|Angela Burns AM|
|Dai Lloyd AM||Cadeirydd y Pwyllgor|
|Dawn Bowden AM|
|Julie Morgan AM|
|Lynne Neagle AM|
|Rhianon Passmore AM|
|Dr Dawn Wimpory||Bwrdd Iechyd Lleol Prifysgol Betsi Cadwaladr, a Darlithydd, Prifysgol Bangor|
|Betsi Cadwaladr University Local Health Board, and Lecturer, Bangor University|
|Dr Duncan Holtom||Pobl a Gwaith|
|People and Work|
|Dr Elin Walker-Jones||Bwrdd Iechyd Lleol Prifysgol Betsi Cadwaladr|
|Betsi Cadwaladr University Local Health Board|
|Gareth Morgan||Autism Spectrum Connections Cymru|
|Autism Spectrum Connections Cymru|
|Jane Harris||Cymdeithas Genedlaethol Awtistiaeth Cymru|
|National Autistic Society Cymru|
|Meleri Thomas||Cymdeithas Genedlaethol Awtistiaeth Cymru|
|National Autistic Society Cymru|
|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 gyda Chymdeithas Genedlaethol Awtistiaeth Cymru ac Autistic Spectrum Connections Cymru||2. Autism (Wales) Bill: Evidence session with The National Autistic Society Cymru and Autistic Spectrum Connections Cymru|
|3. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda Dr Duncan Holtom||3. Autism (Wales) Bill: Evidence Session with Dr Duncan Holtom|
|4. Bil Awtistiaeth (Cymru): Sesiwn dystiolaeth gyda Dr Dawn Wimpory a Dr Elin Walker-Jones||4. Autism (Wales) Bill: Evidence Session with Dr Dawn Wimpory and Dr Elin Walker-Jones|
|5. Cynnig o dan Reol Sefydlog 17.42 i benderfynu gwahardd y cyhoedd o weddill y cyfarfod hwn||5. Motion under Standing Order 17.42 to resolve to exclude the public from the remainder of this meeting|
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 09:36.
The meeting began at 09:36.
Bore da i chi i gyd a chroeso i gyfarfod diweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. O dan eitem 1, dirprwyon a datgan buddiannau ac ati, fe allaf i gyhoeddi ein bod wedi derbyn ymddiheuriadau oddi wrth Rhun ap Iorwerth ac nid oes neb yn dirprwyo. Mae Dawn Bowden ar ei ffordd ond wedi cael ei dal ar yr hewl. Rwy'n credu fel pwyllgor y dylem ni fod yn diolch yn ffurfiol i Jayne Bryant am ei chyfraniad dros y blynyddoedd diwethaf, ac mae hefyd yn bleser croesawu Rhianon Passmore fel aelod o'r pwyllgor yma yn ei lle hi. Felly, croeso, Rhianon.
Symudwn ni ymlaen felly i feddwl am weddill y cyfarfod. Yn naturiol, mae pobl yn gwybod bod y cyfarfod yma'n 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. Mae'r microffonau yn gweithio yn awtomatig, felly nid oes yn rhaid i neb eu cyffwrdd nhw. Os byddwch chi'n clywed larwm tân fe ddylem ni ddilyn cyfarwyddiadau'r tywyswyr.
Good morning everyone and welcome to the latest meeting of the Health, Social Care and Sport Committee here in the National Assembly for Wales. Under item 1, introductions, apologies, substitutions and declarations of interest, I can announce that we have received apologies from Rhun ap Iorwerth and there is no substitute today. Dawn Bowden is on her way but has been caught up in traffic. I think as a committee we should formally thank Jayne Bryant for her contribution over the last few years, and also say that it's a pleasure to welcome Rhianon Passmore as a member of this committee in her place. So, welcome, Rhianon.
Moving on, therefore, to the rest of the meeting, naturally, you'll know that this meeting is held bilingually. You can use the headphones to hear the interpretation on channel 1, or to hear contributions in the original language amplified on channel 2. The microphones work automatically, so you do not need to touch them. If you hear the fire alarm, we should follow the instructions of the ushers.
Felly, gyda cymaint â hynny o ragymadrodd, fe symudwn ni ymlaen at eitem 2, Bil Awtistiaeth (Cymru). Mae hon yn sesiwn dystiolaeth gyda Chymdeithas Genedlaethol Awtistiaeth Cymru ac Autistic Spectrum Connections Cymru. Felly, i'r perwyl yna rydw i'n falch iawn o groesawu i'r bwrdd Jane Harris, cyfarwyddwr materion allanol a newid cymdeithasol, Cymdeithas Genedlaethol Awtistiaeth Cymru; Meleri Thomas, rheolwr cysylltiadau allanol Cymru, Cymdeithas Genedlaethol Awtistiaeth Cymru; a hefyd Gareth Morgan, rheolwr prosiectau, Autism Spectrum Connections Cymru. Croeso i chi i gyd a diolch am y dystiolaeth ysgrifenedig rydym ni wedi ei derbyn ymlaen llaw. Mae yna gryn dipyn o dystiolaeth rydym ni wedi bod yn mynd drwyddi fel Aelodau fel rhan o'r siwrnai yma rŵan i ymdrin â'r Bil awtistiaeth. Felly, yn ôl ei harfer, fe awn ni'n syth mewn i gwestiynu, achos mae amser ychydig bach yn brin y bore yma. Felly, Angela Burns sy'n mynd i ddechrau.
So, with that much of a preface, we move on to item 2, which is the Autism (Wales) Bill. This is an evidence session with the National Autistic Society Cymru and Autistic Spectrum Connections Cymru. So, I would like to welcome Jane Harris, who is the director of external affairs and social change, National Autistic Society Cymru; Meleri Thomas, who is the external affairs manager for the National Autistic Society Wales; and Gareth Morgan, who is the project manager, Autism Spectrum Connections Cymru. Welcome to you all and thank you for your written evidence that you submitted beforehand. We have received quite a lot of evidence and we've been going through it as Members as part of this journey in dealing with the autism Bill. So, as usual, we'll go straight into questions, because time is a little tight this morning. So, Angela Burns will start.
Thank you, Chair. Good morning and thank you very much indeed for all your written evidence, which I found—you know, it was really informative. We're obviously here to try and discern where we are and whether or not we need to go forward with this piece of legislation. I'm quite aware of some of the public views expressed by the National Autistic Society. I don't believe that your organisation, Gareth, has particularly expressed a view publicly. So, I'd just like to ask all three of you what you feel about the legislation. Do you think that it is a positive step forward or do you think that it would not be an appropriate way of moving this whole agenda?
I think, for us, it feels like we're at a situation in Wales where autistic people and family members are having such distressing experiences on a daily basis—and that's from diagnosis rates to trying to get post-diagnosis support, to trying to get employment, to professionals just not understanding them within health and social care, education, employment. To us, it would be a really positive step to see this Act. We've obviously had experience of working on the Northern Ireland Act and also on the English Act. It is true that no Act, no legislation, is ever a panacea for all ills, but it feels like this would be a significant step forward. It doesn't feel to us that we are seeing the progress that we need to see for the 34,000 autistic people in Wales.
We've seen that, in 2008, Wales was really ahead of the game in producing an action plan. We're now at a point where, actually, unfortunately, according to our evidence, some areas are getting worse. So, diagnosis—more people are saying that they're waiting too long for diagnosis. More people are saying that they're not getting the support that they need after diagnosis. And we really need to see a push from Government. Obviously, we've been through these kinds of proceedings in talking about an English Act and a Northern Ireland Act, and we do understand the concerns that people have about it.
I think, ultimately, what has happened in other debates is that people have realised that we're just not getting the progress needed and that there does need to be a push from Government. That's certainly what happened in England. Andy Burnham, originally, when he was Secretary of State, thought, 'Actually, we don't need an Act.' Then he saw what was happening in his constituents' lives and he thought, 'Well, there is no alternative now.' I think that what we really want to see is—. When people say, 'Do we really need an Act?', I think the question for us is, 'What is the alternative?' Because we've tried various other things in Wales and we're just not seeing the progress we need.
I'd like to pick up on something there, but could I just ask what the view of Autism Spectrum Connections is?
I feel that—. Going back to 2008, Wales brought about a strategy that was led by the voluntary sector, which was—it was very much ahead of the curve. If we look across the United Kingdom, there is clearly no broad consensus on whether legislation or strategy is the correct way to move forward. But, if we focus our attention purely upon Wales, our perception—and that perception is led, really, by the people who use our services, the 800 people with Asperger's syndrome who are using our services in the south Wales area—. The strategy as it stands at the moment is not meeting the needs of people with autism and their families. So, therefore, I feel what is the alternative? Do we continue down the route of the strategy? As an organisation, we have grave concerns about the way that that strategy has been managed and some of the money that has gone into the strategy and where that money is going. So, I can only conclude that going down the route of legislation is the correct way to enshrine the rights of people with autism in Wales.
Could you—? Perhaps just sort of going back to—and you've touched on it as well—just your views on—. For us, we need to just seek clarity about whether—if we make it legal, and therefore it's on a statutory basis, do you think that that will actually have a significant enough effect on the outcomes that we have here?
I think it probably will. I think it's probably worth noting that the Welsh Government—when it published its first action plan in 2008, it was quite ambitious. I think we need to applaud that and to note that. But I think, 10 years down the line, we're still looking at the same issues. So, we're still talking about data collection. We're still talking about the length of time it takes to get a diagnosis. We're still talking about training. I think there's a question about that we can't go around doing the same things and expecting different results. If we don't legislate in this area at this point in time, then we have to seriously consider what that means and the consequences for the 34,000 autistic people—
So, what would be your commentary, then, back to someone like the Children's Commissioner for Wales, who has actually sort of been more than lukewarm about this, and who says that she doesn't believe that it would be a suitable way forward?
I think that what the children's commissioner was saying, if I'm right, is that she has some objections to the current legislation. But I think what she said was that, if it was passed, she would have some recommendations. I think we'd agree with that issue. I see this scrutiny as very much the starting point in this Bill. We've passed lots of legislation within the Senedd. They start off as one thing and they end up as something very different. What I want to make sure is that any legislation that is passed is as strong and then effective as it can be.
And there's an issue here in that one of the major reasons for rejecting legislation, from the point of view of Welsh Government, has been the enactment of the Social Services and Well-being (Wales) Act 2014. Now, from a coalface perspective, we are still seeing hundreds upon hundreds of people with autism who are unable to access assessment through social services. Anecdotally, I'm receiving feedback from people working within the integrated autism services that the assessment tools themselves actually are biased against people with autism and have a direct impact upon the ability of people to receive adequate care and support moving forward. And I think that looking at enshrining something that is autism specific and making sure that we are all held to account in the way that we work with people with autism, in the services that we provide for people with autism—I think that is the only logical way forward now.
Can I just pick you up on just one more comment? Because that's quite a strong comment, isn't it, 'biased against'? Could you just expand on that a little?
I have got some information on that in the written evidence that we've submitted.
I think that what we're seeing is that—. So, again, on an anecdotal level, we have a number of people who come to us for support. We are aware that they would benefit from some kind of domiciliary support—so, helping people to live independently within their own homes, within the community. When we then try to help that person to access an assessment through social services, they will go through a gatekeeper. The gatekeeper will—. Essentially, if that person can get up in the morning and they can wash themselves, they will not get through to an assessment.
And that is not taking into account the many challenges that people with autism have on a day-to-day basis.
Thank you. Actually, I do have one last quick one. It's a really quick numbers one. Thirty-four thousand you said, Meleri. Roughly, just so we get a picture, how many of those would be under 25 and then how many are deemed adult?
I think it would probably be about a sixth, roughly.
I don't think we've got specific data. I don't think that specific data is available. We could always dig around and see if we could get that information to the committee if that would help.
No, no, I was just—. Because I was trying to think of the pressures on schools and all the other things as well. That's why I was trying to—
But, to be honest, that is one of the things holding back autism policy, that there isn't that level of data. That's one of the things that the Bill would try to do—to try to make sure that there is the right level of data, so you don't have underprovision, but you also don't have overprovision.
We'll be drilling down to details now. Thank you, Angela, for opening up. And it's Rhianon next.
Thank you very much, and welcome also. In regard to some quite strong statements that have come through, not just from the Welsh Government position around this in terms of resource-intense activity around the legislation, the capacity issue—. We've also got statements from, for instance, the royal colleges, the NHS Confederation, who are concerned that the impact of the current initiatives, which are still in those very early stages of development and haven't embedded and are being rolled out across Wales—. So, there is concern, not just from those, but also from the Community of Practice for Adult Diagnosis and Integrated Autism Service Practitioners and the Royal College of Psychiatrists—and the list goes on—in terms of the efficacy of being able to wait, bearing in mind the context and the landscape, which you absolutely accurately have already described, in the fact that there's a need for improvement and the improvement of outcomes, and you've also mentioned the data. So, how would you, from your perspective—you're at the coalface as well—? How would you counter those very strong statements? And, obviously, the children's commissioner as well—.
For me, there's something about the legislation actually strengthening those initiatives. Because, actually, the point is that it will put those things on a statutory footing. One of the most important provisions, I think, in the draft Bill is the idea that there'll be an independent review of current delivery. And, actually, that means that then you guarantee that there will be flex in the system because there will be regular reviews to say what is actually happening, and then you can flex your response to that. So, I think it's about strengthening that. I can't see how it undermines it. But also, I do think it's important to look at the experience in England, the experience in Northern Ireland. Some of the concerns that have been expressed—things like what the overdiagnosis of autism would result in—we just haven't seen that. To be honest, I think if anybody were aware of evidence that would show that that has happened in other countries, the NHS Confederation, surely, would be in an amazing position to be able to cite that evidence, but we're just not seeing it. So, I think it's really important to be pragmatic and say, 'Actually, what has the effect been in other countries?'
One of the other key lessons, I would say, is to look at—. What we're really seeing, particularly in England, is that wherever there was a really tangible and specific duty, you are seeing a tangible and specific outcome. So, for example, before the Autism Act 2009 in England—let me get this the right way around—only 14 areas of the country had an adult diagnostic pathway. We're now in a position, fewer than 10 years on, where only three don't. I mean, that is absolutely a complete reversal of the situation. So, I guess my challenge back would be: where is the evidence that legislation has led to the outcomes that people are concerned about, because we're not aware of it? Secondly, what is the alternative that's going to get that kind of level of change? You know, from three to 14—it's a huge difference.
Okay. I accept that is the position, and in terms of England as well. In terms of the things that are being embedded, around the updated strategy from 2018, the new code of practice and everything that that entails, the new guidance for housing provision—and we've mentioned data previously—there seems to be a whole plethora of bodies and clinical groups that are saying, 'Pause'. There is, in that sausage machine, a lot coming through, and therefore I'll repeat that question, perhaps, to Meleri and Gareth. Is it not wrong-headed, until those things are embedded and rolled out across Wales, to avoid that scarcity of resource being diluted?
I can understand your point and your concerns. My point would be: who is leading these new initiatives? What is the decision-making process behind those new initiatives? And where is the accountability for the people who are making those decisions? We have seen, over the last few years now, a lot of promotional materials coming out from Welsh Government around the development of services like the integrated autism service and the £13 million of public money that is attached to that. Now, that decision-making process, in terms of developing an integrated autism services, was developed—and this comes out through Duncan Holtom's report—it was very much a top-down process. It was led by one individual who worked within the Welsh Local Government Association.
We are unaware of how the Welsh Local Government Association has been held to account over the way that that has been developed. We are aware that there are major disconnects between what Welsh Government says the integrated autism service will do, and what it does on the ground. We have very good relationships with the integrated autism services across south Wales. There are some very, very talented and skilled and dedicated members of staff who are working within those, but the job that they are being asked to do on the ground is different from what Welsh Government are saying they are doing. It is different from what they are capable of doing from the money that is provided to them.
The development of the strategy and the way that that has been managed now, there is a—. Sorry, Meleri, what's the name of the group—the group that Julie Annetts chairs?
The implementation group.
The implementation group. Now, supposedly, this would be the body that would hold to account, would advise and assist Welsh Government in the development of policy. Now, the vast majority of the organisations who sit on that are funded by Welsh Government, and I'm aware anecdotally of—
But, with respect, through the Chair, that is a different matter. That is in terms of quality assurance, and in regard to timing, my point, really, my question, really, the bigger point—and I'm not discounting that—is about timing. As we move forward—I'll repeat the question—is it not wiser for us to just see and evaluate what the embedding initiatives are going to give us as outcomes, because that's what we all want, isn't it? It would be better.
I know, and I appreciate that, but, sorry, just go back, what we have to look at is actually whether the decisions—is this work, which is ongoing now, which you're talking about giving time to embed, actually being done in the best interests of people with autism? Is that being done from a position of strength where people have truly been consulted with and there is an understanding of the needs of people with autism? I don't believe that there is.
Okay. The WLGA are coming here next week and they'll face this sort of questioning, all right?
I think what I would want to see from this Bill and from any legislation is that the graph of outcomes goes like that, whereas, I think, what we've seen over the past 10 years is several initiatives but there hasn't been that ongoing progress, and I don't think, actually, it's fair to ask autistic people to wait any longer. They've waited 10 years as it is. I think that if you were to chart what happens, you'd start off in 2008 up here somewhere, with a lot of money and a lot of impetus and a lot of goodwill for the strategic action plan, and then you'd see it dip a little bit until there was the refresh, where there was some more money. So, you'd see the graph do this, and what I want to see is some positive, strong outcomes for autistic people. So, I think that's why we need this legislation.
Thank you very much, Chair. It's the same theme, really, but last week the Cabinet Secretary made a statement publishing the updated autistic spectrum disorder strategy delivery plan with some important new commitments. So, what are your views on those commitments?
On the new commitments specifically? So, one of the—. I listened very carefully to what the Cabinet Secretary said when he was talking about the new developments and about the code specifically. Shall I talk about the code now? I don't know whether it's coming up later on.
Will we look at it in a little more detail later on, or should we do it now?
Well, a little bit of detail now and you can have a little bit of detail later on. [Laughter.]
I'll give you a little bit of detail for now then. [Laughter.] So, I'd welcome a code. I think it's important to note that we've waited quite a long time to see what a code would look like. Rebecca Evans first mentioned it in the summer of 2017—we're now in the autumn of 2018. So, there's been quite a lengthy period of time, during which, of course, the Bill has been developing, and I know that there's been wide consultation with the public on what a Bill should look like, and I think that the public opinion is in favour of legislation in this area rather than a code. I'm not sure how far a code would go, whether it would include things like employment or housing. My fear is that a code would be quite limited in scope to what is just within the social services remit, because I believe that he's intending to publish it under that. So, I'm concerned that it doesn't go quite far enough.
So, obviously, in terms of the details of the code, you're obviously not aware of those yet, but you're saying that you think legislation is more of an answer than a code.
I think so. I mean, we've almost got a dual process going on here. I don't know whether this committee, as part of its evidence, is looking at what that draft code would do and how it compares to the draft Bill. I think that might be a helpful exercise for the committee to do so that it knows what it's comparing. That might be useful as the scrutiny process—
Thank you. And then the Cabinet Secretary did state last week that there won't be any more money, which I'm sure you heard, and it would result in the existing resources being, obviously, spread more thinly on existing resources. So, have you got any views on this?
Well, I think there's really good evidence on cost-effectiveness here. So, the National Audit Office, in 2009, did a study that showed that, basically, if you could identify and support 14 per cent of the autistic population, you would save £5,000 for every 1,000 of the general population. So, in Wales, that would equate to a saving of about £10 million. So, to us, there's a question of: can you afford not to do this, actually? We have all kinds of examples of people who we're in touch with who end up sometimes in really, really expensive health settings, sometimes hundreds of miles from home, sometimes not in Wales, in expensive out-of-area treatments because they haven't got treatment early. And of course sometimes people say, 'Well, that's an invest-to-save argument and you have to find the money in-year', but actually often those costs are in-year. I can think of somebody who was in one of those units about year ago and is now back living near her family in a much, much cheaper social care setting with much, much better outcomes for her. She was having daily incidents in the mental health unit in England. When she's living at home, she's not in that situation. You can count the incidents she's having in a year on your hand. And actually that is a saving in-year. So, my challenge back would be: actually, there's a massive saving to be made here, if you just put the right services in upfront.
Again, one of the issues is that we just don't have the data. We are in this kind of circular position that, because we don't have the data, we can't actually show that, but certainly we come across people almost daily through our branch network, for example, where people are ending up in situations that are bad for them, bad for their families and bad for the public purse. And, actually, we need to reverse that. It's just in everyone's interests to do that.
I think I'd just add to that—I recognise what you said about no extra money, which goes back to the point about effective spending of what is currently in the system, and I don't think that we've got data on current spend, but also we don't know how much a code would cost either. As far as I'm aware, there aren't any costings to that code. I think the Bill is quite clear upfront in the memorandum how much it would cost, so it would be interesting to know what the cost of the new code would be as well.
Thank you. Moving on to training, the provisions in the Bill are quite vague about training, really. They talk about making provisions for the identification of key professionals and provision of appropriate training. Nothing is mandatory. Are you satisfied that the Bill is going to deliver the kind of improvements in that area that you want to see?
I think if you look at section 2(1)(q), where it does talk about the identification of key professionals—I think that part of the Bill is to be welcomed. Training for teachers, for example, would be key and would be at the forefront of my mind. I think that, if there's one thing that we would like further discussion about, it's why that term 'but not mandatory' is in the draft Bill as it's currently written, because I think that we would like to see mandatory training for key professionals to ensure that they have that understanding so they can provide the necessary support and services for people.
Okay, thank you. The Bill mentions access to employment as part of a list of issues. Is that sufficient, do you think, to address the challenges in this area?
I guess it's clear in that list that there's—. I think what it shows is that autism isn't just something to do with social services or health—it's wider—and that we know that, when it comes to employment in particular, autistic people find it very, very difficult to get employment. So, that would probably be something to be welcomed by the autistic community.
Yes. I think that, in both those areas, the legislation could be stronger and more explicit. I think that that is a concern that we have moving forward. Sorry, if I may, just going back to Julie Morgan's point about money and there not being any more money available, I think that there does need to be some investigation into the effectiveness of the money that is already available for autism. There is supposedly £13 million that has been made available for the integrated autism services. Where is that money going? What are the management charges that are being charged by organisations like the Welsh Local Government Association? And is that delivering best value for the public purse?
Those are questions that, possibly, the WLGA will be facing next week. Lynne.
Thank you. NAS previously has called for specific duties on the face of the Bill. One example is a section to ensure that autistic people are not denied access to services based on their IQ. You said that including it in the strategy, you weren't convinced that was the most legally binding way to ensure it was implemented. Have you changed your mind on this, or are there things that you'd like to see on the face of the Bill that aren't at the moment?
I think there is. I'm trying to find it. Yes, here we go, section 2(1)(f) talks about the strategy must make provision:
'to ensure that persons are not denied access to services on the grounds of IQ'.
So, I'm happy that that's contained in the Bill.
But it's there, so, as far as my understanding of what the Bill says, the Bill says that there must be an autism strategy, and these are the things that must be in that strategy, which includes that you cannot deny access on the grounds of IQ. So, I'm happy with how it's written in that.
Can I just go back to the previous bit about employment and what the refreshed code says about employment and whether any of those targets that are currently in the action plan have been met? I think it talks about making Welsh Government autism friendly. So, I'd be really interested to know where we are with that, because there weren't any further outcomes when it was updated the other day. It would be interesting to know where we are with that in terms of where Government are.
Just moving on, then, to waiting times. We know that some health board areas are nowhere near to meeting the 26-week target to assess people. Based on that, do you think it is realistic to expect us to meet a 13-week target, as specified in the Bill?
Well, that's—. Sorry.
Can I just be very specific about this? Because, as I understand it, what the Bill says, in section 2(1)(c) is that the autism strategy must
'provide for diagnostic assessments and any post-diagnostic meetings to be commenced as soon as reasonably practicable following a referral and at least within any timescales set out in the relevant Quality Standard issued by the National Institute for Health and Care Excellence'.
So, what that quality standard is saying, if I'm right, is that nobody should wait more than 13 weeks from a referral to that first assessment. I don't think the Bill is saying that nobody should wait 13 weeks from a referral to a diagnosis; it's just that first stage. Because we know that the diagnosis needs multi people involved in it—multi-agencies—and I don't think it's right to put a time frame on that second bit.
But on that first bit, yes, I think that—. Clinicians that I've spoken to are in agreement that you shouldn't have to wait more than 13 weeks from a referral to that first assessment when nothing actually happens; you're just in limbo. So, I think that 13 weeks—. And I think it's important to remember that NICE are the clinicians, they're the experts in this, and if they've said 13 weeks, then there's obviously some good intelligence and evidence that they've based that timing on.
Okay. Well, linked to that, we know that the NHS is very target driven, so do you recognise the concerns that have been expressed that by having a particular target—whether it's to diagnosis or assessment—the clinicians will just work to that and other services could then lose out? And also, that there might be a risk of young people with other neurodevelopmental problems being de-prioritised as a result of this.
Just to come back on 13 weeks, I think another important thing to realise is that the NICE recommendation is also based on looking at cost-effectiveness. So, you know, NICE looks at all kinds of things about quality-adjusted life years to try and work out, actually, what their recommendation should be. So, I just wanted to make the point that there is a cost element to that as well because, obviously, the sooner you diagnose, the sooner you're going to give somebody the right support, or you're more likely to give that.
I think the key thing is that to learn about autism you actually do have to learn about some other co-occurring conditions, because, actually, to be able to diagnose autism, you need to be able to say, 'Well, this is autism, it's not ADHD', or, 'This is autism and ADHD.' So, actually, I think, while this is a Bill about autism, and we are obviously from the National Autistic Society, and it's that group of people, that 34,000 people, whose interests we are here to represent, I think it's really important to recognise that, actually, the Bill could have a positive impact on people with those co-occurring conditions, just because, actually, the level of understanding in the system could be greater. And, actually, lots of autistic people also have co-occurring conditions. Seventy per cent of autistic children have a mental health condition alongside autism, and the diagnostic services that we run at the National Autistic Society, for example, often do diagnose other conditions at the same time as doing the autism assessment, because often, to be able to diagnose autism, you also need to recognise what those co-occurring conditions are. So, I think, in clinical guidance, these things might be separated out into different volumes, but in practice, actually, clinicians do take a more holistic view.
Yes. You've answered, in large part, the questions I was going to ask, actually, about the focus on ASD diagnosis. A number of professional organisations that have presented evidence to us and the Welsh NHS Confederation, actually, have raised their concern that this is too narrowly focused on diagnosis, and that we need to have a wider approach. The current strategy actually has a much wider approach to the whole spectrum of autism. So, perhaps I could just have more views from you on that and whether it could potentially be seen, if we do focus so narrowly just on an ASD diagnosis that, actually, it could be a step back, not a step forward.
To be honest, I'm quite surprised by that interpretation, because I think part of the strength of the Bill is that it looks across the piece, so it does mention things like housing, like employment, like education. And that is one of our concerns about a code—that it would be very specifically related to the social services and well-being Act, so therefore, it would, by definition, be restricted to health and social care, when autistic people's lives are affected by many other domains. So, I don't really see that in the draft Bill, as it stands.
I think, though, we have to recognise that diagnosis is the first stepping stone for most people to be able to get support. That's not just support from statutory services; it's also informational support. If you're a parent of a child and you know that there's something going on, you know it, you can't quite understand what support it is that they need, that diagnosis can mean that, finally, for a start, you know which websites to look at. You know that you're going to look at our website and our resources rather than at something about ADHD. You can start to think, actually, what this child needs is structure, rather than this child, for example, having an anxiety diagnosis that means that they just need a completely different set of support. So, it's not that you get a diagnosis and then everything is plain sailing. I mean, too often, that is a terrible disappointment to many people—that they wait years and years for a diagnosis and think, 'Finally, everything's going to be all right', and then they find out, 'No, actually, now I've got to go on a waiting list for XYZ to be able to get that support', but it is the first step.
I also think the other key thing about diagnosis is that if we know how many people are diagnosed, that allows then for the planning of services. So, if we don't have that data about how many people are diagnosed and therefore possibly in need of support, it's much, much more difficult for anybody, whether they're local health boards, whether they're local authorities, whether they're employment services, to think, 'Well, actually, this is the level of provision that we're now going to need to be able to support that population', because until we have those numbers and we have diagnoses sorted out, how can you plan for the future?
I think the Bill is quite clear that it must meet the needs of autistic people. If you look at section 2(1)(c) again, it says, while you're waiting for a diagnosis or the assessment,
'this shall not prevent the provision of any other services prior to the commencement of a diagnostic assessment'.
And, further, section 2(1)(k) says,
'place an emphasis on how families and carers of persons with autism spectrum disorder can be supported in meeting the needs of those persons'.
So, I think it looks at it in the wider section of it, not just focusing on an individual's diagnosis, but rather the needs of the individual and their families and carers.
Just to add to that, yes, diagnosis isn't the be-all and end-all, but on some occasions, you have to have a diagnosis to be able to get support. For example, blue badges. You have to be able to show that you've had a diagnosis to be able to get a blue badge. And a blue badge is quite a low-level intervention, but it has a massive impact on the lives and safety of autistic children. So, I think there's a balancing act here between what doors a diagnosis opens, but also to supporting the needs. And I think the Bill is quite clear about that.
I think this does get to the heart of my concerns about it, really. If you look at child and adolescent mental health services, we don't know anything about what happens to children once they've had that assessment. We don't know what the quality is, whether they get better, or anything like that. Don't you see that there is a risk, really, by front-loading things on diagnosis, that the same could happen to autistic children under this Bill?
I think, though, that's also where the independent review comes in: if there are unintended consequences like that of the legislation, then actually the fact that there's an independent review built into it means that you would pick that up, and therefore you would have a Government response to that.
Well, you're more likely to if it's on a statutory basis.
Just to pick up further around that, I think there is concern out there from clinical groups, as has already been mentioned, that it's the whole neurological aspect for other conditions, in terms of front-loading it around an autistic Bill. That's not to state that those issues are not all very prevalent at the moment, but what would be your counter to the fact that there could be, for instance, ADHD or other groups that will say, 'We need a Bill in our direction as well'? Would this not be the first stepping stone to a non-level playing field?
I think absolutely the opposite. In fact, I think it's probably giving autism a level playing field, as it's fallen behind other provision and other support. I don't know whether this is true in England, but in Wales, while we've been campaigning and talking to people about this legislation, we haven't heard anybody else saying, 'Oh, well, we need a Bill on other conditions.' It just hasn't happened. It hasn't been our experience that that is what's been said in public. I don't know whether that's the same in England.
It hasn't happened in England, either.
I would agree with that, and I think that for too long, really, we've seen autism being—. We work specifically with adults, and my background is very much within adults, but we do see people with autism just being categorised into learning disabilities and mental health. People with autism are severely disadvantaged by current arrangements, and the strategy really was there, the original strategy was there, to try and level that playing field. But the effectiveness of it hasn't closed that gap.
I think that's the point, that the current structures mean that autism is actually at a disadvantage, so you need something to make that a level playing field again. I think the committee in the last session was talking about the waiting times in Pembrokeshire, for example. I'm not aware of other conditions in that same area where some people are waiting seven years for a diagnosis. If there is another condition that is in the same situation as autism, maybe there is a case for that, but at the moment I haven't heard an argument to say that is the case.
Okay. The final lot of questions from Angela, who's going international.
We've discussed it, and in part you have answered it. Our job here is to try to really test the evidence for the Bill, so I guess we want to try to get to the bottom of what's really happened. The Scots decided not to pass the Bill, the Northern Irish passed it, but it seems to have gone into some kind of limbo-limbo land. England passed the Bill but they haven't yet produced any conclusive, 'Wahey, it's made an enormous difference'. So I just wondered if you could really come back with evidence that you've seen elsewhere of legislation along this line, and the impacts, the positive or negative impacts, that it's had in those countries.
I think Northern Ireland is a specific case and obviously there are all kinds of issues there about power sharing collapsing that are probably—I mean, that's not going to happen in Wales, so I think we can probably almost put that to one side.
I think the lesson for me from the English Act—and there is going to be a review next year, because it's going to be 10 years since the Act—is that the more tangible and specific the duties, the more tangible and specific the outcomes. So, there definitely has been a general impact of the Act. It has created greater awareness, professionals who are doing great work on the ground have told us that it's easier, sometimes, for them to get the ear of decision makers, for example in local authorities, because actually the Act has put autism on the agenda. So that's the general effect.
But, where there have been tangible and specific duties, there have been tangible and specific outcomes. So, for example, in England now, the waiting time for diagnosis for adults is less than for children, and I think there is an absolute correlation there to the fact that the Autism Act is focused on adults. Before the Autism Act, all the evidence was that it was harder to get a diagnosis as an adult than it was as a child. So, as I said before, only 14 areas, before the Autism Act in England, had an adult diagnostic pathway. The fact that that has been absolutely reversed and that the vast majority of areas now have a pathway is a really, really clear effect. Does that mean that every single problem that autistic people have faced in England is solved? No, but it does mean that there is a tangible shift.
The other area where you can see a really clear shift is in autism leads. I think that 93 per cent of areas in England now have an autism lead; before the Act, it was 39 per cent. So, again, you're going from the minority of areas having something in place to the majority of areas. Obviously, we want to get that to 100 per cent and, obviously, diagnosis times, it's always going to take a while to clear the backlog of those. It has had a really tangible effect, but I think the key lesson for me is that if there are areas where the committee feels that, actually, it's really important that we see those big shifts in 10 years in those areas, make sure those are on the face of the Bill because that is the way that change is being delivered in England.
I think it's important to note as well that what we're looking at here is a Wales-specific Bill. We're not taking the England Bill, which is for adults only, and we're not taking the Northern Ireland Bill and trying to wed those together. What we've done is learn from those two pieces of legislation in Northern Ireland and in England and create a specific Wales piece of legislation.
I think it's also worth noting that, when the strategy was first established in 2008, this place couldn't make laws, and I think if we were in 2008 or 2007 trying to come up with a specific autism—. We would have been campaigning for a law at that point. So, I think it's important to remember that England and Scotland and us are at different starting points. We had a strategy that we're now trying to put into law, but previously there wasn't anything—there wasn't a strategy or anything in England or Scotland.
I think we need to look inwards a little bit, rather than looking at the effectiveness of legislation or strategies in other countries. I think we need to be really reviewing how effective the strategy has been in Wales, what those existing gaps are and those continuing gaps, and they are going to be there in the future, and how we can meet that. Like I said at the start, I believe that legislation is probably the most effective way of plugging that over the coming years.
It was just on that point, and I take absolutely on board the views that we're trying to develop something Wales-specific, but I think it would be unrealistic for you to be asking legislatures not to look at where legislation in similar areas has been before and learn the lessons from them and try to develop. But what I'm struggling with—. I'm not specifically opposed to legislation and, I'm not necessarily in favour—I'm here to be persuaded that this is the right thing to do. But moving to develop a piece of legislation is a huge step, so I've got to be convinced that, if we're going to do this, we're not going to fall into the similar sorts of situations that we've found in other countries. And the thing I'm struggling with is that even though the proposals for the Bill in Wales are different, and they are adults and children and not just adults only, the evidence that we've had presented to us from the National Autism Project is that, nearly a decade on from the English Bill, the needs of autistic people are still unmet and the unexpected economic dividend has never materialised. It says it's probably been useful in getting autism up the agenda, but many people with autism and their families have not seen the changes needed. Now, if we're going to introduce legislation, I don't want us sat here in 10 years' time saying that. I can't see how that tells me that the Autism Act in England has been a success.
So, I think the situation is a little bit more nuanced than that. I think the point is that, where the Autism Act in England put in those specific duties on adult diagnosis and on autism leads, there is a tangible shift. So, I'm saying that, in those areas, you are seeing practice go—. You are moving from good practice in the minority of local authority areas to the majority, and if that's not a significant shift, honestly I don't really know what is. But I think the key lesson to learn from the Autism Act in England is that it was very narrow in its scope, so the fact that it was just adults meant that that impact on diagnosis rates has been on adult diagnosis—it hasn't been on children—and it didn't cover some areas that the draft Bill in Wales is trying to cover. So, things like an awareness campaign, for example, have never been in English legislation, and things like some of the duties on housing and employment have never been in English legislation.
There have been debates in England as well about criminal justice and whether there should actually be more activity in that area. So, I think—the key thing for me is that, if you put in those absolutely specific duties, you can see in England that amazing shift. As somebody who's worked in public policy for almost two decades, to go from the minority of areas to the majority of areas doing something, that's about as good as you can hope for in five to 10 years—that's a really significant shift. But the issue is the scope, and so that's partly why I think the draft Bill is to be welcomed, because it seems to have learnt the lesson that the scope needs to be wider. Because there aren't just autistic adults; there are autistic children, and autistic people need adjustments in education, in employment, in housing, not just in health and social care. So, I think that's where, actually, the legislation has absolutely learnt those lessons and therefore has greater potential for change than what is in place in England.
I think also that we know that local authorities and health boards are facing challenging financial climates, which means that, if you only have a strategy, and you have legislation in other places, then your focus is going to be on the things that you have to do and not on the things that are nice to have. And I don't think that an autism strategy should go to the bottom of the pile when you have an opportunity here now to legislate and to say, 'Right, yes, local authorities and health boards must do, must comply with legislation'.
And I think that's partly my concern—what happens to those conditions that don't have a legislative duty and obligation? And I think that that's something that I've not yet been able to completely reconcile.
I think that there has been—. You know, I'm not English, I'm not at the coalface, as I said earlier, in England. I think there has been mixed reaction, reception to the Autism Act in England. But I concur with what Jane is saying—it's a narrow piece of legislation. It was a narrow piece of legislation that initially wasn't particularly backed, hence why they had to bring in a strategy to support that. Again, I think we need to be focusing upon Wales. And I do understand what you said—what lessons can we learn from elsewhere? I think that the legislation, as it stands, could do with some strengthening and some improvement. However, we have had a strategy in Wales now for over 10 years and it's not meeting the needs of people. What are we going to do moving forward? How are we going to enshrine those rights and ensure that people—families, children, adults—are receiving the correct support? What are we going to do for them? The strategy as it stands at the moment isn't cutting it; it's not meeting those needs. So, I think it is logical that we look at legislation, we look at building something that is strong and gives people a better chance of succeeding within society than they have currently.
I think it's about leadership as well. You know, 2008, Welsh Government showed leadership in being the first part of the UK to have an autism action plan. I think it's time again now to show leadership again and to legislate in this area.
We've had lots of talk of leadership over the last few weeks. [Laughter.] I think that's a timely area to stop, because the questioning has come to an end. Thank you very much.
Diolch yn fawr iawn i chi i gyd, a hefyd diolch yn fawr iawn i chi am eich tystiolaeth ysgrifenedig ymlaen llaw. Hefyd, i gadarnhau, byddwch chi'n derbyn trawsgrifiad ffurfiol o'r trafodaethau yma i allu cadarnhau eu bod nhw'n ffeithiol gywir. Ond gyda hynny, diolch yn fawr iawn i chi am eich presenoldeb.
Gallaf gyhoeddi i'm cyd-Aelodau y cawn ni doriad o bum munud rŵan er mwyn i'r tyst nesaf ddod i mewn. Diolch yn fawr.
Thank you very much to you all, and I also thank you for your written evidence submitted beforehand. Just to confirm, you will receive a transcript of these discussions to ensure that they are factually accurate. But with that much of a summary, I thank you for your attendance.
We will have a five-minute break now, before the next witness comes in. Thank you.
Gohiriwyd y cyfarfod rhwng 10:29 a 10:35.
The meeting adjourned between 10:29 and 10:35.
Croeso yn ôl, bawb, i sesiwn ddiweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 3 rŵan, ac mae trafodaeth ar Fil Awtistiaeth (Cymru) yn parhau. Nesaf y mae'r sesiwn dystiolaeth gyda Dr Duncan Holtom. Rydym ni wedi derbyn tystiolaeth ysgrifenedig ymlaen llaw. Mae’n bleser croesawu Dr Duncan Holtom yma, sef pennaeth ymchwil Pobl a Gwaith. Mi fyddwch chi’n ymwybodol bod y Cynulliad yn rhedeg yn ddwyieithog a hefyd fod y meicroffonau yn gweithio’n awtomatig—nid oes eisiau cyffwrdd â nhw, felly. Wedyn, fel sy’n draddodiadol yn y pwyllgor yma, rydym ni’n mynd yn syth i mewn i gwestiynau, ac mae gyda ni ryw dri chwarter awr. So, Julie Morgan sy’n mynd i ddechrau.
Welcome back, everyone, to the latest session of the Health, Social Care and Sport Committee here in the National Assembly for Wales. We've now reached item 3, which is a continuation of the discussion of the Autism (Wales) Bill. The next evidence session is with Dr Duncan Holtom. We have received written evidence beforehand. It's a pleasure to welcome Dr Duncan Holtom, who is the head of research at People and Work. You will be aware that the Assembly operates bilingually and also that the microphones work automatically and so you don't need to touch them. Therefore, as is usual in this committee, we will go straight into questions. We have around three quarters of an hour. So, Julie Morgan will start.
Thank you very much, and good morning. Could you start off by summarising some of the key findings from your evaluation work on the autism action plans and the integrated autism service, including your latest interim report, and any remarks you are able to share on the final evaluation report, which I understand is due to be published in January 2019?
Yes. So, just to be clear, in relation to the final evaluation report, I've been advised that we should not and we cannot talk about it yet, because it's not been submitted to the Welsh Government. So, I'll restrict my comments to the interim evaluation of the refreshed strategy and the integrated autism service and also our previous evaluation of the last autism strategy, if that's okay.
In terms of a summary of findings, thinking about what the Bill sets out to achieve, I think both evaluations identify that there are clearly unmet needs at the moment in relation to children and young people with autism, adults with autism, and parents and carers. And I think that's very clear from both studies. They also provide some evidence that having a strategy has made a difference and has raised the profile of autism within Wales and got it more on the agenda. It also identifies—certainly the evaluation of the first autism strategy really identified—that while a lot of progress was made in a number of areas, it was a very inconsistent picture. If you're looking, for example, at progress around assessment and diagnosis, important progress was made in some areas, but it certainly wasn't a consistent picture across Wales. You had islands of good practice and a significant issue about the fragility of services because it was so dependent upon the commitment of key individuals, and, if those individuals moved on, there was a real sense that services could simply fall away again. So, real issues around assessment and diagnosis.
In terms of support, there is, as I'm sure others have said, a significant gap in support for those people who are not eligible and it is not appropriate for learning disability or mental health services to support them, and also significant gaps around, for example, employment support.
There is also, I would say, a significant gap between the expectations of particularly parents and carers and, to some extent, adults with autism—so, parents and carers of children and young people with autism and, to a lesser extent, adults with autism—a gap between their expectations of what the services can provide and what the services are able to provide at the moment. I think there are a number of reasons for that. I think that, in some cases, it's simply that there is a lack of services—so, for example, services for adults who don't fit with either mental health or learning disability services. There's a clear gap there. There are also sometimes weaknesses and mistakes in the way services are provided and the way needs are met, but there are also often disagreements on how best to meet needs between professionals and parents and carers. I think, for example, the support needs of children is often a good example of that, with parents and carers believing that one-to-one support is a solution and professionals disagreeing with that for a number of reasons. That's not an easy thing to resolve, it's not an easy gap to resolve.
I think then if we look at the barriers in the integrated autism service, that aims to address a number of these issues but certainly not all the issues. It's important to recognise that the integrated autism service is only part of the solution, it cannot be the whole solution to meeting those needs. At the time of writing, the first four services were just getting up and running, so it was too early for us to judge how effectively they were likely to meet those needs. But there was a lot of support from the stakeholders we spoke to for the idea of setting up an integrated autism service and a lot of hope that it would make a difference, but, at that stage, it was too early to tell how effective it would be in meeting needs, particularly for adults who don't fit with mental health and learning disability services.
Thank you. So, in view of all those findings, do you think this legislation is the best way to improve outcomes for people with autism spectrum disorder and address the core issues?
So, that's not a question that either evaluation has looked at, so it will be a personal view. I think if you look at the things that the Bill sets out to do, sets out to achieve, it is clear in most cases—and I'll come to the exception to that—there is a need for action in those areas. So, there are issues around assessment and diagnosis, as we touched upon: there are issues about the extent to which support needs are met, there are issues around training and so on, there are issues around access to information. I think the Bill may make a difference to some of those, but I'm personally not sure whether it's the right or the most effective way to meet those needs.
I would also have some concerns about the potential unintended impacts of the Bill if it, for example, distorts priorities. So, a greater focus is placed upon assessment and diagnosis, which is clearly very important, but if that then sucks resources away from post-diagnostic support—. I think that was one of the problems the first evaluation identified—that where, for example, assessment and diagnosis were up and running, there was often a lack of post-diagnostic support, and some people therefore questioned the value of getting a diagnosis without post-diagnostic support.
I think that then speaks to the issue around funding, that a lot of what the Bill sets out to achieve will not be cheap. That doesn't mean it shouldn't be done. It doesn't mean there's not a clear need to do it, but simply setting up a Bill without the funding behind it—I would have serious concerns with that. It will simply raise expectation that are then unmet.
Good morning. I just want to clarify one thing, because you've highlighted the importance of getting a diagnosis to adults with autism and to the parents and carers of children with autism, but you've also just said that you would be worried if an unintended consequence was it was putting the emphasis on the diagnosis. It seems to me you can't have it both ways. It's either really important to get that diagnosis, or actually it's not so important, so it doesn't matter about the waiting lists and stuff. Which is it?
I think it's a really good question. There are two parts to it. One is the diagnosis is important and it is important of itself, for both parents and carers of children and young people with autism, the children and young people themselves, and adults. It helps people make sense of their lives or their children's lives, for example, and it's clearly of value to people.
Particularly for children and young people, diagnosis is still very important in terms of being able to access services. It has an impact on, for example, educational provision, so there is still a sense that diagnosis is the key to accessing the services that you need. It's a more complex picture in relation to adults with autism, because there just simply aren't the services out there for adults with autism. So, getting a diagnosis doesn't suddenly open the door to services, in a way. To some extent, it does with children and young people. I think the concern around adults is, simply, if you get a diagnosis and that's it, there's no follow-on post-diagnostic support and counselling. That is an issue there. Then, there's the border issue about, well, what support should be in place to help adults around, for example, employment? I keep saying that employment is one of the key gaps at the moment.
I understand what you say, and my comment would be that, if we knew we had adults with autism, we could then look at putting the services, because it's such an unknown quantity really, isn't it?
Thank you, Chair. In regard to the current scale of progress and the portfolio of initiatives that are currently embedding, or are in the process of being rolled out across Wales—and you've touched upon the evaluation, or the interim evaluation—how do you measure the scale of progress to date, and the ambitious outcomes that we're all looking to achieve?
Thank you. Our interim report only focuses on the integrated autism service. It only focuses on the first four areas that have set it up. At that stage, it was too early to measure what impact it was having. So, all we could do was talk to people about their expectations and their concerns about the difference the service was having. As part of the continuing evaluation, we are, for example, talking to service users where we can—to interview them or invite them to answer and complete questionnaires about their experiences of the service. But, that won't be published until January.
So, what are the early indications? Obviously, we are in this duality of potential process. In terms of the likelihood of achieving similar or a parity of outcomes—either with this legislation or without it, with the current portfolio of measures that have been implemented, albeit with a scale of progress up to where we are at today—what is your opinion of the likelihood of achieving similar outcomes to if there were legislation in place? Or, do you think that's not the case, and do you have an alternative view?
So, if we focus on the integrated autism service, the ambitions of the Bill are greater than the integrated autism service, and I think it's important to recognise that. The integrated autism service is designed to fill a very specific gap in services, particularly for those who are currently not able to access mental health or learning disability services, and also to address the weaknesses around assessment and diagnosis. One of my concerns—and one of the concerns we raise in the interim report—is that you could end up with, effectively, a two- or three-tier service, where you get a very good service if you're assessed and diagnosed through the integrated autism service, but that, if you're assessed and diagnosed through existing mental health or learning disability services, you might not get the same quality of assessment and diagnosis and post-diagnostic support.
Potentially, I think it could give a broader focus around assessment and diagnosis across the board, and not simply around the integrated autism service.
So, could you touch upon that, in terms of the wider neurological debate that there is—that this is very specific and that it could, in itself, via the Bill mechanism, create a two- or three-tier system? I mean, it's not just a Government position. It's the position of community of practice for adult diagnosis, the royal colleges, the NHS Confederation, the Royal College of Psychiatrists—they have all expressed concerns that this is a very specific area that needs to be looked at, and to achieve better outcomes. Everybody is in agreement about that. It's just that route-map to achieving those better outcomes. What's your view?
I think there was a lot of support, as we made clear, for the model of the integrated autism service. At the time we were writing it, it was too early to tell whether it would work.
Is it wise, then, as keeps being repeated—? Would it be ethical—? That's the wrong word. Would it be useful, then, to wait for those outcomes to be evaluated before deciding on which route to travel?
I would suggest so, yes. It would make sense, given that you've already invested a lot of money, to see if this achieves the aims it sets out to achieve before you decide that additional legislation is required.
Okay. I'll move quickly on. So, you've obviously previously highlighted the assessment, diagnosis—the gaps in the provision of services, which are widely recognised, for people with autism spectrum disorder. So, what are your views on how well the provisions in the Bill would address these issues, compared to where we are now?
I think—. I'll just say from the outset that I would support almost all the aims of the Bill. I think the one concern I have is around data collection. I'll talk about that in a moment. I think raising the profile of autism, getting it up on the agenda, would be a good thing, and I presume the Bill would do that. Having clear and consistent pathways to diagnosis would be a good thing. Now, the integrated autism service and the work around Together for Children and Young People programme should provide that. I would suggest that it would make sense to wait and see if that works before you decide you need to legislate to do that.
The action for support—again, there is a clear gap. There are clear issues around the support that's currently available. The integrated autism service is part of the solution for that, but not the only part. I would suggest that employment support is a key area that the integrated autism service isn't really going to touch.
And we presume that that could also be developed as the Bill could be developed in moving forward, if that were to be the case.
And just finally—this has not, I don't think, been highlighted yet—in regard to the fact that there's been, in terms of approach, a child-centred approach, in particular, for those who are under the threshold for diagnosis, who are deemed vulnerable, within the Bill it isn't necessarily deemed clinically that it is a child-centred approach, and, in regard to best practice, that is where we are felt to be moving towards. Have you any comment around that, or—?
Sorry, could you elaborate a little bit more, just to make sure I've—? Sorry.
So, the Royal College of Paediatrics and Child Health are similarly concerned that the proposed legislation is not child-centred, because children presenting with a range of issues or symptoms that may be similar to or overlap with autism spectrum disorder, where it's not an appropriate diagnosis, may then be excluded from an appropriate pathway. So, we're talking more about thresholds.
I would not feel in a position to judge that particular issue, or to challenge the professional view. And my understanding is that Together for Children and Young People—. Obviously, there's separation of arrangements for assessment and diagnosis for children and young people and adults, and Together for Children and Young People is part of a broader neurodevelopmental pathway. Then there are debates about whether that broader neurodevelopmental pathway is broad enough, but I would not feel in a position to make a professional judgment on that.
It was just on what you said about Together for Children and Young People. You said that you think that we should wait until they've completed their work on the integrated autism service. I just wanted to ask whether you recognise, though, the fact that there are very big disparities in the way the service is being delivered across Wales. For instance, in Betsi, there are really long waiting lists—unacceptably long—whereas, in Gwent, things are improving. How do you reconcile that if there's going to be such a disparity of service?
It's undoubtedly a concern, unquestionably. And I think, as we highlighted in the evaluation of the last autism strategy, inconsistency is a real problem and, if it is not improving in line with the expectations or the programmes, then it makes sense to take other action, be it legislation or another route to improve that consistency.
I think, in relation to adults, one of the key things the integrated autism service tries to do is to provide that consistency across Wales. But the experience of trying to do that does also illustrate some of the problems and difficulties around that. It seems to make a lot of sense to have an all-Wales solution, but then you try and fit it in to the particular local contexts, which are different and so on, and they don't always fit very comfortably and neatly and, obviously, that causes a lot of the problems around the development of the integrated autism service. It's trying to, to some extent, impose a national model on different local conditions. So, there are, undoubtedly, challenges about how you get that consistency. But I absolutely recognise the point that really long waiting lists are a very big problem and a very real and legitimate and obvious concern for parents and carers and children and young people.
Thank you, Chair. Morning, Dr Holtom. The Cabinet Secretary last week, as you're probably aware, made a statement on publishing an updated autism spectrum disorder delivery plan, and he reflected in that that it would deliver important new commitments, which should improve services. And he's now going to consult on a new statutory code in November for people with ASD. Could you just give us your views on those new commitments and whether you believe that they could address any of the main aims of the Bill without the need for legislation?
I think elements of the code could help some of the issues around support needs and so on, but it is not an area we've evaluated as such, so there's a limit to how much—
Okay. The Cabinet Secretary also said that, in his view, the Bill—. Well, 'in his view'—I mean, he's the Cabinet Secretary, so he'll know that there won't be any more money—. There won't be any more money put into the system and it would result in existing resources being used less effectively. I think you've touched on that, but could you just expand a little bit more on your views around that?
Yes. So, I think the concern would be that it could distort the priorities. If you set clear targets in some areas—which obviously makes a lot of sense when you've got a concern around waiting times and so on—but those targets only relate to parts of the system and they relate to the parts of the system that are easy to measure, all the attention gets focused on those parts, and you potentially end up hitting the target but missing the point. So, all the resources get sucked into that area away from other areas of work. There's obviously not an easy solution, as we were saying. Very long waits to assessment and diagnosis are a real concern. I think the issue is there are lots of other concerns as well, and it's how you choose to prioritise, or which you choose to prioritise.
Okay. My final question, again, which you have touched on briefly, is around the integrated autism strategy and whether assessment and diagnosis could exceed the capacity in the new IAS. I mean, this is partly about funding, I guess, but whether it's likely to sideline or undermine other important aspects of the IAS's work—any views on that?
It was something that came out in the interim report. There was a concern about the level of demand. There was an uncertainty about how much unmet demand there was out there, and services were understandably concerned about whether they would be able to meet that demand in a timely fashion or not, and, if demand was much greater than expected, the knock-on impact that would have on their capacity to provide post-diagnostic support. So, essentially, I'd say that's a resourcing question.
It is, yes, and that's not going to be, particularly, any different, whether we develop the strategy or whether we have a Bill. If it's not resourced, it's not resourced, is it? Okay, thank you, Chair.
Yes, it's just a quick one, picking up on the point, because, of course, throughout the NHS, we have targets for waiting times in all sorts of things. The one that immediately comes to mind is cancer, and that's perfectly acceptable, but, as far as people with what could be deemed as mental health conditions are concerned, it's never above the parapet, it's not visible, and it's not sort of doable. Do you think that part of the problem is because of the complexity and scope of the autism diagnosis, from a very high functioning person with a very strong IQ being on the autistic spectrum but obviously having a need for support on a social level, all the way through to those who are perhaps on the exact opposite end, who struggle in every single way? Is that part of it? Whereas, if you do have a medical condition, it tends to be a single or with a couple of comorbidities that are very easy to touch, put in a box and deal with. Because there is so much resistance to this, I just wondered if it's because it's so difficult it's not wanting to be dealt with.
I honestly don't know. It could be. I've not heard people say that. The diagnosis process can be complex, but it's not always complex. The issue, though—people haven't tended to say it's the complexity of the assessment process; it's more the numbers of people coming forward and the limited number of clinicians who are able and confident enough to do diagnosis that is driving it. We touched upon, in fact, in our evaluation of the first strategy, that one of the—. I mean, it's a good outcome that increasing levels of awareness mean that more cases of autism are being picked up, but that, then, is increasing the pressure on assessment and diagnosis services.
I do take that point. I think this is my stumbling block. We all have different stumbling blocks about the legislation and what we should be doing. My stumbling block is that, because something is difficult, because it flags up a lack of resource, isn't a good reason to not to do it, because actually it's about rescuing people from bad situations and trying to give them a really constructive forward pathway. So, we could say, 'Well, let's get rid of all our autism diagnosis practices and then we won't have anyone to diagnose, so there's no problem.' But if we said that in any other fields we'd be pilloried. So, yes, I totally accept that there's—
Because there are no targets for any waiting list for kidney transplants either.
If I could just add, I guess there would be considerable concern if it was felt that targets for cancer were drawing resource away from treatment for cancer, so you ended up with a situation where diagnosis of cancer was really fast but then there was no treatment afterwards.
But we've filled that gap, haven't we? And that's what we're looking to do always is just fill, but you need to know what it is you've got to fill, don't you?
Right. Moving on, Lynne, you've got the next—although they've been partially answered.
Partially answered. And I'm in the same place, really, I think, as Angela. That's my big concern, really, that it'll distort things and that actually we'll have loads and loads of diagnosed kids who are still just as miserable and unhappy because they haven't got a service to match. How would you suggest then that this Bill could be changed to make sure that that doesn't happen?
'I don't know' would be the honest answer. I guess the obvious thing would be to put the funding behind it. Beyond that, I don't know. I understand from the professional community there are debates about what the appropriate waiting times would be and whether longer waiting times would reduce those pressures, but I'm not a clinician, I don't do it. So, I would suggest they're the best-placed people to make that sort of judgment.
Okay. And have you got anything further that you wanted to say about the impact on other neurological conditions? Because the committee has had some evidence that they could then be disadvantaged by having an autism-specific Bill.
Not a huge amount, no. It comes up from time to time, but, you know, we're focusing on autism. We're talking to people working in the autism sector rather than consulting people in other sectors, so—.
Very briefly. There was a comment made earlier by previous witnesses that the strategy and its refreshed machinations were done in isolation and not in co-construction with the sector, and that there was one person in Welsh local government that was concocting future strategies. How would you rebut or not those statements?
We, in the interim evaluation, didn't look—. We don't talk about the drafting of the strategy, but we do talk about the development of the integrated autism service, and I think we characterised the process as lacking transparency. There was undoubtedly a concern that the process through which the integrated autism service was developed was driven by a small number of people.
So, from your perspective, that can definitively be changed and improved, because obviously without that co-construction with those on the coalface then it is not going to be fit for purpose as best as it could be. So, there is an acknowledgement around that.
Yes. I think that's co-construction both with the professionals responsible for delivering it but also service users. I think the challenge that comes up—and I'm fully in favour and completely supportive of co-production—is that there is this chasm of expectations between what a lot of people want from a service and what professionals feel a service is able to provide, and that doesn't mean you shouldn't be talking to service users, but it does make that conversation quite difficult.
No, no. It should happen, but I don't think better co-production, better engagement, will necessarily make all these problems go away, certainly not swiftly. It's important to happen—it should happen—but you wouldn't expect it to be the panacea that resolves all these problems.
Financial implications. To be honest with you, I think we've touched on most of them. Just two quick questions: one of the previous witnesses referenced an audit report of 2010 that talked about the value of spending now and the—. Do you know—? Have you come across that?
Yes, I have.
Could you just expand on it—because she mentioned it really quickly, so I didn't have a chance to pick up on that—and does it hold water?
I haven't read it in depth—I had a quick look at it because I was interested in that issue as well. It's a National Audit Office report, so it's a good, solid sort. My understanding is that it looks at the cost implications of having a multidisciplinary team, which, effectively, we've got at the moment with an integrated autism service, plus specialist employment support, which we don't have at the moment. It concludes that the costs of setting up those two services would be considerable, but that, over time, they could become cost neutral. There are issues of where those benefits would accrue to, so, for example, it might be expensive for the jobcentre to put a lot of money into it, but the jobcentre wouldn't be getting the financial benefits from it—there'd be issues about the funding of it.
I think there is a case that if you take an invest-to-save model, there is a case to be made there. We've got the integrated autism service, we've got part of that, part of what the National Audit Office said; what we don't have at the moment is the employment support part. I'd strongly argue that that would be an important thing. But the report is very clear: it would be expensive to set up a proper employment support service, which brings me back to the resourcing question. That money has got to come from somewhere to set it up in order for you to be able to reap the benefits further down the line in terms of, for example, fewer mental health problems, so it's savings for the health service, fewer people going into residential accommodation, so savings for the housing sector, more people in work, so savings around benefits, and so on. So, you do have that issue about—the people who the service are paying aren't necessarily those who will receive the benefits from it. There is undoubtedly a case for an invest-to-save model, but it's very clear it would be expensive to set up and it would take time to pay off from the National Audit Office.
And I don't suppose it evaluated the cost benefit to the individual of having a gainful path through life, with purpose and support.
No. It does talk about—aside from the pure financial benefits, there is undoubtedly a huge benefit to individuals of, for example, being able to find meaningful employment, of having better access to mental health services where you need them, all those sorts of things that are really important to well-being and to flourish, undoubtedly, but are, as you pointed out, harder to put a financial value on.
Is there anything else you want, any other comment you would like to make about this that we've not touched on, or anything like that before we close?
I think the other thing—and I touched upon it a number of times but I never actually talked about it—is the issue around data collection, which is something we looked at in the evaluation of the first autism strategy. One of the things the first autism strategy was trying to set up was lots of databases of numbers of people with autism. It proved very difficult to pull together those databases because, although the data is there, people with autism are known to services, they're known to education services, they're known to health services, they're known to social services—they've all got different databases, and it's very difficult to pull all that data together into a single database of people with autism.
I think, then, there's a further question about what does that actually tell you? Just knowing the numbers of people who—the numbers themselves don't tell you anything about needs, and our conclusion was, in many ways, you could rely upon existing data on expected prevalence rates to plan most services. Where you might want to look at collecting data is if, for example, you wanted to know, what proportion of people we are assessing and diagnosing. But you're not doing that to identify a need to have an assessment and diagnosis service, you're doing that to find out how effective our assessment and diagnosis service is. Are we assessing and diagnosing as many people as we'd want to? I suppose a small caveat around that is that, for people with more complex needs, where you often need a much more bespoke service solution, there is a real case for collecting much richer data about individual needs. But, again, you probably don't do that by setting up a spreadsheet and asking the service, you'd do that by talking to people about what they need in order to think about what the service solution is for them.
Okay. Any other questions, Members? Rhianon, you're looking enthusiastic there, if that's the word. [Laughter.]
Well, you did ask, Chair. [Laughter.] With regard to your positioning around the fact that there is a statutory code now and the impetus has moved us in that direction because of the concern around—. It has been mentioned that, at the moment, there is still a disparate service and different health boards are operating differently around what is, potentially, a national model, or a national model. How do you feel, bearing in mind that this is very early stages and it's embedding, that the statutory code will be just as effective in providing the outcomes for autistic children and adults across Wales as a Bill, without extra resources?
I genuinely don't know the answer to that. I don't think I've got enough information to make a judgment.
Okay. And you don't have an opinion? I like opinions. [Laughter.] Okay, I won't bully you, or the Chair will tell me off.
Grêt, diolch yn fawr. Diolch yn fawr am eich presenoldeb y bore yma a diolch yn fawr am ateb y cwestiynau a darparu'r wybodaeth ffeithiol. Wrth gwrs, mae materion o opiniwn lan i ni, onid ydyn nhw? Ond diolch am y ffeithiau. Fe wnaf i gadarnhau y byddwch chi'n derbyn trawsgrifiad o'r cyfarfod yma hefyd i allu cadarnhau i chi ei fod yn ffeithiol gywir. Gyda hynny o ragymadrodd, diolch yn fawr iawn i chi am eich presenoldeb.
I fy nghyd-Aelodau, fe wnawn ni dorri nawr am bum munud i gael paratoi gogyfer y tystion nesaf. Diolch yn fawr.
Great, thank you. Thank you very much for your presence this morning and thanks for responding to our questions and providing this very factual information. Of course, matters of opinion are up to us, aren't they? But thank you for the facts. I will confirm that you will receive a transcript of the meeting to check for factual accuracy. With that much of a summary, thank you very much for your presence.
To my fellow Members, we will now break for five minutes as we prepare for the next witnesses. Thank you.
Gohiriwyd y cyfarfod rhwng 11:11 ac 11:20.
The meeting adjourned between 11:11 and 11:20.
Croeso nôl i sesiwn ddiweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 4 ar yr agenda rŵan y bore yma, ac rydym yn parhau efo'n trafodaethau ni yn craffu i mewn i Fil Awtistiaeth (Cymru). Mae'r sesiwn dystiolaeth ddiweddaraf yma gyda Dr Dawn Wimpory a Dr Elin Walker-Jones. Diolch i chi am eich tystiolaeth ysgrifenedig ymlaen llaw.
Felly, os caf i gyflwyno'r ddwy ohonoch chi: yn gyntaf, Dr Dawn Wimpory, seicolegydd clinigol ymgynghorol, arweinydd anhwylder sbectrwm awtistiaeth Bwrdd Iechyd Lleol Prifysgol Betsi Cadwaladr a darlithydd ym Mhrifysgol Bangor—croeso i chi—a hefyd Dr Elin Walker-Jones, seicolegydd clinigol ymgynghorol Bwrdd Iechyd Lleol Prifysgol Betsi Cadwaladr. Croeso i'r ddwy ohonoch chi. Bydd y meicroffonau yn gweithio yn awtomatig; nid oes eisiau i chi gyffwrdd â dim byd. Mae'r Aelodau wedi darllen yr adroddiadau i gyd mewn manylder, felly, fel sy'n draddodiadol yn y pwyllgor yma, rydym ni'n mynd yn syth i mewn i gwestiynau, ac mae'r cwestiynau cyntaf dan ofal Julie Morgan.
Welcome back to the latest session of the Health, Social Care and Sport Committee here in the National Assembly for Wales. We have reached item 4 on the agenda this morning, and it's a continuation of our discussions and our scrutiny into the Autism (Wales) Bill. The latest evidence session is with Dr Dawn Wimpory and Dr Elin Walker-Jones. Thank you for your written evidence submitted beforehand.
So, if I may introduce you both: first of all, Dr Dawn Wimpory, who is a consultant clinical psychologist, the lead for autism spectrum disorder in Betsi Cadwaladr University Local Health Board and a lecturer at Bangor University—welcome to you—and also Dr Elin Walker-Jones, who is a consultant clinical psychologist at Betsi Cadwaladr University Local Health Board. Welcome to you both. The microphones work automatically; you do not need to touch anything. Members have read all reports beforehand in detail, so, as usual in this committee, we'll go straight into questions, and the first questions are from Julie Morgan.
Bore da. Could you set out your general views on the autism Bill and the reasons why you think primary legislation is the solution to the issues that face people with ASD?
I've been directly and indirectly involved with strategic action plans for autism for the last decade, so I've seen the effects of Government trying to impact on autism without legislation, and I'm quite excited that there's now some move to act in a clearer way and a more enforceable way. I've got direct experience of managing a database of people with autism up to the age of 19 in the six counties of Betsi Cadwaladr, and Welsh Government charged me with doing that—I think we began in 2012, when we started to collect data, and that was done in anticipation of rolling the database out across Wales. It's been quite successful for those six years and the six counties have consistently collected data. We've made it an obligation on clinicians in our health board. The software for collecting that data already exists across Wales.
I'm aware just of a little bit of your committee meeting that I saw this morning with Duncan Holtom, and that there are concerns about levels of diagnosis. A really strong point that I want to make is that there are internationally recognised levels of autism, so it should be around the 1 per cent level. There's international research very thoroughly and clearly making that case, making that obvious. What we have in Wales, as in parts of England, is that the diagnostic levels vary widely, but we don't know where they vary. So, I know across our health board, the three areas of our health board—I know they've gone through phases of diagnosing three times too many, twice too many, not enough. So, unless we have that information we don't actually know: are we talking about the people who we're wanting to help? And where we have areas who are diagnosing twice as many people as we should be diagnosing, there's a real risk that there are lots of children or adults there who are going to be getting a service who shouldn't be having a service, but actually need another service.
So, we need a bit of clarity about who it is that we're directing services towards and who these people with autism are. If we recognise it is a continuum, we need some guidance about where the cut-off point is. Unless we count our cases we won't really be able to have that clarity. So, we have got the software for that particular database across NHS Wales. That's already set up. It's currently being used—it's called CYPrIS—it's being used in Aneurin Bevan, which is the first health board outside Betsi Cadwaladr to be using it. I just feel that any other approach that doesn't actually count how many cases we're talking about won't know what we're doing across Wales, won't know where we're wildly missing cases or where we're wildly overdiagnosing.
We certainly need an obligation on clinicians to record their diagnoses, and it was a major obligation on our clinicians, and that's how we got them to do it. We didn't ask them for goodwill—it became a responsibility of the diagnosing clinicians to record each diagnosis that they made, and that's worked successfully.
So, I see that as recognised within the Bill. I also see that we have, for example, in the code that's recently been outlined—there's a suggestion that the GP database system could be used to record diagnoses. But the research using GP database records of autism—very thorough research—gives diagnostic levels lower than we've had in Betsi over the last six years. So, I've got evidence that, really, GPs are not picking up, not recording the autism in the way that, if the autism clinicians record it, then it gets done directly. I think they're more invested in it. I think there are loads of responsibilities and burdens on GPs already, and autism is not their priority.
I suppose, lastly, I think the Bill is really of value because it identifies autism as something that requires attention. Autism is different from other learning disabilities or mental health problems. It's something that has parallels with each of them, but it's the very bone of the connection between people—it's how we connect, it's how I'm communicating with you now—we're all using the parts of ourselves that are not autistic to make judgments about me and each other, and to connect with each other. Autism is a disability in that area, so it's very important and it's different from different types of learning disability, which are cognitive, intellectual disabilities, and it's different from emotional problems, and that needs to be recognised.
So, at the moment, one of the strategies has been to develop a neurodevelopmental service for children with autism, and they are combined with children with attention deficit hyperactivity disorder. So, my experience as a clinician is that on our waiting lists we now have lots of children who've come from CAMHS who have query ADHD. If it's not ADHD, it's likely to be some emotional family problem, but they're being treated by, or assessed and waiting, sometimes a year or two, to see a clinician who's got expertise in autism and maybe ADHD, but not in those emotional areas that that child needs attention in. So, there a child sits in the waiting list for a year or two, eventually gets seen, because the waiting list has got much longer, because it's broader now than just autism, and they wait to see someone who then feels obliged to give them some sort of assessment because they've waited so long.
I think a really good thing about the Bill is that the Bill is saying that we ought to adhere to NICE guidelines—that we ought to have a time whereby an initial assessment is given to a child. It's not a complete assessment, but it's the start of the assessment, because then at least we know who we've got on the waiting list. And of course it would require resources and reorganisation, but at least we'll know who's on our waiting list. Otherwise, we've got children going down the ASD route that maybe should never be going down that route, and it's a long route at the moment. So, I think it's appropriate that we address autism and identify it as something special.
A gaf i ategu pob dim mae Dawn wedi ei ddweud eisoes? Rwy'n hollol gefnogi pob dim.
If I could endorse everything that Dawn has already said. I support every word of it.
I'm aware as well that there's a discrepancy between what service users are saying and what services are saying from the—I think it was the consultation response. So, I'm aware that service users are saying that, yes, they desperately need a diagnosis. However, services are saying, 'Whoa, we don't need legislation for this.' And I think, despite the fact that I absolutely agree with everything that Dawn has said, the question, really, is about creating a disability hierarchy, and I am worried about that, and I want to ensure that that factor is discussed properly.
As Dawn said, people fall between the two stools of mental health and learning disability services even now, even—
Faint o flynyddoedd sydd ers y strategaeth—2008?
How many years have passed since the strategy? I think it was published in 2008.
Twelve years since the strategy, but people are still not getting an appropriate service, and not appreciating the difference between autism, the spectrum, and mental health and learning disability. It's different. We need to maximise these people's opportunities to contribute to our society because, absolutely, autism probably is of an evolutionary advantage in our current society.
The worry I have about not having legislation is the fact that, when there were far more financial resources available in 2008—since austerity, money has got tight and money is no longer ring-fenced at local authority level, which is of great concern when you already fall between two stools.
Gobeithio bod hynny'n gwneud synnwyr.
I hope that makes sense.
Ydy, bendigedig. Rhianon sydd â'r cwestiynau nesaf.
Yes, excellent. Rhianon has the next questions.
Thank you, Chair. In regard to the comments that you've made, the Cabinet Secretary, as you've already referred to, is very keen to promote the consultation on a statutory code, and I'd like to really unpick where you feel that legislation, without extra resources, will compare and contrast to a statutory code with the plethora of very new initiatives that are embedding in the very early stages across Wales at this moment in time. So, my question, really: what added value do you believe the Bill will implement across Wales, compared to effective implementation of the current initiatives, and the potential statutory code?
I think that the Bill has a better long-term perspective and long-term commitment. My experience of strategy initiatives is that they are well funded—quite a lot of money comes out, but it comes out later in the financial year, it has to be used up by the end of the financial year, and we don't know if there'll be more money next year. And that's my experience of how it's been, really, over the last 10 years—I've been working in autism for 30 years, but it's since the strategy. Then, obviously, there has been an initiative, and it has been relatively well funded, but the experience on the coalface is it feels haphazard. It feels like, 'Here's this money, we've got to use it now, otherwise it will go, and we don't know if it will come again.' So, we can't appoint people, we have to contract out, or appoint people temporarily. It makes things very difficult to plan and organise. I think, if we had a plan that was committed, and where we'd know what's going to happen, then I just feel we'd be able to plan better.
So, are you talking about funding, extra funding commitments, or the fact that it would be a very long timescale, planning-wise?
Well, not necessarily different funding, just, if the funding was clearly there, available, and we knew what was going to happen, then we could appoint permanent or for a particular period.
Yes. And so we could progress much better. We wouldn't be needing to say to families, 'Well, your therapy might stop at the end of March, or it might start again. Oh dear, we haven't heard about the grant yet, we've got to wait until September', and then we've got to use a year's grant in six months. That's the typical experience of what it's like working under the strategy, and I'm not clear, really, that a statutory code would be different in terms of how the funding is organised.
Why do you think the funding will be different under a legislative proposal?
Well, if there are legal obligations, then I imagine that the finance is tied in with those legal obligations, so the finance might not be different. But, at the same time, I imagine that stipulations would have financial commitments attached to them, even if the finance is not greater than what's currently offered within the code.
Which leads me into the last question that I have, which, really, is just reiterating what the Cabinet Secretary stated last week, that it would not result in more money being in the system. So, in terms of the existing resource envelope, your position potentially would be that you think you would have more ability to forward plan over a longer term with that envelope.
It takes a long time in order to establish that you've got the right prevalence levels. So, it would enable us to record who's got autism and where—where are the pockets where the kids are not getting diagnosed, or adults are being overdiagnosed, for example? It would help us to iron those out, and it would be appropriate to say that we want to adhere to internationally recognised levels of autism. We don't really believe that Wales has got twice as much autism as other countries—
Can I interrupt, because you've made the point, and I do understand your point, and I think it's very important to make? But in regard to the difference of having it in primary legislation, or having the ability to do it via statutory code and embedded initiatives and the practices across Wales, why do you feel that having it in primary legislation, without extra resource, will make that huge difference? Because if I just go through this, the royal colleges, the NHS Confederation, the community of practice for adult diagnosis and the integrated autism service, the Royal College of Psychiatrists—I can go on—actually are all calling, and some of them may or may not be at the coalface, as you are, which is why you're here today—they're all saying, 'We need time so that current initiatives can embed, so that we can evaluate them effectively.'
But we've had that experience of strategic plans through 10 years, and it doesn't work—it's too temporally funded. It's not done with a long enough anticipation.
So, that window is very important to you, in terms of being able to forward plan, then. That's what you're saying. Have you a comment, Elin, on my questions?
Eto, rwy'n cytuno â beth mae Dawn yn ei ddweud. O leiaf drwy gael deddfwriaeth gadarn, mae'n golygu bod yna oblygiadau cyfreithiol ar bawb i ddarparu gwasanaethau, yn hytrach na bod yn ddibynnol ar fympwy. Ar hyn o bryd, nid ydy'r arian ar gyfer awtistiaeth wedi ei ring-fence-o mewn llywodraeth leol, ac felly mae modd rhoi'r pres i unrhyw beth arall, achos mae yna gymaint o anghenion mas yna. So, er mwyn sicrhau bod y pres yn cael ei wario ar anghenion pobl ag awtistiaeth, mae angen deddfwriaeth.
Mae'n rhaid i fi ddweud, buaswn i'n lico gweld mwy o bwyslais yn y ddeddfwriaeth ar wasanaethau cefnogaeth, triniaeth ac yn y blaen, yn hytrach na'r pwyslais aruthrol yma ar ddiagnosis. Rwyf wedi sôn yn fy adborth ynglŷn â datblygu sgiliau gwytnwch ac efallai bod hynny'n rhywbeth i'w ystyried ar draws y boblogaeth. Efallai nad yw hynny o ran remit y pwyllgor yma heddiw, ond, yn sicr, mae e'n rhywbeth i'w ystyried yn y dyfodol.
Again, I agree with Dawn's comments. At least by having robust legislation in place, it would mean that there are legal obligations on everyone to provide services, rather than it being reliant on arbitrary decisions. At the moment, the funding for autism isn't ring-fenced within local government, and therefore that funding can be provided to any other areas, because there are so many needs out there. So, in order to ensure that that funding is spent on the needs of people with ASD, then you do need legislation.
I have to say that I would like to see more emphasis in the legislation on support services, treatment and so on, rather than this huge emphasis on diagnosis. I've mentioned in my evidence the development of resilience skills, and that's something that may be for consideration across the population. That may not be for this committee today, but it's certainly something that needs to be considered for the future.
Thank you. That was really interesting. My questions are all about diagnosis times. We've rehearsed that argument quite a bit. I think I'd really like some clarity on the suggestion in the Bill that we'd adhere to the NICE guidelines, that we'd have 13 weeks from referral to first—not diagnosis, but the first appointment. Am I correct on that?
You are correct on that. I've got a really strong concern in relation to it. So, I sat in a regional integrated autism service meeting, so that's the IAS that's established through the strategy, and I understood the national lead within that meeting to be saying that the Bill would enforce that diagnosis should happen within 13 weeks, and so, of course, it wasn't practical. I wasn't sure about that, but then I spoke to her afterwards and I said, 'No, actually, the NICE guidelines say you need to initiate assessment within that time.' When they then saw the regional IAS contribution or response to the consultation on the Bill, there was quite strong feeling that that 13 weeks was just not reasonable, just not practical. It hadn't yet been submitted, so I wrote to them and said, 'Look, I think you've misunderstood—it's not 13 weeks to diagnosis, it's 13 weeks to starting assessment.' And that response to the consultation was then changed, but the wording remained the same. So, they remained equally upset about having to initiate the assessment process within 13 weeks as they were at having to diagnose within 13 weeks.
So, that troubled me about how the Bill was being represented in IAS, which is, after all, the strategy movement from Government to work with people with autism. And it felt that there wasn't the best information there, and I worried whether that national lead had inadvertently—I'm sure she's great, but she's relatively new—ill-informed other regional IAS groups, which would then impact on their feedback on the consultation to the Bill. So, that's a concern about the feedback for the consultation. It's also a concern about how well is IAS really working? Our experience as clinicians is that IAS, certainly at the moment, is staffed by people who've got less experience than those clinicians who are just working within the ordinary services for autism. So, I just wanted to share that because I was frightened of getting—[Inaudible.]—you understood what I meant.
Yes. It's slightly worrying, isn't it, that the delivery mechanism actually doesn't understand that fundamental point?
Yes, and when I did raise the concern, then the social worker wrote to me and said, 'Well, how long does an assessment take?' And I thought, 'Well, if IAS don't know how long an assessment takes, how can they be outraged that they have to diagnose in a certain amount of time?' So, that's the reality. It's not their fault. They've been given lots and lots of money and those of us who are outside of IAS go to them and say, 'Please could we have money for this?', and it's hard for them to understand quite why we need it because they haven't got that experience with autism yet. They will over time, but it might be that the time it takes for them to get that experience accrued is the time that the strategy or the code of practice applies, and then it might well dissolve, whereas if there's legislation, it will ensure that there are standards that we're going to adhere to and work together for and that there'll be more of a long-term commitment.
It sounds to me, to be frank, that the outrage is less about what the target is, but more about the fact that there's a target—whether it's 13 weeks, 26 weeks or whatever it is. Elin, do you agree with Dawn's assessment of the fact that it is 13 weeks from first referral? The other bit I just wanted to flesh out was that I was very taken, Dawn, by your argument that a lot of children are being put into the system, and that they're all waiting years and years and years—Pembrokeshire: seven years we've had—for an autism assessment, but that they might actually get there and somebody turns around and says, 'Actually, it's not autism; it's this, that, or the other.' And, therefore, I'm kind of taken by the argument that if we have a quicker referral, then you're going to be able to put those children in the right space far more quickly and leave the autism route for those who do have autism. Just could you flesh that out a little bit more? I think there's no point talking about waiting times, because we all know that waiting times are horrific all over Wales. In different areas, some are better than others.
But Betsi alone knows how long its waiting times are, and there's accurate information in terms of, from referral for autism to diagnosis for autism. So, that's not waiting times for the assessment to start; it's when do you get referred for autism and when do you really get the diagnosis. And because we have the database there, we're the only health board that really knows that. Other people can tell you how long people wait to start to get assessed, but not how long it takes to really get the diagnosis.
Well, actually, can I, sorry, just go off-script again slightly? Because that's a very interesting comment. About three years ago, I did an FOI on Hywel Dda—we obviously have the three counties—on how many children were waiting for an autistic assessment. And it was something like—. In Ceredigion, it was something like 14 or 20 children. In Carmarthenshire, it was something like 190 or 200. And then, in Pembrokeshire, it was 350 or 400, which is years, because, you know—. But it boiled down to the fact that it was because they had different criteria. So, in Ceredigion, they used speech and language therapists and all these people, whereas Pembrokeshire said, 'It's got to have a paediatrician involved.' So, it was kind of a different methodology.
Ond mae canllawiau NICE yn dweud bod angen pediatrydd neu seiciatrydd plant i fod yn un o’r tîm creiddiol ar gyfer—.
But the NICE guidance says that you need a paediatrician or a child psychiatrist to be part of the core team for—.
Sorry, shall I say it again?
The NICE guidelines say that you need a child psychiatrist or a paediatrician as a member of that core diagnostic team.
Mae'n bwysig iawn. Mae’r ddeddfwriaeth arfaethedig hefyd yn sôn am—.
It's hugely important. The proposed legislation also mentions—.
Sorry, you've taken them out again. I'm sorry.
I'm sorry; I'm getting really confused here.
Mae’r ddeddfwriaeth arfaethedig yn enwi’r gwahanol broffesiynau sydd angen bod yn rhan o’r tîm amlddisgyblaethol. Efallai ei bod yn or-benodol, a dweud y gwir. Nid ydw i’n siŵr beth wyt ti’n meddwl am hynny, Dawn.
Ac eto, rwy’n cytuno; mae canllawiau NICE yn dweud bod angen 13, ei bod yn iawn cael 13 wythnos o amser rhwng y cyfeirio â’r appointment cyntaf. Dyna beth mae’n ei ddweud, nid diagnosis, ac mae hynny’n bwysig.
Ond mae eisiau cofio hefyd—. Ocê, senario: mae mam yn troi i fyny gyda phlentyn gyda’r GP ac mae’n dweud, 'Rwy’n rili stryglo gyda’r plentyn yma; mae ei ymddygiad e yn anodd', ac yn y blaen. A beth mae’r GP yn mynd i’w wneud? Caiff e ei gyfeirio ar gyfer asesiad awtistiaeth, achos dyna beth sydd ar gael. Mae yna lwybr gofal ynglŷn â chael asesiad ar gyfer awtistiaeth, ac efallai nad oes yna unrhyw fath o wasanaethau cefnogaeth ymddygiad ac yn y blaen i’r un graddau ag sydd ar gael ar gyfer awtistiaeth. So, mae yn cael ei weld fel y tocyn aur, ac mae hynny’n golygu ei bod yn clogio lan y system. Mae eisiau amrywiaeth o wasanaethau, nid dim ond asesiad ar gyfer awtistiaeth. Mae’n ddrwg iawn gyda fi glywed bod plentyn wedi aros am saith mlynedd.
The proposed legislation does name the various professions that need to be part of that multidisciplinary team. Perhaps it is overly specific, in all honesty. I'm not sure what your thoughts are on that, Dawn.
But again, I agree; the NICE guidelines state that it's right to have that 13-week period between the referral and the first appointment. That's what it says; it's not down to diagnosis, and that's important.
But we must also bear in mind—. Okay, let's give a scenario: a mother turns up with a child at the GP surgery and says, 'I'm really struggling with this child; his behaviour is difficult', and so on and so forth. And what's the GP going to do? Well, he'll be referred for an autism assessment, because that's simply what is available. There is a care pathway in terms of having an autism assessment, and perhaps there aren't any behavioural support services available to the same extent as are available for autism. So, it is seen as a golden ticket, and that means that it clogs up the system. You need a variety of services, not just an assessment for autism. I'm sorry to hear that a child has waited for seven years.
I'd like to chip in on that.
So, we've got a similar system. We are made of three old health authorities, which make our big health board, and they still tend to operate fairly differently, those areas. So, we've got different practices in terms of what tools are used, what professionals tend to be used, but we have records of that. And so, we are able to look at what tools are used, how they are used—so, where there is a standardised tool, which is supposed to be used in a certain way, like an IQ test, but specific to autism—whether it's being used like that or whether some toys are being taken out of the box and it's being used informally. And then we can correlate that information with where diagnostic rates are soaring, and also we can look at where assessments are being led by clinical psychologists, may be with or without a medic, and what the prevalence rates are like there. So, this information could be available for the whole of Wales if the Bill was adopted, whereas, within the code, there isn't that specification that we're going to look at the nature of the assessments and how they are done. And so, you can't see the colours that you were talking about there in terms of how that breaks this down.
I think the other point I wanted to make is that, at the moment—for children's services, at least; maybe for adults, I'm sorry, I don't know—a 26-week waiting list to the first assessment is recommended, is the standard, and is not being achieved. So, in a way, we know that strategic guidelines don't make things happen. That's why we, as clinicians, feel there needs to be legislation. We need to reorganise services so we can meet the children on our waiting list. Some of those children, even if we can see they're going to be diagnosed with autism and it's going to take a while, we might well be able to give them an early intervention, which means when we come to assess them they're doing much better than they would have been doing if they'd just sat on the waiting list. Other children we can redirect to the right service.
Actually, the picture's even worse, if I may just say, because I have evidence that was taken by my constituency manager that, in my area, when the 26-week rule came in, all new children who are now being referred have to fit into the 26 weeks. So, all children who have been on the waiting list longer have been pushed back, because there isn't an obligation—. Because it's stretched, they want to make the target of the 26 weeks, so they've gone in and the kids who have been waiting three years are still waiting three years.
Yes, thank you. I'm struggling to understand. I've heard what you've both said in this area, but perhaps I need a little bit more meat on the bones. I'm struggling to understand, when you have obligation through a statutory code, which is yet to be developed, which can be inputted in by clinical professionals on the ground who are dealing with this every day—and that's obviously a very important point—I'm struggling to understand why that can't be implemented via statutory code and why you specifically, for instance, need legislation to roll out—is it CITRIS, the sofware tool?
CYPrIS—children and young people's information system.
A national methodology and tool around that across Wales wouldn't necessarily need to have legislation. It could be done via other mechanisms.
In my experience, it's very hard to get clinicians to do something extra, because they're quite stretched.
So, in a way, it needs an obligation on them. I don't really understand why it needs to be a statutory code as opposed to a Bill. The Bill, it seems to me, is pretty comprehensive and has worked out what needs to happen. Then, the idea of a statutory code has been introduced, and you're telling us that it will be developed and that clinicians can input, and I'm thinking, 'I'm a clinician, I've given lots of my clinical time to developing strategies over the last decade and I haven't really seen the benefits of that for the children that I represent.' So, I'm quite wary of—and I probably would be invited to contribute, or maybe I won't be after this—being invited to contribute to a code that then maybe just hasn't got the teeth that legislation would have.
Thank you, Chair. You have referred already to the importance of data collection. Could you just tell us a bit more about the differences made in your area?
It's made clinicians aware of what they're doing. If you can imagine autism as 1 per cent of the population, the 1 per cent who are most socially impaired, just over half of those will have a learning disability as well. As a clinician, you have to kind of guess where that 1 per cent is, and that's quite hard. If you're in an area where you know that your area tends to diagnose twice as many children as it should, that's quite helpful information. So, for that child where you're not sure, it's probably best to hold off and not diagnose that child. If you're in an area where they're not quite diagnosing enough and you've got a child that you feel is on the boundary, then it's probably right that that child should have the diagnosis. So, it can immediately feed in in order that we get the right diagnostic levels. So, that helps. I don't know, is that answering your question enough?
It's helpful, yes. Last week, the Cabinet Secretary announced some inclusions in the forthcoming code of practice relating to data, such as GP autism registers, requiring autism as a stand-alone core theme in the population needs assessments in the social services and well-being Act. Do you think that is sufficient?
I think it's appropriate that the diagnoses are recorded within the NHS, because that's where they tend to happen. I've got experience, I run parental social support groups for parents, and anyone can come along who's concerned about autism. There, you might get people coming along because a teacher has said, 'I think your child's autistic', or a social worker might have said, but they've not actually done an autism assessment. So, I think it's appropriate that the diagnoses are recorded within the system that is for recording NHS diagnoses. We all, when our children are born, sign a piece of paper to ensure that we have electronic records on our children. The system is already set up within the children and young people's information system throughout Wales. So, I think, given that and given our experiences with the data, it's Taylor, et al. (2013) who have used pretty good GP databases to try and look at prevalence levels in autism, but they haven't found that they are what they should be because GP records are not so comprehensive.
A gaf i ychwanegu rhywbeth, os gwelwch yn dda?
Can I add something, please?
Rwy'n teimlo hefyd ei bod hi'n bwysig casglu data, a bod y data yn gywir—bod eisiau sicrhau y data cywir. Ar hyn o bryd, rŷm ni'n casglu data, er enghraifft, ar longest wait, ac nid yw hynny, o reidrwydd, yn adlewyrchu pa mor hir y mae plant eraill yn aros, a beth yw'r rhif cymedr. Hefyd, mae angen pwysleisio cysondeb ar draws siroedd.
Ond, roeddwn hefyd yn sylwi yn y bas data—y stwff sydd yn y Bil awtistiaeth—nad oes yna ddim cyfeiriad at gasglu data ynglŷn â siaradwyr Cymraeg. Mi fuaswn i yn awgrymu bod hynny'n cael ei gynnwys hefyd—bod eisiau casglu data ar ieithoedd sy'n cael eu defnyddio, naill ai gan y defnyddiwr gwasanaeth, neu'r teulu, neu'r ysgol, er mwyn sicrhau bod modd blaengynllunio ar gyfer gwasanaethau a sicrhau bod pobl yn gallu cael gwasanaethau yn yr iaith o'u dewis. Diolch.
I do also feel that it's important to collect data, and that it is the correct data—we need to ensure it's the correct data. At the moment, we are collecting data on the longest wait, and that doesn't necessarily reflect how long other children are waiting, and what the average number is. Also, we need to emphasise consistency across counties.
But, I also noticed that, on the database—and what's being collated in the autism Bill—there's no reference to collecting data on Welsh speakers. I would suggest that that should also be included—that we do need to collect data on languages that are used by either the service user, or by the family, or by the school, in order to ensure that we can plan for those services and to ensure that those people can have those services in the language of their choice.
Diolch am hynny; pwynt pwysig. Rŷm ni'n dod rŵan at yr adran olaf, a chyflyrau niwroddatblygiadol eraill. Mae Dawn yn mynd i ofyn cwestiynau ar hyn.
Thanks for that; it's an important point. We move on now to the last section, which is other neurodevelopmental disorders. Dawn's going to ask these questions.
Diolch, Cadeirydd. You both appear to have different views on the impact of the Bill. I think you're both saying that you support the direction of travel for that. Dr Wimpory, you were talking about previous autism strategies not having had adverse effects on other neurological conditions, whereas you, Dr Walker—
I don't think I said that, sorry, Dawn.
Oh, in relation to ADHD.
ADHD, yes, sorry. But, you're saying that you think, potentially, they could. It's the golden-ticket argument that you referred to earlier on, and the disability hierarchy that you were talking about. So, I just wanted to explore that a little bit further with you, in terms of your differing views on the potential impacts on other neurological conditions.
Wyt ti eisiau mynd gyntaf, neu wyt ti eisiau i mi?
Would you like to go first, or shall I?
You can, if you like.
I have concerns. I absolutely see that having an autism Bill would enshrine the rights of individuals with autism to have a diagnosis in a timely way, and also services that they need, and that that doesn't seem to be happening at the moment, even though we have a lovely strategy and even though—well, because, presumably, the lack of ring-fencing, and also because of the emphasis on diagnosis rather than on services currently, you know. ICF funding is abundant for—
Dydw i ddim yn siarad mas o dro nawr, ydw i?
I'm not speaking out of turn here, am I?
ICF funding is abundant for diagnostic but not for support and treatment services. Okay. So, there's that. I see that. But, I do have concerns about a disability hierarchy. I'm not the lead psychologist for BCU for autism. I work in general learning disability services—kids with learning disabilities—which has a huge emphasis, necessarily, because of the way that targets are worked out at the moment, on autism diagnosis. All of us are working in to autism diagnosis, and it's a joy, of course. It's lovely. It's a privilege to work with people with autism. Anyway—. Sorry about that. But, I also see that there are children and families out there with learning disability who will never get a diagnosis of autism or a genetic disorder or something because learning disability can be non-specific. That means that they don't access any specialist service. There's this perception that autism is the diagnosis du jour, and that really does worry me. That's not to say that we don't need legislation, but it does mean that we need to consider—sorry, you need to consider very carefully—the impact of that legislation and how you make sure that other children and families, adults—sorry, the whole population of people with learning disabilities—don't miss out.
I suppose that's part of the concern that some of us have about: where do you stop with legislation, in terms of identifying whatever condition and saying, 'Well, unless that is legislated for, they are not going to get the same level of service'? Is that a concern that you have, or not?
I think my response would be that autism is special for the reasons that I talked to you about before. So, if we think of Down's syndrome, maybe Ehlers-Danlos syndrome or cystic fibrosis, we kind of know what those things are, and those things that involve intellectual impairment. It's not completely unreasonable to group those children who've got different syndromes but different degrees of intellectual impairment together, because we know we're thinking about learning disability, intellectual impairment, as opposed to physical health or whatever. So, those examples that I gave weren't brilliant. Whereas autism—it sits on its own, it represents an area of development that we all take for granted that helps us manage as people and makes us emotionally okay, and it's a disability, it's a biological disability in that area, so it is unique. I think it is justifiable that it does have a Bill. I think it does sit differently from health problems or from learning disability and differently from mental health.
I think when you're worrying about children or adults who haven't got ASD, and the Bill maybe impacting badly on them, I'm thinking that it's going to mean that people who don't have ASD are not going to sit for a long time in waiting lists, then finding out that they haven't got ASD and, meanwhile, they haven't had help that would have put them on a different trajectory in the meantime. Particularly, I fear it for those kids who've got emotional problems, because if you're on that waiting list because your behaviour is disordered because of an emotional problem in your family, that needs addressing; it can't wait. So, I think it's right that autism is identified as different from mental health and different from learning disability.
And ensuring—I think the point that Angela was making—that if somebody can be seen within 13 to 26 weeks, actually, they could be identified at that point as not on the spectrum. So, therefore, they can be redirected. So, you think that that would be of benefit as well as just identifying somebody with ASD.
Yes, I think it's much easier for a clinician to do an initial assessment or the start of an assessment and at least say, 'I think you'd do much better to go to CAMHS and get some family therapy,' or 'I think you're right to stay on the autism waiting list and we need to give you the therapy that two-year-olds need or whatever it is'.
And we are aware that, actually, research supports the fact that autism creates parental stress to a higher degree than any other disability, because of the social-emotional factors. So, there is a precedent, I guess, or there is a rationale for providing additional support in that way.
Your commentary about the learning disabilities, I totally understand that. With the new Additional Learning Needs and Education Tribunal (Wales) Act 2018, if you had a child at 13 weeks that you could take out of the ASD route, because you'd seen them and said. 'No, it's a learning disability or social-emotional needs', because obviously somebody with a physical need will be picked up by health and then everything else starts to click in around that, I'm assuming that the children who are not on the ASD spectrum would actually then be picked up by the new additional learning needs Bill that's being implemented and that that would then start to bring in services for them, because it's defined as a learning disability rather than autistic spectrum disorder.
I don't know whether they need a diagnosis of learning disability to benefit from the additional learning disability Bill or learning needs Bill.
So, potentially, yes, then, I would have thought.