Y Pwyllgor Plant, Pobl Ifanc ac Addysg - Y Bumed Senedd

Children, Young People and Education Committee - Fifth Senedd


Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Janet Finch-Saunders AM
Lynne Neagle AM Cadeirydd y Pwyllgor
Committee Chair
Rhianon Passmore AM Yn dirprwyo ar ran Dawn Bowden
Substitute for Dawn Bowden
Sian Gwenllian AM
Suzy Davies AM

Y rhai eraill a oedd yn bresennol

Others in Attendance

Dr Phillip Connor Ymgynghorydd mewn Haematoleg Baediatrig, Arweinydd Ymchwil a Datblygu'r Gyfarwyddiaeth, Ysbyty Arch Noa i Blant Cymruhaematoleg
Consultant in Paediatric Haematology, Directorate Research and Development Lead, Noah's Ark Children's Hospital for Wales
Hannah Wharf Prif Arferydd, Y Comisiwn Cydraddoldeb a Hawliau Dynol
Principal, Equality and Human Rights Commission
Melissa Wood Uwch-gydymaith, Y Comisiwn Cydraddoldeb a Hawliau Dynol
Senior Associate, Equality and Human Rights Commission
Professor Sally Holland Comisiynydd Plant Cymru
Children’s Commissioner for Wales
Professor Simon Hoffman Athro Cyswllt, Prifysgol Abertawe
Associate Professor, Swansea University
Rachel Thomas Pennaeth Polisi a Materion Cyhoeddus, Comisiynydd Plant Cymru
Head of Policy and Public Affairs, Children’s Commissioner for Wales
Rhian Croke Cynghorydd Hawliau Dynol Plant, Hawliau Dynol Cymru
Children’s Human Rights Advisor, Human Rights Wales
Rhian Thomas Turner Uwch-reolwr Gweithrediadau, Ysbyty Arch Noa i Blant Cymru
Senior Operations Manager, Noah's Ark Children's Hospital for Wales
Sean O’Neill Cyfarwyddwr Polisi, Plant yng Nghymru
Policy Director, Children in Wales
Tim Ruscoe Swyddog Materion Cyhoeddus a Chyfranogiad, Barnardo's Cymru
Public Affairs and Participation Officer, Barnardo’s Cymru

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Sarah Bartlett Dirprwy Glerc
Deputy Clerk
Sian Thomas Ymchwilydd
Tanwen Summers Ail Glerc
Second Clerk

Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.

The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.

Dechreuodd y cyfarfod am 09:30.

The meeting began at 09:30.

1. Cyflwyniad, Ymddiheuriadau, Dirprwyon a Datgan Buddiannau
1. Introductions, Apologies, Substitutions and Declarations of Interest

Good morning, everyone. Welcome to the Children, Young People and Education Committee. I've received apologies for absence from Dawn Bowden AM. I'm pleased to welcome Rhianon Passmore, who is substituting this morning. Can I ask whether there are any declarations of interest, please? And we've now received apologies from Hefin David. Are there any declarations of interest, please? No. Okay. Thank you.

2. Ymchwiliad i Hawliau Plant yng Nghymru: Sesiwn Dystiolaeth 1
2. Inquiry into Children's Rights in Wales: Evidence Session 1

Item 2 this morning is our first evidence session for our inquiry on children's rights in Wales. I'm very pleased to welcome the Wales United Nations Convention on the Rights of the Child monitoring group, in particular Sean O'Neill, policy director, Children in Wales; Tim Ruscoe, public affairs and participation officer at Barnardo's Cymru; and Dr Simon Hoffman, who is an associate professor at Swansea University. Thank you, all, for coming, and thank you for the paper that you provided for us in advance of the meeting. If you're happy, we'll go straight into questions from Members, and the first questions are from Siân Gwenllian.

Bore da. You'll need your headsets, yes.

Cwestiwn cyffredinol i gychwyn, felly, ynglŷn â gweithredu’r Mesur yng Nghymru. Ydy’r Mesur wedi dylanwadu ar sut mae Llywodraeth Cymru yn gwneud penderfyniadau sy’n effeithio ar blant? Ydy o wedi dylanwadu'n gyfartal ar draws holl bortffolios y Llywodraeth, ac oes yna rai meysydd policy sydd angen ffocws penodol?

A general question to start, therefore, in terms of implementing the Measure in Wales. Has the Measure influenced how Welsh Government makes decisions that affect children? Has it influenced equally across all the portfolios of Government, and are there any policy areas that require a specific focus?

Okay. Diolch. Thank you, Chair. Thank you, Siân, for the question. We very much welcome the opportunity to give evidence today and very much welcome the focus on this inquiry. We are, as an organisation, as an alliance, very supportive of the Measure, and I think that's really important to kind of stress very early on, and in terms of what the Measure is trying to achieve across Government in terms of ensuring that Welsh Government do have due regard to the UNCRC in all their activities and functions.

As you'll be aware, the observatory and we in Children in Wales conducted a piece of research last year on the effects of the Measure—rapid research on effects of the Measure to date—and we were delighted to take on this work because this was the first opportunity we'd had to drill down and see what the effects have been over the last five years since the Measure's been in full force, and how the learning could help look at other approaches in Wales to take forward—other human rights treaties as well as ways in which the Measure could be strengthened and implemented.

In general, the study found that the Measure had achieved its objectives in embedding the CRC in policy making, and there was greater visibility and attention given to the CRC when officials on behalf of Welsh Ministers were going through the process. The CRC was being used more as a reference point for policy development and decision making in Wales very early on, and I think there was very much great support for the children's rights impact assessment— the CRIA process—as part of that as the vehicle to take forward the due-regard duty.

The Measure's also provided opportunities for external stakeholders such as us to use rights-based language more confidently in engaging with Welsh Government's decision-making process, and this was seen as a positive development. And there are new accountability mechanisms, as you're aware, within that, particularly around the compliance report and the CRIA.

It also recognised that we've gone a lot further in Wales than other parts of the UK. So, I think that's something else to celebrate very early on. However, I think we felt what emerged from that piece of research is that we're still on a journey, and if it's having the desired impact, as intended, and it's to be fully embedded across the whole of Government, there are areas and procedures that will require strengthening.

So, on a journey, you say, and you have pointed to some influence that this is having, but, in terms of influencing the outcomes for children, is it actually achieving that?

I think we very much saw that the Measure is the template to help Government develop better policies. So, I think that was really important. We didn't feel it was there to prescribe policy outcomes but to ensure that the CRC is taken into account when policy is being developed. However, of course, we would then hope that Measure develops better policies across the whole of Government that then leads to better outcomes for children and young people, which is the reason we're all here today.


I'd obviously adopt what Sean has said. I think I would add a little bit on what he said about the Measure's intent. The Measure was introduced with a very specific purpose, following on from a set of concluding observations back in 2008, and it was intended to influence the culture and policy development within the Welsh Government. The way I often put it nowadays is to get the UNCRC upstream in policy development and to influence policy making without necessarily focusing on outcomes. And, as Sean has said, the Measure has been very successful in achieving that objective, in particular through the introduction of child rights impact assessments and raising the visibility of children's rights within the Welsh Government.

I think it's interesting, the question, 'Has it been across all of Welsh Government?' Our research certainly found that it was not as pervasive as was intended, and, in particular, there were some departments, those departments perhaps more traditionally concerned with issues of children's rights, that were more inclined, for example, to carry out CRIA and to focus on doing CRIA effectively.

So, in addition to what Sean said, I think I would also emphasise that the Measure is not focused on outcomes, but it has, actually, delivered, I think, some key benefits in relation to outcomes for children. I think we can see, in particular by looking at the influence of CRIA within the Welsh Government and on policy and legislation, that CRIA has certainly led to some better policy outcomes, and, by that, I mean policy that we see as being more consistent with children's rights. So, for example, the child poverty strategy I think was much improved by the application of CRIA, as was guidance in relation to the well-being of future generations legislation. We've also seen CRIA influence the development of the social services legislation, as well as legislation on additional learning needs.

I get all that, but if it's not actually affecting—if it's not bringing child poverty down in Wales, what is the point of it all?

I think it is difficult. It's always difficult, actually, to measure through a decision to an outcome—an outcome of lived experience for people, in this instance, children and young people. That process is incredibly difficult to measure: how did this change link back to the policy decision? 

Your initial question was: how has the Measure influenced Government and also outcomes? To be very positive, as Sean alluded to, the environment is very much more children's rights focused. As a sector, we have looked at some of the things Government have done, not necessarily on a policy level, but things that they've done within their own structures. So, we've seen a fluctuation of what we think is how children might be prioritised. We've had a Minister for children, then we haven't had a Minister, then we had a Deputy Minister. So, there's been a fluctuation—children's sub-committee, no children's sub-committee. But, none of those processes seem to have been informed by any children's rights impact process and how that decision making might actually influence how a philosophical approach might be applied. 

I think there have been some positive outcomes for children and young people, and some of those are directly related back to some practitioners feeling better enabled to support a rights-based approach in delivering a statutory function, undoubtedly. It's not necessarily linked back to what they're expected to do, but what they feel they should do, so, sometimes, the positive impact is because people feel that they should be, but not that they're told to. For all of the impacts, positive impacts, that we've had on outcomes, we have more deficient outcomes stacking up behind us. Every time we've got something right, there's something else we haven't got right. So, it's a never-ending pot of outcome requirement, of need, and we'll never get to the point where there's no need, no matter how well we meet outcomes. 


Siân, have you got a further question, because also Suzy wants to come in?

Is that all right? I want to talk about CRIAs if that's okay; we might as well deal with that now. I heard what you said, that the CRIAs have made a difference, and that, actually, you're feeling generally positive towards them—

Oh, I thought that's what I was—. I'll leave it, if that's okay.

I thought you'd finished, so—.

Before you go on to resources, can I just ask—? You said that there were some departments that weren't making the grade in terms of proper due regard to children's rights. Are you able to tell us which they are?

I can tell you which departments we saw as doing more CRIAs, and doing them more consistently with good practice. They would be the departments like the children and families branch, for example, or CRIAs that are done in relation to education or child poverty. These are the ones that tend to be done better, and I go back, not only to our research in 2018 to confirm that, but some research I did in 2015 on CRIAs, to confirm that. 

As far as departments that are not necessarily engaging with CRIAs to the extent that might be anticipated given the due-regard duty, rather than talk about departments, I could perhaps give an example of where a CRIA wasn't carried out, which was on the Welsh Government's budget, where you would anticipate that there would be a CRIA, but there wasn't a CRIA carried out. And the reason given for that was that the Welsh Government was moving to integrated impact assessment, but that rather diluted the focus on the child rights impact assessment. 

Okay. Well, the committee's had a lot to say about the budget process, and I'll bring Siân in now for some more questions on that. 

Yes, just generally around the budget, have you seen positive examples of how the Measure's been used to influence how the budget is divvied out, basically? And are there good examples where—? Are there examples where this hasn't happened? You've talked in general terms, but, in more specific terms, have you seen budget decisions not taking into account the—?

In my own work, I haven't, and, in the research—as has already been said, the research had a very specific purpose, and it would have been very difficult for us, in the timescale, to focus on, for example, how the Measure has influenced decisions, and then, from there, how the Measure has influenced implementation through, for example, the allocation of budget or financial support to support particular policies. So, personally, I'm not aware of—. Certainly, I haven't worked on any study that has looked at the impact of the Measure in relation to budget allocations. 

Yes. The 2018 study—. I wouldn't say it's superficial. [Laughter.] I would say it has a—

It has a particular reference framework for the research, which was to look at the impact of the Measure in the context of the bigger objectives for the Measure, which was to enhance policy making at a cultural level. 

Rather than looking at any specific outcomes as a result of that. 


So, obviously, the next piece of research needs to be around that, I should think.

Well, the difficulty there is, when we set out to undertake the research, we did give consideration to how we could track outcomes from legislation, and the legislation sits at a particular level in the policy-making process—at the highest level in the policy-making process. And it would be very difficult to track causation from the framework into delivery. And, by the way, that's not just an issue with this research, with the research we carried out for the Equality and Human Rights Commission; that's an issue with research generally on legislative measures to integrate the convention. The causation problem is a problem, is a challenge, that faces all researchers. But, yes, there could be a discrete piece of work done on outcomes, and trying to relate them back to the legislative framework. 

Yes, I was just going to come in, just in terms of—just to build on the points that Simon's made. In terms of this year's budget, we obviously welcome the scrutiny from the three committees that's been undertaken on that. I think, for us, there needs to be a full impact assessment done against the budget. The UN committee has been very vocal on this, and provided general comment 19 on public budgeting to help states be more transparent in their budgets, because, whilst we’re seeing CRIAs against particular policy development, we haven’t got that holistic flavour of what’s being spent on children and what the impact is, where are potential cuts being made, or where there’s money moved from one pot to the other. It’s very difficult for us outside of Government to get a full flavour of what the impact of this is going to be on children’s expenditure, because, if the Government are promoting investing in children, which we would say they need to be more, we need to have a more transparent budgeting mechanism so we can see it more holistically. So, a full impact assessment, and full scrutiny against that impact assessment, is something that we would very much welcome through the CRIA process and, obviously, then a children’s budget statement—again, I know that the former committee has called for a children’s budget statement, but we’ve yet to have one—so that children and young people can see what is being spent on them as well.


In terms of delivering service, we’re in very difficult times. Commissioning arrangements are changing, commissioning arrangements are becoming more forthright in telling us how we might deliver services and the expectation of a commissioner in what we might deliver. We know that, when that happens, delivering in terms of a rights focus can frequently be seen as optional and not essential. And we do see that now that, if we wanted to deliver in a rights focus, our commissioner might take us back to, ‘We need you to meet these quantifiable outcomes rather than this qualitative outcome.’

You've partially answered it, in terms of the gap in terms of children's rights equality assessment and the more holistic overview that you talked about with regard to a children's budget statement, which would be welcomed. So, with regard to extrapolating a little bit around that, what is the current situation? Are you saying that there isn't that focus on children's rights equality impact assessments, and it is more around the integrated equality assessment? Can you just explain that a little bit more for me, because I'm slightly confused?

It's difficult to know, because the feeling I have, looking on at this process, is that we're in a period of transition to integrated impact assessment. I was very comforted by the fact that, when I looked at the template for the integrated impact assessment, the child rights element was virtually intact and—

I think the difficulty for me—

It hasn't been lost in terms of the template that’s applied. I think my concern would be around the process that takes place. So, the initial stage of the integrated impact assessment is a gateway stage to determine whether or not other impact assessments should be applied. And the gateway stage is very much focused on well-being and the well-being objectives. And that suggests to me that whoever undertakes that stage of the CRIA process will be an expert in that particular framework—in the well-being framework—not necessarily an expert in child rights impact assessment. So, it concerns me that, first of all, there’s not going to be a need identified for a full child rights impact assessment.

And then, of course, the next issue is an issue that has been, I think, plaguing child rights impact assessments since they were first introduced, which is, when the person who carries the child rights impact assessment—if you get to that stage—carries out the assessment do they have the knowledge and expertise to do it, or will they be someone who’s more focused on other policy objectives, such as well-being objectives.

So, you feel there is a potentiality then for it to get lost.

I think there's certainly the potential for it to get lost, and for a diminution of the expertise and experience that is brought to child rights impact assessment, yes.

Okay, we move on then to talk about mechanisms to deliver the Measure. Suzy.

Yes. I'm going to ask about the scheme in a minute, but, while we're still talking about CRIAs, let's do all that together. I was interested in what you said—that you think things have improved with CRIAs and there are certain departments within Government that seem to acknowledge them more than others, and you mentioned the obvious ones, really—the family unit and so forth. What have you got to say, then, to the children's commissioner's point that when she was trying to find out whether there were CRIAs done on the school uniform grant, the minority ethnic achievement grant and the all-Wales school liaison programme—things that obviously would have CRIAs attached to them, in my view—they weren't forthcoming? Is this as good as you think it is within Government?


I think there are some very good examples of some very good CRIAs and CRIA process, and, also, some good transparency around CRIAs. But, I think the research that I mentioned in 2015 identified particular issues around CRIAs. Some of those issues were to do with the expertise and the knowledge of those completing CRIAs, but some of them were also around the process and also the application of CRIAs, which I think we describe in our report in 2018 as patchy and inconsistent. I think that is a real problem. I think there also is a problem in transparency, in knowing which CRIAs have been completed and, also, at what stage in the CRIA process we are when we make enquiries.

Okay, that's an interesting point. So, there are three areas there: expertise, process and application. I appreciate that your report isn't even a year old yet, but have you had any feedback from the Welsh Government to say that they acknowledge that and giving you an indication of what they've done to change that, to remedy some of the weaknesses?

One of the positives is that the Welsh Government has set up a children's rights advisory group, and a number of us have had an opportunity to engage with officials who are developing CRIAs at an early process, prior to their being published. So, I think two recent positive examples have been the CRIA on the abolition of reasonable punishment, which was obviously presented to this committee fairly recently. That went into a great deal of detail in terms of international research evidence. You could tell that the person who had written it had engaged with the process, had engaged more widely and had really considered the whole CRIA process.

More recently, there's a consultation out now on home education as well. It's encouraging that Welsh Government are looking in more detail in terms of positive impacts on children's rights as well as negative impacts, and potential ways in which they can address those—ameliorate those—as part of the process. Because we very much see CRIA as being a working document, so there should be an opportunity then to reflect on the CRIA once the legislation or policy is out, and then possibly revisit that in a year's time. It should be a working document setting out, 'This is what our intention is and this is what expectation is, in terms of policy and legislation.' But, as we know, it doesn't always follow through in that way. So, there's an opportunity then to reflect on that and revisit the CRIA.

So, I think there are some good examples emerging. But, just to echo what Simon has said, one of the issues is that not all CRIAs are done at the right time, not as early as possible, when they should be done. They're not all being routinely made available publicly, although you can request them. In terms of the role of children and young people being involved in developing those CRIAs, that's a big question as well, in terms of how they're involved in the process. I think it's a really important accountability mechanism, the CRIA, because it's the main mechanism we have to see how the Government have taken the due regard duty into account. So, it's really important that they are done early on, they're done by people with expertise and who've had really good training internally of the Welsh Government, and then they are routinely made available for scrutiny and discussion.

It's good to hear that. So, we can expect, I would hope, a step change across departments now. Will you be involved in monitoring that? Is there another stage you could get involved in to see whether they've taken your advice, or is that for us then? It's a genuine question.

We're not currently involved in that piece of process. As I said, the research we did last year was on behalf of the Equality and Human Rights Commission. But, obviously, as those working in the area of policy, we take a keen interest in the standards of CRIAs, and we will have opportunities then to reflect those back to the central team in the Welsh Government.

I must admit, you are painting a very rosy picture of CRIAs that I certainly don't recognise as Chair of the committee. So, given your role as a monitoring group, are you aware, for example, that some CRIAs are actually being done after a policy has been introduced? So, we've got the retrospective CRIA going on. What's your comment on that? And also, you said that there are good examples emerging, but the Measure has been in place since 2011. Shouldn't we expect to have been much further on in this process by now?


Yes. I mean, there isn't a consistent process across the whole of Government for developing CRIAs and publishing CRIAs, so that's clearly evident in terms of others having to request CRIAs and having to then scrutinise and comment on them. So, there isn't a standard quality mark against all CRIAs across all departments, and that is a continuing concern for us. I guess what I'm saying is that we've had opportunity to reflect those back with Welsh Government to try and identify where there are some positive examples and where there are other examples that clearly were, as some people said in our study, an afterthought. It appeared that it was an afterthought and it was then too late—

So, can you share a couple of those examples with us?

We can have a look at what we gauged through the study, yes.

You're right that people have criticised the CRIA and the CRIA process. I think it's no surprise to Simon and Sean that I'm one of the critics. I think there's been a fundamental flaw, but I've also recognised that we needed to start somewhere, and that point of progress I welcomed and I think progress has continued to be made, but I think there is still some deficit.

One is that the 'A'—assessment—for me, should be 'analysis' rather than 'assessment', and it should be analysis of the effect on the lived experience, which we're only now starting to see emerge. I think you're right to say that the Measure has been in place for a long time. 'Should we have expected this sooner?' Me: 'Yes.' But I am a bit of an idealist, and I have to recognise progress and progress has been made. I would like to see an analysis, but I think where we've got to is possibly the limit to how far we can go with the current levels of understanding and knowledge, and I think there has to be quite a change in that level of knowledge and understanding within Government—so, officialdom—to enable a proper analysis process to move on. 

I also think that we should be expecting to see other human rights instruments being included in Welsh domestic law, as the CRC has been. Now, if we have to do that, then we have to go through a similar process, but we can't expect officials to understand 54 articles of one instrument, 50 articles of another, 30 articles of a third one, and go through a process that looks at those. We need to actually better enable people to understand the lived experience and the benefit and therefore the measures of outcome, so boiling it down to what we need to see—some simpler questions that will better enable us to provide a thorough analysis of a lived experience.

I think there is a danger, or there is a risk that there will be a degree of scepticism about CRIAs arising from the fact that I think we all accept that the CRIA process and the application of CRIAs is less than ideal within the Welsh Government. I made some recommendations in the report in 2015 as to how to improve the process, and those recommendations were accepted at the time by the Welsh Government. We were expecting that they would be implemented. I can say that I think the only recommendation that has been implemented is a change in the template, and I think the CRIA template that is used is much improved, but because of where it now sits within the integrated impact assessment process, it may be lost or insufficient attention is paid to it.

Insofar as things like capacity, knowledge, experience, the stage at which the CRIA is carried out in the engagement of children, as far as I'm aware, there's been hardly any progress made on any of that. And I am concerned that when the Measure was first introduced and in the scheme, we had a Measure implementation team, and they gradually acquired a great deal of knowledge and experience in relation to children's rights and I got the distinct impression, as someone looking on from the outside, that they were very supportive of CRIA processes internally, and that was certainly the outcome or the finding from my 2015 research. I feel that there's been a dilution of that expertise, and I want to say that the children and families branch at the moment has a great deal of expertise, but in specific policy areas rather than in relation to children's rights, and I think that is a particular issue that needs to be addressed.


Can I ask you what reasons the Welsh Government gave you for the delay in the review of the rights scheme? It's six years old now. You've all said that there have been issues with it all along, so it's probably no surprise that it needed reviewing, but of course we're looking at two years further on from when we were expecting this review. What did they tell you about why that happened?

The review of the CRIA?

Of the scheme. Right, okay. Well, we're aware that there is a process and the process has been delayed, and the scheme was supposed to be out last year and isn't.

Why is that? What did they tell you was the reason for that?

I think for us it was really important that they had missed their deadline, and it was really important for us to reflect back that we felt that it was important that they got it right in the first place before it was published, because I think the last thing we want to do is then provide comments on something that isn't fit for purpose. So, I think it's important that it is fit for purpose, and we wanted then to reflect that back to Welsh Government and say, 'Well, you've missed the target; let's get it right before it goes out there.' Because the children's rights scheme is so important. It is the manual for operation of the due regard duty across Government, and clearly the current children's rights scheme, as Simon has alluded to already, there have been changes within Welsh Government in the teams within the structure. It clearly does need a refresh. However, it is important to get that right, so that when Welsh Government is scrutinised, and more importantly, that when those are delivering CRIA they have a manual, they have a framework within which to operate. Then they can go to the central team, the co-ordinating team within Welsh Government, to get additional support and additional expertise to be able to more effectively develop the CRIA.

I agree with you that it needs to be right. What I'm trying to get to is: were you given any reasons why they didn't get it right sooner? I hear what Mr Hoffman has said, but you've had to conclude that yourselves, I think, rather than being given an outright explanation for the delay by Government. I don't want to push this too hard because of time, but if you weren't told, you weren't told. That's all we need to know.

I think it's fair to say there may be an issue of capacity within the team in Welsh Government at the moment. Notwithstanding the expertise in a lot of policy areas in Welsh Government, we have to look at where that team fits in with Welsh Government—the role it has, the status it has and the capacity and resources it's been given, and the attention it's been given more broadly by all Ministers, so the importance of the scheme by all Ministers. So I think we have to ask those questions.

Does that mean, then, that our shared ambition for rolling out the due regard duty to other public bodies is not going to be happening anytime soon because there isn't capacity there to start driving that?

I think, in terms of rolling out to others, there is an importance to rolling it out to other public bodies. I think that, so far, that's been done very piecemeal, I think it's fair to say. We've had duties placed through the Social Services and Well-being (Wales) Act 2014 and the Additional Learning Needs and Education Tribunal (Wales) Act 2018. We're really keen that we have it on the face of the curriculum Bill when that comes through. I think they're largely being developed by separate teams, whoever's in charge of those teams, so the team within the children's branch will be then support—. So, for example, the curriculum Bill, we have a due regard duty that we hope will be on the face of the Bill, which will then promote human rights education across the whole curriculum in schools.

The central resource team is the co-ordinating team, which used to be called the Measure implementation team, and it should be having a key role in terms of working with the education team around the CRIA and around the contents of the Bill. I think that support is really important, and that's something that, in terms of what we expect from the scheme, we expect to see a really robust co-ordinating team with sufficient capacity and financial resources to be able to work across the whole of Government and provide our expertise. But we also understand that training is being refreshed, internal training in Government, and that's crucial. Yes, there is online training, but we need face-to-face training, more routine training, of all the people that are involved. Otherwise we're asking officials in other teams to develop CRIAs in a vacuum or with less knowledge than is sufficient.


Okay. Do you have anything to add to that? I've only got one more question and then I'm finished.

As Sean said, the roll-out, if you like, or the push down of due regard to other public bodies has been piecemeal. The risk there, of course, is a degree of inconsistency, then, within those public bodies as to how children are treated in policy at that level. I share the ambition that due regard should be applied to all public authorities in Wales, but in terms of the capacity to support that, developing guidance, perhaps, or legislation to effect that, I would share Sean's concerns that I cannot see the expertise and the capacity within Government to be able to enable that at this stage.

The Social Services and Well-being (Wales) Act 2014 places a duty on individuals to give due regard, and the ALN Act places a duty on public bodies, and the discussion around those amendments, particularly around ALN, was that the imposition of the duty on individuals was seen as too onerous, which I disagree with quite significantly. And I think the duty should be on bodies, but it should also be on individuals—for individuals delivering the function of the Act. Why shouldn't a duty of due regard be on that individual?

Okay. Can you think of any examples where, if a due regard duty had existed, that, I don't know, either a local health board or a local authority might have acted differently?

Well, I think, in relation to housing, if there was a duty to have due regard to the UNCRC in relation to housing, for example, then local authorities might approach their discretion to not apply the intentionality provisions from a different perspective, because intentionality affects families with children and affects children. So, that might have been different, for example. But we can only speculate. I've certainly dealt with that issue in a feasibility report on the incorporation of the right to adequate housing, how the approach that local authorities might take to homelessness and, in particular, intentionality, might be different if there was due regard to the right to adequate housing, but also, of course, the right to adequate housing extends to children, so you can make an analogy with due regard to the UNCRC.

You could probably say that any element of services for the Traveller community probably suffers for not having a duty of due regard on individuals and public bodies.

Thank you, Chair. In your written evidence, you say that, despite the children's scheme setting out how children can make a complaint or challenge a decision the latest Welsh Government compliance report makes reference to no complaints having been made to date. Why is this? And have you been involved in shaping any changes to the forthcoming children’s scheme in this regard?

The research did, as you say, identify that there had been no complaints. We didn't press that in the research, because it wasn't within the scope of our research, but we did ask questions about it. Although it's not in our report, I think I can say with some confidence that, amongst the reasons that were given for a lack of uptake of the complaints procedure is that it's an adults' complaints procedure. It's a complaints procedure that the Welsh Government has in place for adults to complain about decisions and actions of the Welsh Government, which has then been bolted on to the scheme, if you like. So, it's not child-friendly, it's not accessible, and it's not the sort of mechanism that children necessarily would make use of. Those were the reasons given to us. We didn't push that any further and, obviously, it's not something that we were asked to examine in detail, so we didn't report on those findings in the report.

Can I just ask, then, what's the point of it if it's not child-friendly?

That's a good question. I think the idea, initially, was that there would be a complaints procedure that children could use that would be an alternative to the other form of challenging a failure to have due regard, for example, which would be the highly cumbersome and legalistic process of judicial review, which is inaccessible to most people, let alone children. So, the intention was a good one, I think, which was to have an informal procedure for children to raise their concerns that their rights were not being given due regard in policy making. It's just that the procedure that's been put into the scheme is not a procedure that is suitable to deal with complaints from children. 


Okay. So, is that going to alter, is it going to change, is there any initiative there to—?

I think that's one of the key asks of the next scheme, that there's a robust complaints procedure in place for children and young people to make representations where they feel that there's been a violation of their rights, or their rights have been overlooked. We need proper redress mechanisms. It is set out in the current scheme but it's clearly not fit for purpose, because young people may not know about it and clearly not accessing it by the compliance report. It's also difficult for anyone to make a complaint against Welsh Government. If you do look on the website and try and look for the complaints procedure, you click on the button, it will take you to the home page currently. There is a form that's available but, as Simon said, it's certainly not child-friendly, and it doesn't make reference to the scheme and the Measure in particular. The current system is not fit for purpose, clearly, but if we are going to create a culture of children's human rights defenders, we need to be able to give them ways in which they can make representation on their own or with others on their behalf. So, that's something we will definitely be calling for in the next scheme.

I would urge that because, as an Assembly Member, a lot of adults that come to my office don't feel empowered to make complaints, so they come to us and I make complaints on their behalf. So, really, I think if we're going to talk about human rights and children's rights, a fundamental requirement of that is that they feel empowered to come forward and say, 'There's something wrong here', and if that system isn't in place, I think it makes a bit of a farce, really, of the whole framework. So, I would be urging, really, now, going forward, for that to happen.

Yes, very strong. And then, in your written evidence, you say:

'The extent to which activities to date have directly achieved their intended aim of increasing knowledge and understanding of the Convention is difficult to gauge, given that no comprehensive survey of the whole population has been carried out.'

You go on to say:

'Welsh Ministers may wish to consider producing a national strategy for promoting knowledge and understanding of the Convention.'

So, how important is this and should it be a priority, or are there any other actions that may have more impact?

I think section 5 of the Measure is vitally important, because if we are going to embed UNCRC as part of our culture in Wales, people need to know about it and people need to understand the convention. So, I think it's really important that we increase knowledge of the convention, but that's only part of the process. We need to be able to increase understanding and then move towards where we're empowering young people to advocate on their own behalf or with others to defend their rights.

The compliance report currently lists a number of initiatives, and a number of resources as well, around sector-specific training for professionals, which is obviously welcome. There's clearly a role for the third sector in supporting this, and the civil society organisations and the commissioners and others to promote and raise awareness of the UNCRC, supporting the national intention that we do raise awareness, outlined under section 5.

What we found in our study, when we engaged with children and young people, was that often children have to—. You know, it depends very much on which school they go to, whether they learn about the CRC. It often depends whether they're involved in a youth forum or a youth council. There isn't a universal approach across the whole of Wales to raise awareness and knowledge of the UNCRC. It goes back to my earlier point around the due regard duty against the curriculum—if we had—because the majority of children do go to school at some point in their lives. If they all get an element of human rights education as a foundation within that, we should see the figures in terms of when we're asking children and young people, 'Do you know about the convention? Do you understand the convention? Have you used the convention to defend your rights?'—those statistics should be increased. So, I think there are some real opportunities now that we would hope the Welsh Government will grasp, and the curriculum has to be one of them.

There are obviously other ones in terms of public awareness more generally around not just children's rights, but I think human rights more generally, because I think it's fair to say we are living in uncertain times currently, and I think, if we are going to move towards being a Government of human rights, or a Senedd of human rights, we need to begin to put some investment into bringing the public along with us in terms of that dialogue, to challenge some of the negativity there is around rights. And I think there are opportunities—for example, there's the thirtieth anniversary of the CRC this year. There are a number of events, and there's publicity being produced. We would hope that that would lead to something that won't be one-off material, and that we can utilise that and promote CRC.

And another example I like to give is the current children's Bill. Obviously, there's an amendment being put forward now to raise a public awareness campaign around the changes in the children's Bill. Well, clearly, organisations have used the CRC to put forward really strong arguments in the children's Bill. There's no reason why this public awareness campaign can't begin to use rights language as part of that as well. So, there are opportunities. I'm not convinced they're all going to be grasped, but there are opportunities to increase awareness and understanding amongst children and young people of their rights.


Thank you. You've made the point that all children at some stage may access education in a school setting. What about children who are home educated? How do they become aware of their rights?

Well, I think that it has to be part of a process. I was saying that having it on the face of the curriculum Bill is just one part. There needs to be more public awareness—a public awareness campaign around what does a human rights approach look like. That educates professionals, educates grandparents, everybody—the whole population. So, regardless of who's caring for children, and their circumstances, in terms of their education status, everyone has a broad understanding of the position and the priority given to human rights in Wales.

So, would you agree with me, because the feeling that I'm getting here, in taking this evidence, is that there's a tremendous amount of work yet to be done in this regard?

Knowledge and understanding has increased, and it has increased since the introduction of the Bill. Is it comprehensive? No, it's not. I did a small survey of a small number of our staff, just to gauge what the levels of opportunities and understanding were in their experiences of delivering services with families and children. Most of those listed themselves as being very aware. Some of them listed families and children as being slightly aware—mid sort of table—but they couldn't identify opportunities for their own learning, and they couldn't identify opportunities for their children and families' learning. Now, that's notwithstanding the fact that people like Children in Wales actually deliver quite a lot of opportunities. But they couldn't identify them, they couldn't point fingers and say, 'Yes, there's lots of opportunities', and nothing particularly for the children and young people.

The experiences, I think, around children, and children's understanding, depend largely, geographically, on where they're going to school. There is a lot of emphasis in some primary schools on the UNCRC, rights-respecting schools approaches and those sorts of things—really positive. It doesn't really extend into high schools a great deal. Home-educated children—it is actually about the environment of education, not necessarily what you teach either, which promotes a rights environment.

Okay. We need to move on now to talk about the Welsh Government's response to the concluding observations. I've got some questions from Rhianon Passmore.

Thank you. So, with regard to what you've already stated, there seem to be some systemic application issues in terms of capacity, as well as co-ordination, across ministerial departments. So, in that regard, the concluding observations, in terms of the recommendations, as far as we're concerned, to publish a national plan to set out the progress made in implementing these concluding observations—do you consider that worth while?

Absolutely. Absolutely worth while. A lot of work goes in, in the planning stages before the state party inquiry in Geneva. We as a monitoring group prepare a report and submit a report, and work with young people around reports, to inform the committee's recommendation. It's massive—there are 150 recommendations from the CRC, and it's important that those concluding observations do take effect when they're brought back to the UK, and then they're brought back to Wales, around devolved competencies. At the moment, we don't have a formal detailed response to those concluding observations for 2016, in terms of identifying what are the specific actions of Welsh Government against those concluding observations within their competencies. And that is a continuous concern.


Why not? Have they given you any reason they're not providing a response?

I haven't had a reason, no. I think it's fair to say they issued a statement soon after the concluding observations were released, and then an anniversary statement in the second year and third year, and selectively looked at the areas which they were making good progress on, which is encouraging. There were some real positives from the concluding observations to Wales, but, obviously, there are still issues in Wales that we know about, in terms of child poverty rates, emotional well-being of children and young people, and they raised issues around the structures for engaging children and young people.

So, to you as a monitoring group—sorry to interrupt you—do you feel that you have the influence necessary? Obviously, great strides have been made in terms of where we started from, but, obviously, there are a myriad different basket of issues there that you've highlighted and referenced. So, how important, then, is the formal mechanism for Welsh Government to be able to address some of these points, to bring them all together?

It's absolutely important, because there isn't a formal mechanism currently to track progress.

Well, I think it would benefit the Government, certainly, when they come to influence the next state party report. So the Welsh Government will produce their own report then, to feed into the state party report. So if there's a tracking mechanism, which looks at the concluding observations, saying, 'Right, we're delivering this against that. We're taking forward, we're addressing this concluding observation', clearly, that systematic approach will enable them, in terms of the monitoring process, to make sure they are addressing the concluding observations, so that when the officials on behalf of the Ministers go to Geneva, they're fully informed in terms of what they've done against those concluding observations from 2016.

So how are you, as a monitoring group—to interrupt you again—influencing and pushing your argument forward to Government? Because it seems to make sense. What's not happening as far as you're concerned?

Well, we need a national action plan on the concluding observations. We said in our consultation that one was done by the last Government—a 'getting it right' plan—which set out the activities and the priorities they were taking place against. We haven't had that under this Government. We think that's urgently required. It's interesting the Scottish Government's required to monitor and also report against the progress they're making against the concluding observations. So, I see no reason why the Welsh Government shouldn't be doing similar.

We have called for that as part of our civil society work, heading towards the last round in Geneva, yes. We did mention that. And I think also we're really interested in the approach that the Equality and Human Rights Commission are taking in terms of adopting a formal mechanism to track progress across all human rights mechanisms. We're really interested in that, because there are many recommendations from the CRC committee, which are also referenced in other reports, like the convention against torture, the CEDAW recommendations, and on the persons with disabilities conventions. So, I think having one would help the Welsh Government track all the recommendations, and I think having a plan, or at least a strategy, to say, 'This is what we're doing against the concluding observations'—. Because I think it's very difficult to see how the concluding observations are being used on a day-to-day basis—they're not really generally being referenced in any policy or any debate. I don't come across reference to the concluding observations in my day-to-day work.

UN committees don't have a great deal of power. They have lots of power to make concluding observations, and then it's what you do about it. And the process is really how embarrassed are you going to be when you haven't done anything the next time. Up until very recently, the UK Government has not been embarrassed by inactivity. A plan that is delivered locally is something that people can be held to account against. It's their commitment to deliver on that observation and they can be held accountable against that.


Okay, and, from your perspective, you are very clear in terms of what you've asked for.

And I think you should really involve the children and young people as well, to be able to see what actions are being taken, because a number of reports went in from Welsh children and young people to inform those concluding observations, so I think it's a matter of courtesy that we do have a plan and a strategy against those concluding observations to demonstrate to young people directly that the Government are taking children's rights seriously. 

Can I just quickly add that the concluding observations—obviously because they come from the Committee on the Rights of the Child—are very useful, but they're drafted in such a way that they apply generally to the UK? There are some specific points that can be taken in relation to Wales, so they're very abstracted in many ways, which makes thinking about how they might be implemented in Wales quite difficult. I think the EHRC treaty tracker is going to be a really useful device there, because it does focus on what concluding observations are within the scope of devolution.

But I also think it's important to go back to the process. I think the process of reporting is as important as the concluding observations, and the Welsh Government prepared a very comprehensive report on children's rights in Wales as part of the lead-up to the examination of the UK. That was lost, of course, as it would be in the UK state party report, but, actually, it's the concluding observations in combination with that report that I think should drive any national plan for children and children's rights in Wales. 

So, you think the groundwork has already been done with that?

Well, it was a comprehensive report and there was a lot that could be taken from that, which does not then appear in the concluding observations. And, actually, Sean at Children in Wales, and for the monitoring group, has done quite a lot of work on tracking that through from the initial Welsh Government report into the state party report into the concluding observations. 

Just to be clear, this committee has had a clear focus on the concluding observations in our response to Stage 1 of the removal of the defence of reasonable chastisement Bill, because that was a clear call, wasn't it, from the UN?

Moving on to the optional protocol on communication, what is your view in terms of the potential benefit to children in Wales with regard to giving children a right to make a complaint directly to the UN, should we ratify that?

For me, the optional protocol, if we had access to it, would be of great benefit, but, of course, we're in the hands of the UK Government as far as that's concerned. I think the principle that the optional protocol represents—that children should be able to make complaints and should have a redress mechanism, although it's a rather weak redress mechanism at international level—is an important one. I think, for me, the focus would be not what the UK Government controls, but what we can control within Wales.

I put in a separate submission to the committee for this hearing, which largely covered what's in the submission from the UNCRC monitoring group, but there was one thing in addition within that, which talked about how Wales had taken a particular approach to incorporation of the UNCRC in 2011, which was suitable at the time in relation to where we were in devolution, and devolution, I think, and Wales, in human rights terms, have come a long way since then. And now, the Welsh Government and the National Assembly have powers around observing and implementing human rights generally.

I think, referencing work in Scotland, where there's a determination to incorporate the convention, and a particular approach has been taken to incorporation, which focuses on, from civil society at least, due regard, but also acting in compliance with a compliance duty as an aspect of incorporation, is something that we should look to now in Wales. We're at a point in Wales where we could actually give children the opportunity to seek redress via our own formal mechanisms, rather than look to an optional protocol, which personally I don't think is ever going to be an option for children in the UK. And we might want to think in Wales whether it is now time to try and move the Measure beyond due regard and think about how it can be strengthened by adding in a compliance duty, possibly along the lines that have been modelled by civil society in Scotland.

Okay, thank you. I think that's probably a really good point at which to stop, because that's certainly given us something to think about for our recommendations, because we've covered a lot of ground in an hour. So, can I thank you all for attending this morning and for answering our questions? 

As you know, you'll be sent a transcript to check for accuracy. But, thank you very much again for your attendance; it's very much appreciated. Thank you.

3. Ymchwiliad i Hawliau Plant yng Nghymru: Sesiwn Dystiolaeth 2
3. Inquiry into Children's Rights in Wales: Evidence Session 2

Okay, we'll move on, then, to our second evidence session, which is around the issues around health and children's rights. I'm very pleased to welcome Dr Phillip Connor, consultant in paediatric haematology, directorate research and development lead, the Noah's Ark Children's Hospital for Wales; Rhian Croke, who is children's human rights adviser at Human Rights Wales; and Rhian Thomas Turner, who is senior operations manager at the Children's Hospital for Wales. Thank you all for attending. We've got a lot of ground to cover, so, if it's okay, we'll go straight into questions from Rhianon Passmore.

Thank you, Chair. Welcome. With regard to, and if you can be brief, if that's what you wish—. Can you extrapolate and explain for us the difference between child and adult health generally, and, in turn, how they might need service delivery in a different fashion?

Okay, so if I take that, the spectrum of disease is different. Going through a life history, it starts off with babies being premature—adults don't get that—and they've got organs that don't work. With that, the side-effects of that, the sequelae of that, are different to what you see in adult medicine. Then, obviously, there's a group where their organs have only just been developed and forming, and then there's a group of children that don't have normal organs. So, that's a group that has significant health needs, particularly in the first year of life. Then, obviously, because they are new people, they've got—. Their genes are the first—. They've inherited them from their mum and dad and they get genetic diseases that become apparent quite early. That's significantly different. So, for example, for argument's sake, most of the disorders of the kidneys, the renal tract malformations, how your kidneys handle things, are genetic. So, there's that background of significantly different biology that's different to an adult that has been formed, has been living for a long period of time, and then stuff usually happens to them. There are elements of genetic diseases that strike in adult age ranges. They're unusual—things like Huntington's chorea, et cetera, but other things happen earlier.

So, then there are acquired things that happen to children. Things like the cancers that children get are significantly different. So, cancer is a stem cell disorder. In a growing child, the active stem cells are different to an adult. So, adults get carcinomas—lung cancer, breast cancer, prostatic cancer. Children don't get them. They do get leukaemias, and different subsets of leukaemias to adults. And they get things like neuroblastoma, hepatoblastoma—things that are really rare that you've probably not heard of—and they're different types of cancers and they need different treatments. 

So, significant clinical presentation with regard to the differences between adults and children. Thank you for that. So, with regard to your concern, I think, that's been presented around the access to good quality clinical research not being embedded effectively across health portfolios, could you extrapolate from your different perspectives around that and about a potential view that there's a lack of focus on paediatric research in Wales? I'd be interested to know more. I don't know who wants to go first.


Okay, I'll take that one. Nice to meet you all today. I’ll just give you a bit of an overarching perspective. So, the Measure and the application of the due regard duty may have helped raise the profile and visibility of children’s rights in policy development in Wales, but we concur with the other institutions submitting evidence earlier that this is both patchy an inconsistent, and only pertains to certain areas of policy.

In the area of health policy, and more specifically health research funding and good clinical research for children, we are concerned that its application has not been strong, and we consider that there needs to be further scrutiny in this area to discover why due regard may not be effectively applied. We believe that the Measure has not been used as such an effective device to influence the culture of health research funding and delivery, which is having a consequence for children and their human rights not being as visible as for adults. So, we believe that the children’s scheme needs to be better implemented. There also needs to be training for senior health civil servants who are responsible for supporting the Minister in the exercise of their functions to ensure that the duty of due regard is pervasive across health policy making. We are concerned that the other institutions have noted in their evidence submissions that children’s rights training is no longer compulsory for Welsh Government officials, and others have noted that Ministers themselves may not be receiving training in implementing the duty.

We are aware that the children’s rights impact assessment has not been rigorously applied to decisions regarding the delivery of funding for health research. And this concurs with the Hoffman and the Moore studies that CRIA is not being uniformly applied across all Welsh Government departments. My colleagues will refer in more detail to the Welsh Government activity-based funding model in due course, however, after several attempts over period of a year, we have asked Welsh Government to apply a CRIA to the review of the activity-based funding model. Perhaps because civil servants know we are giving evidence today, we recently received an e-mail to say that they will now apply CRIA to this process. We are waiting to see the evidence—

Sorry to interrupt you, and I'll come pack the paediatric clinical research issue in a second, because, obviously, this is of great importance. So, with regard to what you mentioned that they’re not applying a CRIA to, can you just explain—?

So, it’s called the activity-based funding model, which they’re going to go into in more detail shortly. There is a review of it, but what we’re saying is that we’ve asked, on numerous occasions, for a CRIA.

So, there's an issue around transparency of publication.

In March last year we realised that the activity-based funding model is going to change, and we've had concerns about the model for a long time, in terms of the way funding is paid to health boards, and we knew that this was changing. And they're looking to more of a value-based healthcare research model.  

No, you need to let—. We can't keep interrupting. Just carry on.

Okay. So, we knew that this was changing. I spoke to one of the civil servants who's leading on it, and said, 'Have you considered the Measure with regard to what you're doing?' They've e-mailed back and said, 'We will do this', but this was back in September, and they've already done a considerable amount of work on this. And I think one of our concerns, really, is they haven’t been considering this from the start of the process, and that we’ll end up at a point where we’re stuck with something that may or may not work for children.

We are, because, as we’ll address later on, we do feel that we’re in a poverty cycle in terms of paediatric research funding in Wales since 2015, since all of the changes came in. So, we are concerned that if we don’t catch it now, in terms of these changes, we’re going to end up stuck in this cycle, that both Phil and Rhian will allude to, for the next five or 10 years.

So, you’ve almost answered my final question. So, with regard to access to medicines, how significant are your concerns around that, in terms of access?

How detailed to you want the answer? The issue is that most children are actually well. So, if you have a system of reimbursing the NHS for doing research that involves 'per head' in the study, there are not thousands of children that are life-threateningly unwell, fortunately. A big study for us would be 200. A big study for adults would 10,000. So, if you have a recruitment base—people that come in—paeds always get hammered on that. We never get money—in terms of recruiting and paying for research nurses to actually then do the studies. So, though we only recruit 200, it turns out, when you do paediatric studies, they’re really detailed, they’re really terribly complicated. So, for example, to treat someone with leukaemia—take childhood leukaemia—it takes between two to three years, with complicated steps in the process and multiple randomisations around what you're going to do. The same goes for the other tumours. But you'd get the same reimbursement for doing, not wanting to be pejorative, a blood pressure thing. You get someone in, do the blood pressure—'Oh, it's high, have a tablet, do that for six months, see you later.' So—


So, the solution is—. Hopefully, we've thought this through in terms of the impact assessment, actually—the resource needed for the particular trials would, in fact, be appropriate for what is actually being undertaken, instead of, I suspect, a one hat fits all. So, there is a way of, potentially, invoicing around our activities or what the actual trial—'invoicing' isn't the right word. But you have the protocol and you can actually see what's going to happen over the next two or three years, and you can then plan in terms of what that would involve in terms of resource, whereas when one size fits all, you've recruited into a particular study—great—'Here you go, here's the money for it.' We always miss out in paediatrics—we're not going to get wins, we're not going to anywhere with that. It becomes very hard to do the studies.

Just to give you an idea, it's £1,000 for an interventional study. So, you get paid a one-off payment of £1,000 to recruit and to do all of the follow-up in these children. Our children can come back for a considerable amount of time. If they're neonates, they're followed up.

So, the numbers are small. Only about 20 children get leukaemia in Wales a year. They're not big numbers. Thousands of adults get cancer. If you do a breast cancer study, you can recruit thousands of women into it quite easily in Wales, but in terms of us trying to do children's cancer studies, it's quite hard. So, in terms of just keeping staff numbers going, because they're children, you can't use adult-trained research nurses—they have to be paediatrically trained research nurses. So, then, how do you keep that expertise in the department and how do you keep it ticking over? That's where we get discriminated against, we feel.

Thank you. I've got some questions now from Janet Finch-Saunders.

Thank you. Good morning. From your experiences, to what extent are children's rights taken into account in the decision-making process within health boards and trusts? For example, does the children's rights charter adopted by some health boards make any difference to the strategic decisions they are making?

Okay. I've recently carried out a detailed case study of one health board. However, the results are not yet published, so I can't share that with you at the moment, but, hopefully, I'll be able to share it with you before the end of the year. I do think that research does need to be undertaken across all health boards and trusts in Wales to determine to what extent children's rights are actually being taken into account in decision-making processes.

However, we can report from our own experience collectively of working across the sector that it is pleasing to know that there's been an increase in the number of children's rights charters and youth advisory groups across a number of health boards and trusts. However, there still does need to be further evidence of senior-level commitments. According to research undertaken by the Royal College of Paediatrics and Child Health in 2019, three out of the seven health boards do not have a board-level lead or a champion for children's services, and this certainly reduces opportunities for children to have their voice heard and their human rights respected in organisational decision making.

From our own collective experience, we are aware that there do need to be better corporate-wide strategies that demonstrate commitment to children's human rights; mandatory children's rights training for all health professionals and managers; performance indicators on children's rights; proofing of budgets, policies and guidelines for compliance with children's human rights; children being better included in clinical decision making and the monitoring and evaluation of service delivery; better complaints systems for children; co-ordination across services generally; and the consistent monitoring of health authorities' commitment to children's human rights.

To touch on the second part of your question, it is very positive that there are children's rights charters, but what we need to see is that they are better embedded and better understood. So, it's all very well having this kind of pledge and having the charters stuck across hospitals and various services, but what needs to happen is that officials really need to know how to translate that into practice, and so do the health professionals as well. There's a lack of understanding there at the moment, but we need to move on from that, and it's very positive that we are seeing this incremental step, where people and health boards are starting to take the UNCRC into account in decision making.

Thank you. Can you expand on your evidence that Welsh Government should urgently develop a time-bound action plan and dedicate funding to the maximum extent of available resources to the development of paediatric research, medicine development and the academic paediatric workforce in Wales? And an obvious question, I guess: why hasn't this been done already?


I'll respond to this one. Though we've kind of acknowledged there is a strong commitment to human rights in Wales, looking at the current situation with regard to paediatric research funding in Wales, there's probably a suggestion that the accountability framework hasn't been followed. We are in very uncertain times, and I think what we haven't really touched upon is the importance of both European and global networks of paediatric research. One country can never develop medicines for children—it has to be global. We're part of a European network—the European regulation is what has actually stimulated paediatric research. Prior to the European regulation coming through, there was a lot more off-licence and off-label use of paediatric medicines. The 10-year report into the regulation has shown that that has decreased the amount of off-label and off-licence use. There has been an increase in medicines developed for children. It's not perfect, it's still being driven by the needs of the adult market. So, there are issues, but within Wales, we're contributing to that kind of discrimination against children, I suppose, in that we're not actually offering them, even at this level, the opportunities that adults are offered to be part of clinical trials.

Phil and I have both been heavily involved in the opening of the children's research unit, which I think Lynne has been to see. It opened in 2017 and we can say that it has increased. We've got a lot more children involved, and from across south Wales as well—it's not just Cardiff children; there are children from Newport, from other health boards—so there is definitely an increase. However, we need some kind of sustained funding. Cardiff and Vale are the only health board at the moment that's actually invested in this, and we do need sustainable funding in order to continue this and to grow.

We know that Welsh Government is committed to prudent healthcare—no more, no less, no harm. We can't actually say to children that we can offer that as a service; we don't have the robust basis for the treatments that we're giving them in the same way as adults do. Ninety per cent of the drugs in neonates used are off-label or off-licence. You have to to manipulate—. There's an excellent video that was developed for GRiP—Global Research in Paediatrics—a few years ago that will show you the level of manipulation that takes place when you're trying to give a drug to a neonate. You know, slicing a suppository in half and hoping for the best. So, I think it's about committing, in Wales, to developing, to helping these global networks to develop these critical age-appropriate medicines. And that needs funding, that needs the ABF to be right, and it means infrastructure funding to be right as well.

We recently submitted an application for infrastructure funding. We weren't successful. We've received minimal feedback and we do not know if the UNCRC was considered.

To Welsh Government. We've got some evidence here, if you'd like that.

And if I could just add to that—I think we would just like the committee's help in terms of the scrutiny of the decision making around that infrastructure fund allocation. Was due regard taken into consideration? Because we have tried to ask the question, but we're still waiting for answers.

Thank you. That would be very interesting for us to have that as a concrete example, really. Yes.

Thank you. And we were just thinking of working with other public bodies because we are taking children from other health boards in terms of our trials as well—so, working across the board. We ask, really, for a commitment to funding this action plan. We did put together a comprehensive plan that we think might work, and we're happy to share that with you confidentially as well.

And just to add to this as well, in terms of just to be aware of the overarching picture that child health research funding has now decreased year on year since 2012. So, we're just concerned that children are being neglected

And in terms of clinical academia as well, there's been a huge decrease in the investment in clinical academics. We've had the first appointment in about 13 years at Cardiff University, but that was a real fight to get that post. And without those relationships, it's quite difficult. We could be leading. Rhian, Phil and I are involved in a global project at the moment and we've been accepted on the fact that we are coming at this from a rights-based approach. We would like to ask children to come up with a charter on involvement in clinical research, but we can't do that without the support and without the funding, really.


Yes, and the Harvard institution are just very interested in terms of the angle, in terms of the convention on the rights of the child. So, they're really interested in us sharing our learning from Wales.

Thank you. You say that,

'Children’s human rights should never be an afterthought but a primary consideration and central to any decision making and actions taken regarding research and development and access to medicines for children in Wales.'

I suppose you've touched on this already, really, but I'm going to ask the question again so that we get it firmly on record. To what extent are children’s rights being taken into account when decisions are made?


So, to put meat on the bones, we've talked about things a lot. So, for example, one of the issues we've had is, in Wales, because we're stuck in this poverty cycle of research, we don't have an early cancer medicines unit. So, there are regulatory requirements around having, for children, a unit that can deliver first-time-in-children medicines. So, we've had a number of children for whom conventional therapy has not worked and they've relapsed. At that point, conventional therapy is futile and there's not really any point—they will then die. So, with those children, drugs that are developed off the back of adult medicines are actually then being trialled on children. We can't do that in Wales. So, we've had to try and send them out to other centres that are these early cancer medicines centres, and that's at around the time when the child has relapsed and they're not well, the family has to deal with this and off they have to go at a particularly vulnerable time in their lives, really.

The issue has been that being in these trials actually requires a lot of input. You don't just turn up on the day, half an hour and then you're out. It takes days of various tests, having it, drug levels being taken at set time points after you have the drug, side-effects being looked for, all sorts of things, lots of investigations, and realistically you need to live near the institution where you're having it for a period of time, for a few weeks when you're on these things, and possibly longer. Hopefully, if they're successful, for a lot longer because then you can carry on. So, the issue is that we don't have it in Wales, we have to turn people out, but the funding—. When they're on a trial, the drugs are paid for so the Welsh NHS doesn't have to pay for that. But if you have to live in west London for two months next to Great Ormond Street, that costs a lot of money, that is not cheap, and so they can't afford it and it's prohibitive. So, they've not been able to do that.

About three years ago, we had a run of them and we had three, and they tried to get on these early phase trials and, actually, the families just couldn't afford it, so they didn't get on them. And then subsequent to that, people have attempted it and hit the same barrier. So, actually, we've had about 10 children in the subsequent two or three years who were then given palliative intent chemotherapy, who've then subsequently died. But they didn't have the opportunity or the choice to get enrolled in these studies around those periods of time.

So, we're doing things about it. There's a charity called LATCH, which is the Welsh children's cancer charity; we're trying to set up an ECMC centre and we're working with Cardiff University. Cardiff University has got an adult ECMC centre, a virtual centre around Velindre and Cardiff, and we're trying to join that as a paediatric centre—

Off the back of charitable funding.

Off the back of charitable funding. You know, this is not something that's being paid for by anyone else. So, it's basically charity. It's LATCH deciding—they can see what the children go through and what the families go through and actually want to do something about it.

And, is this different to adults? Sorry to ask the question.

Yes. In adult centres, and again, a contrary example, Velindre does adult cancer studies, Cardiff does adult cancer studies, Swansea does adult cancer studies, so in terms of adult cancers, there are multiple different sites in south Wales that I'm aware of that actually enrol and give novel agents to adults.


Okay, thank you. We've got some more questions now on the way resources are allocated, and whether children's rights are taken into account, from Siân Gwenllian.

Iawn. Rydych chi'n dadlau, felly, dwi'n credu, y bore yma y dylai Llywodraeth Cymru adolygu ei chyllideb iechyd a'i pholisïau er mwyn cydymffurfio a rhoi sylw dyledus i egwyddorion a darpariaethau'r Mesur Hawliau Plant a Phobl Ifanc (Cymru) drwy gynnal asesiad effaith ar hawliau plant a chyhoeddi'r canfyddiadau. Dwi'n credu eich bod chi'n dadlau o wneud hynny, felly, byddai disgwyl i arian lifo yn fwy neilltuol tuag at wasanaethau iechyd plant. Dyna'r ddadl rydych chi'n rhoi gerbron, dwi'n credu. Oes yna enghreifftiau yn rhyngwladol lle mae hyn wedi digwydd yn llwyddiannus?

Fine. You are arguing, therefore, I believe, this morning that the Welsh Government should review its health budget and its health policies in order to comply with giving due regard to the principles and provisions of the Rights of Children and Young People (Wales) Measure by putting in place a child rights impact assessment and publishing the findings. I believe that you're arguing that, by doing that, there would be an expectation that funding would flow more specifically towards children's health services. That's the argument that you're putting forward, I believe. Are there examples internationally where this has taken place successfully?

I'm happy to take that question. I just want to reinforce first of all that a detailed CRIA of the health budget would demonstrate how it's having a positive or a negative impact on children's human rights in health and other interrelated human rights. I also want to reinforce, again on the record, that it's a specific requirement of the UN Committee on the Rights of the Child. It's outlined in general comment no. 5 on the general measures of implementation; general comment no. 14 on best interests; it's outlined in general comment no. 15 on the right to health; and most recently in general comment no. 19 on public budgeting for the realisation of children's rights.

So, as the other institutions giving evidence today have all expressed, it is inadequate that budgetary decisions are not being consistently assessed for compliance with the UNCRC and it's a failure of the children's scheme. So I do really feel that—well, not a failure. It should be happening as a part of the children's scheme, sorry, to correct that statement.

As per our written evidence, we're concerned that there's still a lack of visibility of children in the Welsh Government health and research budget. We would urge much more detailed analysis on specific areas of spend, in particular in relation to health research. Although requested from the Health and Care Research Wales support centre, the figure for what is currently spent by Welsh Government on paediatric research is not forthcoming, so the lack of transparency in public expenditure on paediatric research means that it's currently not possible to tell, without more detailed analysis, whether the Welsh Government is using sufficient levels of expenditure to fulfil children's rights to the highest attainable standard of health.

Under article 4 of the convention on the rights of the child, Ministers have a clear obligation to demonstrate whether they're fulfilling children's rights to health to the maximum extent of available resources. We believe that that transparent evidence on spending on children in relation to health research is an essential tool in both meeting this obligation and evidencing how planned spending and indeed spending cuts are impacting on the outcomes for children and young people in the enjoyment of their rights.

The health research budget and indeed all Welsh Government budgets that impact on children should be consistently assessed for their impact on children and young people and their human rights. It allows the impact to be predicted, monitored and, if necessary, avoided or  mitigated, or indeed strengthened. We are concerned at how consistently this is happening under the new strategic impact assessment process. At the moment, we do not know what the proportion of spending is on children in the health research budget as compared to the adult population, and if children are being discriminated against or not in health budget decision making.

So, I want to use another example to elucidate this a little bit, okay? So, in the 2014 inquiry into CAMHS by your own committee, Welsh Government statistics referenced within the report show that £82.75 was spent per head on general mental illness as compared to only £13.94 per head on child and adolescent mental health. So when health policy is tracked over time, there is a trend of underspending on the child population as compared to the adult population. So we'd like a detailed proof of the health research budget, but we believe it would be good practice to proof the overall health budget to demonstrate the proportion of expenditure on children, and only with this information can we hope to understand whether the Minister for Health and Social Services is indeed fulfilling his commitments under the Measure. And if the Minister did become aware from his analysis that that there was, for example, a significant underspend on children, we would hope that the findings of the assessment would result in changes in policy and future spending decisions.

With regard to what other countries are doing, in research into how far other countries are implementing a children's human rights approach to health services, there is limited evidence to suggest that, as yet, other countries are successfully using children's rights impact assessments to inform their budgets in health settings, right at that level. However, there is evidence of other countries monitoring and proofing national health budgets. And until recently, we were regarded as exemplars in Wales in terms of our children's budgeting, and I think we need to go back to that and make sure it is out there, accessible and transparent to the public and to bodies that are trying to work out what exactly is going on. I can share with you the link to Unicef's 2007 global study on what other countries are doing, but that's more to do with national budgeting. 


I was just going to ask: how would it look if the spending decisions became transparent in the health sector, from a children's services point of view? How would that actually look?

Phil, do you want to take that on, or would you prefer to—?

In the context of research here, which is what we're talking about, I don't know—. In terms of intervention studies, so doing things to children, in terms of 'Here's something, an intervention, that we want to do', Cardiff's the only centre doing intervention studies in Wales. There's no other centre at all doing intervention studies. Now, to some extent, Cardiff takes everyone with renal, paediatric intensive care, very premature babies—it has to take them from everywhere else anyway, and they get centralised. So people in other postcodes are having access to research, but in terms of expenditure within their own health boards on intervention studies, I'd say it's very low. I don't think there are any studies. 

It's not being tracked. It's very difficult to access the evidence. So, when we're asking for it, it's just very difficult. I suppose that's what we mean by a lack of transparency.

So, the opposite of that is to have clear pathways within budgets that show a breakdown.

Yes, exactly. And demonstrate it. Yes, definitely. And I think, actually, if you look to the global study, they give fantastic methodological examples of how that can be done. So it'd be good.

No, totally. And it is broken down in there, and we had done it historically here, to some degree, in a slightly rudimentary way, in Wales as well. But, perhaps, post this meeting, we can share further evidence in that area. 

Basically it's a 'yes' or a 'no', as we're up against the time. You said that children's budgeting has gone backwards, so can you just, really, really quickly explain why we've gone backwards on that? 

I think that we did have some really good work happening, but just to narrow down my concern, I'm just concerned about what is happening now with regard to the strategic assessment—

—process and whether—. Because I think it just seems to be more difficult to access this information in terms of the proportion of expenditure on children across budgets. 

So it's that transparency. And I don't know where it's happening. I would love the assistance of this committee to find out further what is actually happening in this area, because it's making it more difficult for us, as external organisations, to hold public bodies to account, and that's a very important part of this whole process, I hope you do accept. 

Thank you. Absolutely, we do. Suzy on the public sector duty.

Just moving on from that, of course, apart from two pieces of legislation, public bodies don't have the same due regard responsibility as Government and this Assembly. You say that you want that pushed down, and I agree with you, but what will that look like, bearing in mind it doesn't seem to be transparent or visible at Government level? Is this going to make things worse or better in terms of transparency?

I suppose, yes, we're seeing the flaws, aren't we, at Government level. I think what needs to happen right across the board is it happens and it needs to be happening better in terms of officials' and civil servants' understanding of how to implement the due regard duty. There does need to be more capacity and resource actually dedicated to that. So we're obviously seeing a bit of shrinking backwards of what's been going on, and I think that the other people who gave evidence earlier suggested that what is happening is that there's no longer mandatory training at Welsh Government level in terms of actually delivering due regard. So, then we've got our own case study. So, we've got officials who are suddenly saying, 'Oh my god, we have to do a CRIA on the activity-based funding model. Oh, right, okay.' They didn't actually say that, but the way their faces looked was, 'Well, what is that? How do we do it? Oh my gosh—we've got to go back now and ask for advice'. So, really, it should be at the fingertips of senior civil servants' knowledge base in terms of, 'Well, what does due regard mean and how do I apply it?' So, we have—. I was co-author of the research that informed the children's commissioner's 'The Right Way: A Children’s Rights Approach in Wales'. It's an excellent piece of work in terms of helping public bodies actually think about how should they translate a children's human rights approach into practice. So, that can be utilised, but we do need this legal requirement that is entrenched right across public bodies, because there needs to be consistency.

At the moment, you're seeing a lack of consistency. You've got Welsh Government and then you've got public bodies. Let's have it right across the board and actually resource—provide the resources for people to actually understand what is a children's human rights approach, understand the convention—'What does it mean to me to actually make children more visible in my health budget decision making? How can I make sure that children are being listened to and heard better in my clinical decision-making processes?'—you know, all these different things. There need to be corporate-wide strategies in terms of how to implement it, and there needs to be senior level buy-in. Without the legal requirement, we will not get senior level buy-in, so that is why we need the public sector duty in terms of public bodies across Wales.  


Sorry. [Laughter.] I feel very strongly about it. 

No, no. And I agree. But, just on the back of that, every local authority and health board, which, I suppose, are the two most relevant ones for this conversation, will have a different idea about how to embed a due-regard duty at different points in any decision-making process. I'm thinking of budgeting particularly. Is that the sort of guidance you would expect to come from Welsh Government about the evidence that needs to be provided to show that you have complied with the due-regard duty? 

I think there definitely needs to be evidence and support. So, in my research into a children's human rights approach to health services, for instance, you've got the UN health rapporteur who's saying, 'Okay, hang on a minute everybody, people need to understand these enforceable human rights', but what we're struggling with is that they get the general comments. You know what the general comments are in terms of the UN committee's jurisprudence. A health professional doesn't know how to suddenly jump from that legalistic provision to applying it to their area of work. So, what we need is capacity, resource and support and direction from Welsh Government on how to do this. You've already had experience over the last seven years of doing it—the Welsh Government doing it in terms of a model. It's working to some degree. Let's build on that. Let's take that approach and take it out, and transplant it with public bodies. This is—what's the word—cutting-edge stuff globally. It is fantastic. We are in a nation that wants to put the human rights of children first, as much as possible, and I'm really excited about that. So, let's seize this opportunity now and move forward with it.

'Show us your workings'? Yes, definitely, and I also would like you to, if possible, give consideration to Scotland's Children Bill. I'm not sure if they touched on it in the earlier meeting as well, in terms of the fact that there is a draft Bill for direct incorporation now on the table in Scotland. People talk of this race to the top in terms of, 'Scotland's doing well, Wales is doing well—let's look to what they're doing in terms of their model of incorporation; we could take a step further forward now'. I like the balanced approach that they have there. They've got the due-regard model, but they're balancing it with a compliance duty, which is similar to the Human Rights Act 1998. And I've got the explanatory notes and the draft Bill that we can share with you post that meeting for further discussion on that as well. 

Okay, that would be very—. Well, I think that would be helpful, wouldn't it? Can I ask my last question now? 

If there was one thing that this committee could do for you, or the Welsh Government could do for you in getting this right, what would it be? You've got a minute. 

Phil, would you like to take that? [Laughter.] 

So, I think we'd like to ensure that children—

—that children with significant health needs are not really neglected and that, actually, the Measure is used in a way to help allocate resource to them in an appropriate way. 

Okay. Wow, you did that in 10 seconds. Thank you very much indeed. 

Okay. Well, can I thank you very much for your attendance? That was an absolutely fascinating session and really useful for the committee to have such palpable examples of how the Measure should be making a difference to children, but isn't. So, thank you very much for sharing that with us; it was very powerful and really, really helpful. You will be sent a transcript to check for accuracy following the meeting, but thank you again, all of you, for attending.

Gohiriwyd y cyfarfod rhwng 11:10 ac 11:21.

The meeting adjourned between 11:10 and 11:21.

4. Ymchwiliad i Hawliau Plant yng Nghymru: Sesiwn Dystiolaeth 3
4. Inquiry into Children's Rights in Wales: Evidence Session 3

Okay. Can I welcome Members back then for our third evidence session this morning, which is with the Equality and Human Rights Commission? I'd like to welcome Hannah Wharf, who is the principal of the Equality and Human Rights Commission, and Melissa Wood, who is a senior associate at the Equality and Human Rights Commission. Thank you both for attending. If it's okay, we'll go straight into questions. I've got some questions from Rhianon Passmore. 

Thank you. Welcome. So, as Wales has been groundbreaking and led the way, in your opinion—according to some of your written evidence anyway—do you feel that the Measure has made any difference with regard to the way children's rights are considered by policy makers, and how do you feel that's been implemented across Government?

First of all, thank you for inviting us to give evidence today. As you may well know, we commissioned a piece of research into the impact of the children's Measure, and that was carried out by the Wales Observatory on the Human Rights of Children and Young People, and Children in Wales, and that happened between January and March 2018. So, much of our evidence is based on that research—to do with your question. So, in that research, they found that the Measure had had a positive influence on the way policy is undertaken by the Welsh Government. They found more attention being given to the convention and policy processes, and the fact that the Measure has established a new and important framework for policy on children in Wales.

However, they did find that there was a difference of opinion about the impact on the quality of that policy decision making. So, for example, to give a good example of where it has had an impact is on the Well-being of Future Generations (Wales) Act 2015, and there is a case study within our research that showed how active consideration of the due-regard duty was made. In terms of children's rights impact assessments—CRIAs—many stakeholders expressed concerns about the quality of consideration given to children's rights and policy development generally across the Welsh Government. For example, some comments made were that policy development is often patchy and inconsistent, and that the Measure is an innovation in human rights and children's rights implementation, but the impact of this law has been very uneven so far. There was also a comment that CRIA practice is not consistent, which undermines the impact of the due-regard duty. So, another example of some of the comments that people made about that was that CRIAs have become more common, although nowhere near universal, since the Measure came into force. However, the variable quality of the CRIAs and their variable application leaves a lot to be desired. 

So, in your opinion, with regard to the barriers that have led to the Measure not having that same influence across Welsh Government department decision making, what are those barriers—you've sort of highlighted them—and how can they be overcome?

So, I think it's important to note that this Measure was a stepping stone towards incorporation, and in no way counts as full incorporation in terms of legal enforceability of child rights in Wales. So, you can see roots springing up of where policy has changed, and the prioritisation of children's rights has happened. But you can also see a lack of legal teeth in the Measure, and inconsistency of CRIAs. And the thing that I think needs to be strengthened—we think it needs to strengthened and reviewed—is the actual mechanism of child rights incorporation. We can celebrate the success of the stepping stones to getting to where we've got to in terms of incorporation through the child rights Measure, but that's one step on a journey for full incorporation. So, I think it's important to look at the barriers in the actual legal framework as well.


So, could you articulate again—we've rehearsed some of this earlier, but can you articulate those barriers in terms of successfully implementing?

Patchy and inconsistent CRIA use in the Welsh Government. There's been no judicial review, and a lack of legal redress. That's due, in some ways, to the actual make-up of the legislation itself, and a lack of legal knowledge, and a lack of public debate and accountability—that framework's there, but it's not being used as an accountability framework.

And there's also opportunity for policy advocacy within the National Assembly. So there are lots of examples within the research where the due regard is not being used by AMs to hold other AMs to account. So, it's not that—. That knowledge is not throughout the Assembly either, or across Welsh Government.

Thank you. With regard to how that can be overcome, though, you would feel that duty to be applied. How can we overcome some of those issues?