.' So, if you've got a code of practice that's very clear about what people have to deliver and that people are measured and inspected on that, then it'll deliver everything and probably more than is on the face of the Bill as we have it.
Diolch—thank you. We've had evidence from people suffering from ASD and their families that the IAS is more of a kind of signposting service for online information rather than giving people practical face-to-face support. Is that how you see it? What was your reaction to that criticism?
The IAS has a number of different roles and responsibilities. We have quite a wide remit to deliver within. So, I guess we have the direct work that we provide, which would be diagnostic assessments of adults, as well as individual and group intervention. Sometimes, that intervention is about signposting and supporting them to other services, because it doesn't make sense for a specialist autism service to be supporting everybody with autism. It's not sustainable, it's not possible and it's not about working alongside other services. Sometimes it's about signposting, but it's not only about signposting.
For example, in quarter 1 of this year in Cardiff and Vale IAS, we supported 147 individuals in the service. That was face-to-face and that was not including diagnosis. I think there's been some inaccurate information that we've noted in Plenary sessions. I think it was noted by Mark Isherwood recently that we only offer telephone support and consultation; that's not accurate information. It was also noted that only 10 referrals were received by the IAS, again, in June by Mark Isherwood; that's completely inaccurate information and we have accurate data here. There seems to be a bit of a miscommunication about what we're actually doing and what is reported in Plenary, and we'd be really happy to provide those figures and that information if people want them.
But, it's not just a signposting service, we support very complex individuals. We support them, jointly sometimes with mental health, where indicated; we support them in groups; we provide a number of groups in Cardiff and Vale, as they do in Gwent; and also we provide huge amounts of support, consultation and advice to professionals across the care pathway, whether it's in mental health, whether it's in social care, learning disabilities or third sector organisations. So, I think the remit we provide is large and some of it is signposting, but that's a very, very small percentage of what we do.
I'd just like to refer you all back to the submission from Gwent, which actually includes feedback from an individual who we have supported who'd spent a long time in secondary mental health services, and clearly demonstrates the one-to-one support that was provided to her. We've asked her to provide this feedback, just a standard feedback to the service, and when we opened it it was two pages long. I think it very eloquently and clearly demonstrates, from a service user's point of view, the difference we've made to her life and how we've supported her. We can't offer her exactly what she needs, but we've supported her back into secondary mental health services and the local authority, with those staff having a better understanding of her need and providing a much better support plan for her, going forward. So, I think that clearly evidences, from an individual's point of view, how successful—and the outcomes our service can achieve.
And just a very quick visual representation: this is someone else who we've supported, and this is the outcomes star that we are now adopting across the whole of Wales. The inner circle is where the person started off from and the outer circle is where the individual has left our service. It's showing improvements in seven out of the nine areas of quality of life under the outcomes star, and that was achieved in seven visits over 10 weeks by us or a support worker.
And I'm really, really pleased to see that and to see that there are some people out there who are having their lives transformed. But let me be really clear about the fact that the reason we're sitting around this table is because, of the 34,000 people in Wales on the autistic spectrum disorder, a substantial number do not feel that they're getting it. So, I don't want us to set a par that everything is okay, because we wouldn't be here otherwise. And I want to say that, before we started our committee meeting this morning, we listened to the National Assembly focus group—not run by us, not run by any politician with any possible agenda or whatever, but by the Commission staff here, and the stories they came back with were shocking and sad and demoralising, and we see them in our committees. So, I'm really pleased that there are success stories, and I do not doubt for one nanosecond that there are services out there that make a tremendous difference to people's lives, but there are a heck of a lot of people out there who are not having any difference made to their lives.
Angela, I don't think we would disagree with that. Absolutely, I would not disagree with that. There is a lot to be done, lots of people are not accessing what they need or what they want, across the board for people with ASD. But the point is not that that's not true: we know that's true. The point is that there is a huge amount of good work that's being done, that's being misrepresented, so that information is not accurate about the integrated autism services, and the inaccurate information is pushing a lot of people towards supporting the Bill. So, we want to counter that inaccurate information. That doesn't mean that we don't support the fact that services need to improve. That needs to happen. We're a long way off things being even near to perfect. I guess the point that we're making is we do not think the Bill is needed to do this, and we think it's going to have consequences for what we're already doing, and we've only touched on a part of it. We haven't talked about evaluation, research, links with other services—[Interruption.] So, I don't think we're disagreeing on that point. I think we absolutely agree on that and we're autism advocates of the highest order.
Can I say as well—I think a lot of the dissatisfaction quite often is from families and about accessing education? The Additional Learning Needs and Education Tribunal (Wales) Act 2018 is due to be implemented, and the ethos of that Bill is to address an awful lot of the issues that are coming through from families with autistic children, because that Bill is around being child-centred and person-centred around the needs of that child. All children will have an individual development plan and all the interventions will be based on the presenting issues that child has, whether they have a diagnosis or not. But that Act hasn't actually been implemented yet, so I think to actually put some of this in place before that's implemented is almost putting things in place for things that we hope that Bill will address.
I do understand that, but the social services Act has been in place and we still haven't seen the changes.
But the social services and well-being Act isn't around diagnosis either, is it?
But a lot of the issues are around diagnosis.
Just to make the point that if the social services and well-being Act still hasn't been fully implemented, and that's been legislation for some time, is bringing in another costly legislation actually going to make the difference? I would argue not.
Can I just clarify, Wendy? So, what you're saying is that diagnosis will be less of an issue once the ALN Act is actually working—is that what you're saying?
Yes. I'm seconded into doing this role; my substantive post is I work in social services and children's services, and I work across health, education and social care. An awful lot of the issues that come through are parents wanting a diagnosis to access education provision. I agree with that. I don't think—. My argument is always that diagnosis shouldn't be the thing that accesses services; services should be there for the need of that child. This is just my personal opinion: I actually think the autism Bill is driving it down a diagnosis path, and I think that goes against the whole ethos of things like the additional learning needs Act.
Cwestiwn ynglŷn ag amseroedd aros sydd gen i. Rydym ni wedi clywed o waith y grŵp ffocws fod pobl yn teimlo bod amser aros yn gallu bod yn flynyddoedd i aros am ddiagnosis yn broblem fawr:
A question with regard to waiting times, that's what I want to ask. We've heard from the work of the focus group that people feel that waiting times maybe being years of waiting for a diagnosis is a big problem:
'I lost decades of my life without knowing why.'
'If I had been diagnosed earlier, I wouldn’t have had the problems I had.'
'No access to diagnosis and excessive delays.'
'It took 2 years to get diagnosis,'
—ac yn y blaen ac yn y blaen. Onid ydy hi'n rhesymol bod pobl yn dymuno gweld diagnosis yn digwydd yn gyflymach, ac onid ydy hi'n rhesymol felly fod yna Fil o'n blaenau ni sydd ag un o'i brif themâu o yn ymwneud â sicrhau bod y diagnosis yma'n cael ei wneud yn gynharach?
—and so on and so forth. Isn't it reasonable then that people wish to see diagnosis happening sooner, and isn't it reasonable then that there's a Bill in front of us that has as one of its main themes ensuring that that diagnosis does happen sooner?
I think, if you ask people with autism whether they'd like—certainly with the people we work with—a more timely diagnosis and then no support afterwards, or whether they'd like it to take longer for the diagnosis and then have support in place, I think they'd probably choose the latter.
It seems to be, because there's a finite pot of resources and the unintended consequence of the Bill might be that those resources would need to shift the diagnostic side of the service and leave the support side.
I asked the last witnesses, actually, for the balance of where their concerns were: whether they were worried about the principle, whether this was the right thing to do, or whether they were worried about the deliverability of it, that this wasn't really practical—it would be very nice but we can't do it. It seems from what you're saying that that's the main worry here; we haven't got the resources to make it happen.
In an ideal world, you'd have a timely diagnosis and comprehensive support following that.
Okay. Any more comments on that—'What's in the Bill is a good idea, let's push for quicker diagnosis, but it just can't be done, therefore, the Bill is just not going to be able to be enacted properly'?
I think it's been clear that there's going to be no extra money that comes along with the Bill, so our question to you would be, 'What do you want us to stop doing if you want us to meet the diagnostic waiting time of 13 weeks?' Again, if you can give us extra money to clear those waiting lists—not just money, actually, let's be clear about the fact that it's about recruitment as well and it's about having suitably qualified staff to be able to assess and diagnose. Actually, in order for us to be able to increase the number of people who are available, we need to also have time to provide placements to students to be involved in other services, to work alongside other professionals so that—[Interruption.]—it's too close, too enthusiastic—[Laughter.]—so that there's a higher number of people who might then be available to work in diagnostic services. So, currently, even if you put more money in, actually, you're going to still struggle with recruitment. That's a fact.
But isn't there a danger that what we're doing, therefore, is deciding to do nothing?
Well, we're doing a huge amount, actually, so we would—
I don't doubt that for a second, but you're also doing a lot with very few resources. Wouldn't having the Bill put pressure on the Government to make sure that the resources were available and so on?
But, again, it's about being diagnosis-driven, not around the needs of the person. I think, from a personal point of view, that, actually, it's the needs of the person. A lot of people are pushing for a diagnosis because they think that's how they'll get services. If you speak to lots of parents, in particular, they always say that; they think they'll have services if they have a diagnosis. What we should be aiming for is for the services to be there for those children whether they have a diagnosis or not.
I'll tell you what, I'm a layperson in all this, and that's coming out very consistently, I have to say, in the evidence that we're hearing today. We are, though, expecting, aren't we, in the new Welsh Government code, new waiting time standards for adults. I believe there are no waiting time targets now. You think that this is okay—to have the new waiting time targets for adults.
Okay. Presumably, that's not going to be coming along with a big new briefcase of cash either. But you're comfortable with that new target.
I think it's going to be a challenge for some areas. So, we're currently within about six to eight months—although, actually, our referral rates are increasing. The minute you have a new service, you have an increased number of referrals.
Okay. So, why the difference between being relaxed about that and saying, 'Right, this is a challenge, let's see if we can meet it' and, actually, having a statutory challenge, if you like, and saying, 'Right, we've got to meet this'?
I don't think anyone's relaxed about that, actually. I think we're probably worrying about how we're going to do it. We're thinking very carefully, we're thinking very creatively, we're trying to increase our diagnostic output by getting input from other services as well. I don't think anyone's particularly relaxed about that, we'll be honest. That's going to be a challenge and I suspect it's going to be really hard for people to meet, if we're honest. It is going to be hard.
Have you protested against it as you are—? Protesting is the wrong word. Have you—
We haven't had a chance yet. We haven't had a chance yet.
We have. Being that the service has been open for a year, I have raised it at integrated service leads meetings, through the community of practice and with Julie Annettes, that, because this service has never existed, we can anticipate that we are going to see a huge number of people coming through the doors of our service who have never had an opportunity for a diagnosis. So the 26-week diagnostic timescale is aspirational for now, but it's a finite pot of people. Those referrals will drop down in time to come and we would aim to meet the 26 weeks. We have teams behind us who really want to make a difference to people's lives and don't necessarily see that we need legislation to do that. When you're coming from person-centred practice as a practitioner, we would all want that.
Well, I think a lot of my questions have been answered, but the only question I'd like to ask you is—. Dawn Wimpory, in her evidence, said that one of the benefits of having a timescale on the referral could be that you would, actually, more quickly, be able to weed out any inappropriate referrals of people. And I just wondered what your view was on that.
We're already doing that. So, we've got quite a robust screening process and, for the 137 referrals that we've received since 1 April, there's another 30 that we haven't, because, despite going back and giving people different opportunities to provide us with that evidence, we still haven't felt that it's robust enough, so we've not accepted those. We've been up and running for a year, so we've already had the chance to learn from those and put those things in place.
I didn't hear exactly what Dawn Wimpory had to say about that, but, I think, if the idea is that you have an initial appointment with somebody within 13 weeks and that, at that point, you can divert them away from a full diagnostic assessment, I don't think that's possible. People want to feel that they've had a thorough assessment that's been done. So, if you meet somebody and it's very clear that they might not have autism, that person still has the right to an assessment as defined by the NICE guidelines, so that would need to be a full assessment if you're going to be diverting people away at that point, unless it's just an inappropriate referral, but that shouldn't wait 13 weeks for us to determine if it's an inappropriate referral.
The other thing is that you will find that services will very easily fudge the numbers. We will make a phone contact, or you'll send out a questionnaire, and you could say that the assessment started in 13 weeks. I don't think that's appropriate. I think the assessment should be started and finished in a good time frame. We could easily report that assessment started in 13 weeks, but I don't think that's what anyone wants.
Excuse my voice. I was going to ask you about data collection, because I think you say that you don't believe the provisions in the Bill are necessary. So, what's your reasoning behind that?
I think we've moved a long way since the evidence that was informing the Bill, because with the IAS and the neurodevelopmental service, there are data sets and processes being developed. There's data capture; there are reporting frameworks there. In the adult diagnostic network, there is a pathway in place and there are different points on that pathway where we capture the information. And, in addition, one of the integrated autism services is going to be piloting the recording and reporting framework on the Welsh Community Care Information System. So, WCCIS will be the reporting mechanism for all the services when it's rolled out across Wales. And also, what we're doing—. The information in the Bill was just around diagnosis. A lot of the information we're collecting is around outcome measures, around presenting themes, around information that you can actually use to inform planning and commissioning, because diagnosis just tells you the number of people that are being diagnosed. So, the data sets we're doing—. So, the data we'll have, we'll have far more robust data sets. We'll have a lot more data we can use.
Also, several autistic people have spoken to me, and they're very concerned about the amount of data that would be on a system about them, and they don't feel comfortable with that—they're not happy with that—and it's about how compliant that system that's outlined in the Bill is around the General Data Protection Regulation and consent. Because I was rather concerned about it, when we were in north Wales, we spoke to Dr Dawn Wimpory about it, because I wondered how they got consent, and she said that the consent was, when a parent signs that a child has their immunisations, then that is giving consent, but you can't give consent for life. Under GDPR, you have to consent specifically for a specific purpose, and that person has to give consent themselves. So, when a child becomes 13, they have to give consent themselves. There isn't the provision in the Bill for that, so it felt as if it was gathering data on diagnosis and that was it, not all the other things around it, and there are major concerns—and I spoke to people— about who owns the data, what it's going to be used for. People felt that they were on a register, and they felt that they weren't going to have any sort of control over that. GDPR is very clear. You cannot collect, store or share data for data's sake. So, it has to be, when you collect data, it's for a specific purpose for a reasonable time, and then you need to know where it's going and what happens to it.
So, if you look at that, the Bill also refers to anonymised data, and then lists things that can clearly identify people, because people have said they were really concerned that their NHS number would be used, because that's a unique number just to them. They felt—I mean, I don't know; this is how they felt about it—that, actually, we don't do this to anyone else, so why are we doing it for autistic people? Why have we got a register of autistic people? And they felt they were being singled out, but not in a good way, because they couldn't see what the point of having all that data was if they weren't going to be used for something constructive. As I said, the element on it is very much around diagnosis. So, for example, if you're looking at planning support services, just having a diagnosis doesn't tell you anything. What you need to know is the impact of that condition on that person, and where that person is located in the community, what else is out there, what the needs of that specific person are. So, the data wouldn't give you that either.
Thanks, Chair. In your written evidence, you said that the Bill could be seen as positive discrimination and that, by adopting the NICE quality standard as the basis for legislation, anyone with ASD will have an entitlement to these and a standard of service that no-one else will, i.e. a named key worker. But the Bill just refers to timescales for assessment that are set out in the NICE quality standard. Have you misinterpreted what the Bill is seeking to achieve?
I think the point about the Bill being discriminatory was the fact it's for a single group of disabled individuals and that, conversely, then, if other groups of individuals feel that people with ASD have more rights to service than they do, we will start to see lobbying from other service user groups for similar legislation. The social services and well-being Act was meant to make it less complex for the professionals working in social care and health, and for the people accessing that service, so, if we start introducing other bits of legislation, we're going to be back to working our way through which is the most relevant Act to use. It's going to be complex for families. It's going to be complex working in. And it was about positive discrimination, that they're getting something that other service user groups won't have an entitlement to, and where would that then leave us? Are Welsh Government going to keep introducing other forms of legislation when, actually, the social services and well-being Act was meant to be the way forward for social care?
They haven't in Scotland. I mean, the reason they ruled out having an autism-specific Act was that they felt that it was just singling out one sector of the community and it didn't cover people with other neurological conditions or people with other needs.