Official Report: Minutes of Evidence

The Chairperson (Ms Kimmins): You are all very welcome. Thank you for coming along today. In attendance we have Maurice Leeson, programme manager for partnerships, emotional health and well-being, child and adult mental health services (CAMHS) and disability; Martina McCafferty, mental health lead; and Paul Millar, social care commissioning lead for emotional health and CAMHS. Thank you for your time today. We will have 45 minutes for the session. We have received a written briefing, but I will ask you to make some brief opening remarks, after which I will open up the session to members.

Mr Maurice Leeson (Department of Health): Thank you very much for the opportunity to come here today. As you said, we provided a written briefing to the Committee. Hopefully, it will have addressed the issues that you had raised with us. As we indicated in the paper, there is currently no commissioned service for adult or child attention deficit hyperactivity disorder. Provision has, therefore, grown organically across the trusts in response to population demand and expertise in teams. We provided a breakdown of how that is distributed across Northern Ireland.

Although that has ensured that there is some level of provision, the Department is aware that it has also led to inconsistencies between trusts, and an important feature of our work has been to address that. That includes pathways and gaps between what can be provided in trusts and the level of demand. We have completed a review of paediatric ADHD pathways across the region, engaging with all the trusts. Access to integrated assessment and support pathways for people with neurodevelopmental presentations such as ADHD is being considered as part of our children's emotional health and well-being framework, and we will say a bit more about that. The aim of the framework is to standardise services across the region and to address, in part, some of the inconsistencies that I referred to. Services for ADHD will require investment across the health and education sectors. In particular, investment in psychosocial interventions and, for children requiring medication, the implementation of shared care deadlines will require the support of primary care colleagues.

In the paper, we say a bit about prevalence. I will touch on that briefly to note that, if all children who could benefit from diagnosis and treatment were to receive those, of the current child population, around 4,000 per trust area would transition to an adult service each year over the next 10 years. If all adults who could benefit from diagnosis and treatment were able to access those, up to 5,000 people per trust would receive treatment. It is reasonable to expect that referrals will continue to rise over the next decade, with a referral rate of somewhere between 300 and 450 people per trust.

In the paper, we say a bit about private diagnosis, because we have had a number of questions about it. Its basis was set out in a June 2021 communication from the old Health and Social Care Board (HSCB) to GPs and private assessment providers. In the paper, as you will see, we highlighted the fact that the correspondence highlights the duty of referrers and assessment centres to advise patients that they will remain in the private health system, including for prescriptions and shared care provision, until such time as they are seen in Health and Social Care (HSC); that that will happen in chronological order; and that private diagnosis will not affect their position on HSC waiting lists. You may want to talk to us a bit more about that. There are no shared care arrangements between private assessment providers and the HSC. Anyone with a private diagnosis will access shared care arrangements following an HSC appointment.

I turn now to our next steps. In 2022, we had an initial paper from consultants in the South Eastern Trust and the Northern Trust, and we see that as a basis for our work on the way forward. It is a helpful starting point, in that it seeks to establish future demand and the scope of any future adult ADHD service, but we need to do further analysis of the paper. The trusts are working closely with us and are committed to developing innovative, cost-effective, co-produced, quality and evidence-based services that can meet the needs of patients with ADHD. That work will include the establishment of new clinical pathways. We are aware that the demand is rising. The decision to commission ADHD services in the future will be based on an assessment of the level of demand for services and in the context of future budget availability.

On 13 February 2024, we met to discuss next steps. We looked at commissioning research, and that process is under way, including pathways and options for implementation. We are undertaking preliminary scoping work for the proposed research. We plan to have a further meeting involving a wider group of organisations, including CAMHS, adult policy, which includes forensics and addictions, the strategic planning and performance group (SPPG) and the Public Health Agency (PHA), to discuss and agree a way forward. We are planning a workshop with trusts to discuss the position across the region and how best to deal with it, pending the possible commissioning of any future services. In children's services, we are doing ongoing work with our public heath colleagues to develop regionally defined neurodevelopmental pathways that will allow earlier intervention, because we are conscious that people and families who are waiting for assessments have immediate needs that have to be addressed whilst they wait for formal assessment. ASD and ADHD diagnostic pathways will be addressed through our children's framework, which will be on the agenda to be signed off by our joint planning and commissioning team with the PHA.

Thank you, Chair, for the opportunity to make a few opening remarks.

The Chairperson (Ms Kimmins): Thanks very much for that and for the briefing paper. I have just a couple of questions.

A lot of that will be difficult. You outlined that there is no commissioned service at the minute. Things are being done to try to plan, but that is difficult to do in the absence of funding. As I said, we met ADD-NI over the summer. It does really good work in supporting individuals and families. You mentioned working collaboratively with the Department of Education, but one thing that has come up with me is that not having a diagnosis has an implication. A lot of children and young people end up in the justice system because of their impulsivity, which is characteristic of their condition, and that has ramifications for those young people throughout their lives. Is there any other work across more Departments, including Justice, to look at that? Potentially, we need to explore that further.

Mr Leeson: Absolutely. Paul, do you want to say a bit about that?

Mr Paul Millar (Department of Health): We are working with the Department of Justice and the Youth Justice Agency to co-locate a mental health practitioner in each of their area offices. That is part funded — it is a partnership between the health and social care trusts and the Youth Justice Agency. It is in four of the five trusts at the moment, and we are working with the Northern Trust to roll that out. That is about mental health, but, obviously, there is a big crossover between mental health and developmental disorders. That is about raising awareness, actually engaging with those young people and making sure that their needs are met. We know who is on the waiting lists. That is another hidden population whose needs we need to be able to map and scope. That is a partnership between Health and the Department of Justice.

The Chairperson (Ms Kimmins): OK. Thank you for that, Paul. That is good to know. Obviously, there is probably a lot of work that needs to happen. It is a chicken-and-egg situation.

Mr Millar: It is in a pilot phase at the moment. It started in the Southern Trust five years ago, and we have worked with the other trusts to roll it out. It went live in the Belfast Trust and the South Eastern Trust before the start of this financial year — before April — and we are working with the Northern Trust to reach full roll-out there. We are looking to engage Queen's in some evaluation of that.

The Chairperson (Ms Kimmins): Thank you. Maurice, you mentioned some of the workshops and things that will be happening. You listed the different representative bodies, and our representatives will be part of those discussions. Is the community and voluntary sector engaged in that process, particularly organisations such as ADD-NI, which is working on the front line with a lot of people who are affected? It is important that those groups have a seat at the table, although, with some of the higher-level stuff, that might not be appropriate. However, I think that they need to be involved: they are on the ground dealing with it and have a lot of people with lived experience. It would help to inform where we go.

Mr Leeson: Absolutely, Chair. I totally agree with that. Until this date, there has been engagement between particular officials and the voluntary and community sector, but I think that you are alluding to a more formal engagement process with the whole sector, and, yes, that needs to happen.

The Chairperson (Ms Kimmins): OK. That is good. I know that organisations like that will have access to small amounts of funding for their services through the core grant programme, and we need to be cognisant that they are very limited but are trying to do a huge amount of work.

Ms Martina McCafferty (Department of Health): The Minister and I met ADD-NI a number of weeks ago to discuss the same issue, and we were chatting about the scoping and research that will be commissioned into the lifespan of ADHD. The Minister reached out to ADD-NI to become involved when we do some initial scoping. It is really important for the community and voluntary sector and people with lived experience to be involved in any commissioned service going forward. That was a very positive meeting.

The Chairperson (Ms Kimmins): That is good to hear, Martina. Thank you for that. I could probably ask more questions, but I will open it up to members. A number of them have indicated that they want to come in. Danny Donnelly is first.

Mr Donnelly: Thanks very much for that. My internet was kicking in and out, but I heard your presentation. I have some questions. I have had a lot of interest in this issue locally. The figure of 2·5% to 4% is cited in the paper. Where does that figure come from?

Mr Leeson: That is an estimated figure that was developed by officials.

Mr Donnelly: Is that UK officials or officials here?

Mr Leeson: That is our analysis of here.

Mr Donnelly: OK. What is it based on?

Mr Leeson: It is based on work that has been done by other officials.

Mr Donnelly: OK. Are you able to share with us where that came from?

Mr Leeson: Yes. If the Committee is happy, I will send further information about the working-out of that.

Mr Donnelly: Yes, that would be very useful. Even if you apply that figure, further on in the report, you say that 4,000 children will have a diagnosis moving into adult services and that 5,000 adults per trust are, effectively, not receiving the treatment that they need.

That is 4,000 children and 5,000 adults per trust who are not receiving the treatment that they need, and those figures increase by 300 to 450 a year. A shocking number of people across Northern Ireland are not being treated for this condition, going by the estimates that you have given us. Thousands and thousands of people here are not being diagnosed with or treated for the condition.

I have had meetings with ADD-NI, and my colleague Peter McReynolds, who is chair of the all-party group on ADHD, has met groups and families across Northern Ireland and developed a petition calling for the commissioning of ADHD services. The report is clear about there being no real service in Northern Ireland. There are huge inconsistencies across Northern Ireland, despite the small number of services available. It is very much the definition of a postcode lottery for the thousands of people who are affected. That is particularly the case in the Western Trust, where there are, I think, no services at all.

This is one of the main points that I wanted to ask about. You referred to the first line of treatment for children being early intervention and prevention services, but, if they are on a waiting list that is years long, how do you have those two things meet? If we want to intervene early and have prevention services, rather than using medication, how can people be expected to wait for that service?

Mr Leeson: We have established a system of family support hubs across Northern Ireland to provide early intervention. They are networks of voluntary, community and statutory organisations that provide early intervention support. Families who require support are referred to the hubs, and the hubs identify a support service that is suited to their needs. We have that embryonic support service, and we also have a series of locality planning groups across Northern Ireland that work with local communities on particular pressure points in order to see how organisations and services can better work together. We have a system in place on which we feel we can build.

I acknowledge that the biggest issue, which the Chair referred to, is that the success of the family support hubs is built on the community and voluntary sector, which is under considerable funding pressure at the moment. We find, however, that that system works well for linking families to support and is valued by families and providers. I take your point that the direct service has grown organically. Our work certainly backs up what you said about provision not being consistent across trusts and there being significant gaps in certain areas.

Mr Millar: Chair, I would like to say something about the research. The best data in the UK is from 'The Lancet' and NICE. It gives a childhood incidence rate of 5% and an adult incidence rate of 3% to 4%. On that basis, it estimates a total of 2·6 million people in the UK with ADHD. We can share that data with you. A research survey of 10,438 children between the ages of five and 15 in the UK found that 3·62% of boys and 0·85% of girls had ADHD. We got that range from the 'Journal of Attention Disorders'.

Mr Donnelly: That is fantastic. Thank you very much. I have one last comment. Many of the people who come into my constituency office who suspect that they have ADHD or have a confirmed diagnosis of ADHD have issues with medication. That may be an issue with being prescribed a medication, or they may have a prescription but be faced with a shortage of medication. What is your contingency plan for when there is a shortage of a particular type of medication such as methylphenidate? I think that there have been a couple of shortages this year.

Mr Millar: That shortage in medication is due to a supply issue for the worldwide population. Our colleagues in primary care, who deal with medication, would be best placed to answer that. We could certainly come back on that, if that would be useful. It is not our area of expertise.

Mr Donnelly: So that I am clear, are you saying that the Department has no role in that?

Mr Millar: No. Sorry, I am not saying that. We are aware of the supply issue: it is a worldwide issue for the manufacturers, due to the increased demand. That was cited in the research paper. We can come back to the Committee after talking to our primary care colleagues who deal with pharmacy matters.

Mr Leeson: We will look at medication as part of our work. In case you are concerned about that, I assure you that we will do so, because it is all part of the system that we have to develop.

Mr Donnelly: That is fantastic. Thank you very much.

Mrs Dodds: Thank you for the presentation. ADHD is one area of health provision in which we have practically no formal service at all. I have had contact with some of my constituents, and it really is sad to know that, no matter what I do, there is no route for them. Your paper, if I read it correctly, says:

in the Southern Trust. I am particularly interested in adult ADHD services. The Southern Trust simply says, "There is no commissioned service", shuts up shop, and that is it. That is literally the attitude that I have had from the Southern Health and Social Care Trust. That one sentence typifies the response to the many letters that I have written about constituents on this particular issue. "Sorry, no can do. Thank you very much", is very typical of what I have got back.

Your figures for the potential number of cases in Northern Ireland indicate that there may be over 5,000 adults or young adults who have ADHD in the Southern Trust. Surely, from the Department of Health's point of view, it is unsustainable that we are not quickly developing a commissioned service to deal with that.

Ms McCafferty: Thank you for your comments, Diane. We are fully aware that there are inconsistencies across all trusts in Northern Ireland. There is no commissioned service for adults, and we have been dealing with queries and questions from constituents and the Committee. We are developing the terms of reference, which are in final draft, for the scoping research paper, and those are based on the very demand that you are talking about. The research paper that our colleagues in the Assembly helpfully developed will also inform that. We are very aware of the demand. The scoping paper will look at the levels of demand and the evidence base as well as what the service's budgetary requirements and staffing profile might look like. We are fully aware that there is a long waiting list and no commissioned service.

Mrs Dodds: What you are describing is a step forward from when I first started asking about this. It is a step forward, but I am looking at the Southern Trust, and your paper simply has one sentence describing what is available there:

If I were a young adult in that area — in Banbridge, Portadown, Lurgan or anywhere in between, or even across Northern Ireland — it would be a pretty depressing outlook. I know that you have started the process, but it is a very long process. It will not happen quickly. That is pretty depressing for young adults who need to get on with their lives but cannot.

Another very specific question arose from constituency enquiries. A young adult, who may live in the Southern Trust area, gets an ADHD diagnosis privately and is told that they need medication. They are given a prescription for that medication to take to their GP and then be dispensed.

They have spent the money and gone through all the procedures. When that young adult goes back to the GP, they are told "Sorry, you require monitoring while on this medication, and there is no service to monitor you, so I will not prescribe the medication". Where does that young adult go?

Ms McCafferty: That is also my understanding: there are no shared care arrangements between Health and Social Care and private providers in Northern Ireland. ADHD —.

Mrs Dodds: Sorry, but I want to go back on that. Your paper says that, in some cases, you acknowledge the veracity of the private diagnosis, but GPs have no responsibility to prescribe and monitor.

Ms McCafferty: Yes. According to our primary care colleagues, GPs have clinical and legal responsibility for the management of medications that they give out, and they must be assured of the diagnosis and that it meets NICE guidance. If it meets NICE guidance, which can be determined only by a Health and Social Care consultant, they are not obliged to provide shared care arrangements. That guidance was given by the Department in June 2021. That is our understanding.

Mrs Dodds: I ask you to go and look at that again, because the people affected are in desperation, as is the case with everything in the health service. There are people who believe that they have never received an ADHD diagnosis. They are over the age of 18, and, particularly in my trust area, there is nowhere for them to go, but the trust has not acknowledged that or even set up pilot projects in that regard. That is really regrettable and difficult for people to hear. It is regrettable that that is what the people who are listening in today are hearing.

Have you any sense of what a commissioned service for children and adults would cost or look like?

Ms McCafferty: That is part of the work that is being done in relation to the research commissioning paper. May I confirm that the shared care arrangements will also be included in the scope of that work, which is imminent?

Mrs Dodds: This is my final question, Chair. You talk about the family hubs. I have seen how they operate: they are very, very good, but they are not everywhere. This is a theme that I keep coming back to in relation to health in Northern Ireland: there are many inequalities — inequalities of income and social and economic inequalities — but there are structural inequalities in the health service. One trust can say, "I see a need, and, even though it isn't commissioned, I'm going to try to do something about it", as is evidenced in your paper. Other trusts simply say, "No. Not doing it". Those kinds of structural inequalities need to be addressed. We are a population of 1·8 million, and someone not being able to access services that are less than 20 miles away because they are not in that trust area is an untenable position. Do you not think so?

Mr Leeson: I will respond to what you said about the family support hubs. We have full coverage in Northern Ireland. We have 29 hubs and cover all of Northern Ireland. You may well be reflecting on the fact that, sometimes, the services that the hubs are able to call upon are, probably, not as great in some areas as they are in others. I recognise that.

I hope that you see that the issue is a priority for us, notwithstanding the very difficult situation that there is at the moment, which we acknowledge. We have identified a road forward on which we want to develop a service that meets the needs of the child and adult population. We have begun that work. While it is frustrating, in the sense that you are looking forward and saying, "That's going to take a long time", we feel, nonetheless, that we have to start somewhere. We have to get this going, bring together the best evidence and build on what is working well, because, across that diversity, some things are working very well.

That is what we are setting out for the future.

Mrs Dodds: I accept that. I am relieved to hear that the Minister reached out to make contact and talk to people. This is a huge area. If your figures are right, upwards of 50,000 people in Northern Ireland could be affected by this condition. However, there are no adult services in some trusts, and very limited adult services and non-commissioned services in others. The children's services are patchy as well. It is not tenable to have so many people in such a difficult situation. ADHD will affect every part of their lives. It is not just the medical issue, and so many people in that situation is not tenable. I am heartened to hear that the Minister reached out, and heartened to hear what you are doing, but it is such a long process. If I sound frustrated, I am, because I talk to people in my constituency who have this.

Ms McCafferty: It is important to add that the mental health strategy is one way of the Minister trying to reach out in developing a consistent and standardised service for all citizens in Northern Ireland. That requires a significant amount of funding but it is about equity and consistency of approach no matter where you live. That is the vision of the strategy, as we know.

Mr Leeson: We do hear clearly your frustrations about the patchwork approach.

Miss McAllister: Thank you for your answers, and apologies that I am not with you in person. A lot of my questions have already been answered, so I am going to focus on collaboration. Some of it may not be in your area or part of your workload, but it is important to raise. Like many of the members, I have continual engagement with people in my community, especially parents trying to access ADHD services for their children. However, is not just the health system that they are coming up against when fighting for their children's rights and access to healthcare but the education system. It is important that Health and Education work together. The education system as it stands does not fit to a child who has any additional needs. There is a lot of basically, "Come, sit at this table, hold the pencil and work for x number of hours per day". We know that there are children who have ADHD who simply cannot control themselves when it comes to impulsivity. Their attention is somewhat different, but we do not really tailor to every child. This is not just an Education matter; it is a Health matter.

Also, when we are moving to commission adult services, which absolutely needs to be done, can we look at things to make sure that we get better in the holistic approach to children's services. That is not just about Health — it is a whole-society approach, and Education is a big part of that. Does much work go on across Departments on best practice and what best suits the needs of children who have ADHD or ASD, and sometimes both?

Mr Leeson: On the overall approach, a number of structures have been established to get better collaboration between Health and Education. I think that, when I was here previously, we talked about the joint Health and Education oversight group that was set up to do just as you say, namely to look at the issues that exist, particularly special educational needs, where Health and Education need to work better together. That overarching approach has been taken. When we are working to develop the emotional health and well-being framework, Education will be a key partner for us, because you are quite right in that we need both Departments, and their organisations that deliver services need to work closely together if we are to make a success of this.

Miss McAllister: Has that come up in the Health and Education joint forum? Has there been a conversation about how best to support children with ADHD?

Mr Millar: I cannot speak about that oversight group, as I am not on it. That takes place with policy teams at director level. Even from an operational perspective, however, Health is engaged in the emotional health and well-being framework. Each trust has emotional well-being teams in schools that sit under the CAMHS structures. That is very much about helping teachers to understand children's presenting needs, linking those schools into community resources and building capacity and understanding. That covers neurodiversity. I agree with you, Nuala, about the environment and making adaptations for those children who struggle in school. It is a bit easier in primary schools, where certain teachers adopt that and have strategies in place. We need to do more through joint working.

To go back to an earlier point about collaboration more widely with the third sector, some of you who sit on other Committees may be aware that Health led on some engagements around the i-THRIVE model and framework, which was very much cross-sector across the region. We are reviewing the outcome of that. That is looking at children's needs and who is best placed to meet those needs at that point in time, so that there is not a number of organisations delivering the same type of intervention when others are better placed to address that need and then, if that need is not met, making sure that more specialist help is available. It is targeted support, and that is something that we need to continue to do more of, particularly with finite resources. The role of the third sector is key and critical to that.

Miss McAllister: I agree absolutely that it is. I agree with you about ensuring that teachers are exposed to adaptations that can be made. It is unfortunate that, too often, we try to bend the child to suit the needs of the classroom rather than making sure that the classroom is inclusive of all children. That is the way that it should be, because the ways in which children present these days are much more complex, whether in mainstream or special needs settings.

There is quite a significant role for Health, because the more pressure that is put on individual children, the more symptoms appear, whether it is anxiety, not attending school, or needing adaptations to their medication. That falls on the health service too. I do not know what role you could have, but if that discussion has not been brought up at director level under the scrutiny framework that you talked about at the start — I am not sure of its correct name — that may be something that you could relay back. It is so important that this is not just an Education approach but involves Health.

Mr Leeson: That is helpful. That group in particular is there to address any significant blockages where things cannot be worked out at another level. That should be where we go when we say, "We have tried to work together, but it is not working and now we need a much more formal approach". That is there to make sure that collaboration works.

Miss McAllister: Has there been any work to see what is working for children who are neurodiverse and in the education system but who rely on the health system for their support? Has there been an examination of what is effective and what is helping? How do you know what is helping families and what works?

Mr Leeson: In Education?

Miss McAllister: In either Department, but most importantly, probably, in Health. Has there been an analysis?

Mr Leeson: Certainly, in our work going forward, we want to build our new approach on that best evidence. That is something that we have identified that we will be doing.

Miss McAllister: That is great to hear.

Mr Leeson: We are very much saying that, going forward, we need to draw on best evidence and lived experience, as we mentioned earlier, when we engage with other organisations, the community and voluntary sector and families, to help us in those deliberations. I totally agree with you: we will have to be very clearly focused on that.

Miss McAllister: There are children's organisations that you can speak to directly and can help you to speak directly with young people. Families are fantastic, but there are more and more young people who are neurodiverse and who are more than willing and able to speak up for themselves. They just need their own agency and stakeholders to help them to do that. Thank you very much for coming today.

Mrs Dillon: Some of the points that I was going to raise have been covered, but, on the back of a couple of the points that have been made, I support much of what Diane said about the Southern Trust. I have concerns, obviously, because that falls in my area.

We are missing a lot of things across the board, but one thing that I am very conscious of is that we have referred to the third sector quite a bit in this conversation: the family support hubs, Nuala's points about the third sector helping you, and referring people into the third sector for services in the community. That is all great, but we are not funding it, so it will not be there, and what will we do then? It is not, obviously, an issue for you — I thank you for your presentation — but it needs to be brought back to the Minister. If we do not fund the third sector to pick up on those gaps, it will be gone, and we will still not have the services in our health service. That is a real concern going forward, because the third sector picks up a lot of the slack; we know that. I appreciate that that is not an issue for you, but I want it brought back to the Minister. It will not come as any surprise to him. I am sure that he has heard it before, and I hope that we —.

Ms McCafferty: Linda, may I comment on that?

Mrs Dillon: Yes, Martina.

Ms McCafferty: It is relevant to the mental health strategy. Work is ongoing on action 17, which is about the capacity of the voluntary and community sector to support the delivery of the strategy and develop and improve services. That ongoing work will look at capability and the workforce planning that is required. That is being led by the Minister, so he is fully aware of the important role that the voluntary and community sector plays. The strategy talks about working in partnership with the voluntary and community sector, but I agree that money is required for the voluntary sector to do that.

Mrs Dillon: I appreciate that he appreciates everything that voluntary and community sector organisations do, but they cannot do it unless they are funded, so saying, "It is brilliant, I love it, and I am scoping everything that you can do to help me, but I am giving you absolutely no money to do it", is not sustainable. We just need to make that point and keep making it. I understand the financial constraints that we all work under.

I have a couple of wee questions. Thank you, Paul, Maurice and Martina, for your presentation. The difference between boys and girls is not massive, but it is significant enough. Is that real, or is it because, as we know, ADHD can often present differently in different genders? Girls tend to have more of the attention deficit, which, honestly, means sitting in class and spacing out. If you are not disrupting the class, will you get the attention that you need for your attention deficit? As we have heard a number of times today, the child who is impulsive or who acts out and disrupts the class gets the attention. Does that account for any of the difference, or are you content that the figures that we have are probably fairly accurate?

Mr Millar: From looking at the research, Linda, on that gender split of roughly 4:1 boys and girls, I can tell you that, among clinicians and across the area, there is active discussion. There is a sense that girls overshadow, so they compensate for that. Going back to the prevalence rate, getting an exact figure across the globe — it is 5% of children; it is generally the same. Professionals draw the line. It is difficult because different countries, organisations and professionals, when they begin to measure the impairment to diagnose it as ADHD, draw the line in different places. It is an emerging evidence base. NHS England has set up a task force to look at that. It is not unique or specific to Northern Ireland, so we need to look across jurisdictions. The Assembly Research and Information Service briefing paper looked across the UK and Republic of Ireland, but there is a new and emerging need, and more research needs to be done. It goes back to the point of what the prevalence is and how best to plan for services.

Mrs Dillon: I appreciate that. That feeds into the reason that I wanted to raise that and into Nuala's point that we need to be able to present the evidence to the education sector. Some people would say, for example, that the model of the 40-minute class was not a bad thing, because that is likely to be the maximum period for which a child with an attention deficit is able to hold attention. It feeds into so many other areas of their lives, such as school and the working environment in the next stage of life or whatever you decide to do when you leave school. It is a whole other stage that we need to consider. I appreciate the answers today. Thank you.

Ms Flynn: Thanks for your comments so far. First, you mentioned the scoping exercise that is under way and that the findings are imminent. The briefing paper mentions commissioning research and analysis and that it:

Then it says:

I just want to get it clear. The work that is being carried out that is almost concluded — is that the research or the preliminary scoping work to undertake the proposed research?

Ms McCafferty: It is the draft terms of reference that are being developed with officials from policy, the SPPG, the PHA and the trusts in relation to what we need to do for the research commissioned paper. It will be about the budget, staffing profile and evidence base. The actual research commissioned paper has not commenced yet, but it is due to commence in the very near future.

Ms Flynn: If there was any kind of nailed-down timeline, it would be helpful if that could be shared with the Committee. I am worried about what the research paper around the commissioning is going to entail around the stats and the level of need. In the presentation, you explained that we are talking about 4,000 children and 5,000 adults per trust, and you have figures to show that it is increasing by 300 to 450 per year per trust. To me, those stats, numbers and figures are there. The point that Diane and others made is that we are already dealing with a lot of children and adults on waiting lists, who do not have access to these services.

The paper also states:

Have we not already got that? It worries me, and I would take more comfort if the Committee knew that the Department and the Minister were already coming out publicly with a statement. I know you need to be very thorough about the evidence base for what a commissioned service will look like; I get all that. However, given the evidence we have at present, your presentation today and the written briefing paper, we should already have a commitment from the Minister and the Department that the need is there. How do we move this forward to implement what a commissioned service will look like? We are past the point of, "Do we need one? Is one required? Is the level of need there?", because we all know that it is.

Mr Leeson: We are absolutely clear that a service is needed. The research is more to be clear that, because the timeline is involved, we are definitely commissioning the right service in the right way to meet the needs that we have.

Ms Flynn: So a decision had been made that a commissioned service is required and is going to be put in place?

Mr Leeson: Absolutely. The figures suggest that we need to do something with the population that we are facing.

Ms McCafferty: The early paper that was developed by our two consultant colleagues in the South Eastern Trust and the Northern Trust, as Maurice indicated at the outset, was very helpful, but it only looked at the medical impact, assessment and diagnosis. It did not look at the overall bio/psycho/social requirements that we have all expressed today about the impact of ADHD on a young person and an adult. The research and analysis needs to do that, and it needs to look at the evidence base on what a multidisciplinary team looks like. There is the NICE guidance to indicate that. The research paper that Sinead has developed is also very helpful. We can also look to our colleagues in Scotland, Wales, England and the Republic of Ireland to see what that looks like. There is no question that there is an overwhelming level of demand for a service. We will take that back, Órlaithí.

Ms Flynn: That is great. There are thousands of people who are already on waiting lists or are undiagnosed. We all have them in our constituencies, but I have no doubt that we have them in our own families. That is how far-reaching the issue is. I think that a lot of people will take comfort in the fact that our Minister is stating, "Look, the wheels are in motion as to how we get a commissioned service". Many people are frustrated about being on very long waiting lists. In some cases, they do not even have a service to be on a waiting list for.

The briefing paper mentions that conversations are taking place alongside CAMHS and addictions and forensics, the PHA and the SPPG. At what level are those conversations taking place? What information or feedback is coming out of those meetings and discussions? I have no doubt — I am sure that you are the same in the Department — that there is an overlap between some of the children and then adults who end up in child and adolescent mental health services, and in and out of our addiction services, and people who have gone undiagnosed with ADHD. Are you having that conversation about trying to undertake some of that evidence gathering? That is really important.

Ms McCafferty: Paul, do you want to comment on the CAMHS piece?

Mr Millar: Yes. I have responsibility for CAMHS, ADHD and ASD, so it is about linking those up. I regularly meet the CAMHS heads of service in the trusts, as well as ASD and ADHD, around future need and comorbid presentations, where young people are acutely unwell with other conditions that are underlying and exacerbating their mental ill health. It is about making sure that that is recognised in a holistic way and treated.

Those who are on medication, because of the nature of it — it is an amber medication — need to be robustly monitored. It goes back to building a service that has enough capacity. If somebody is diagnosed at the age of six and they are going to be on medication for 12 years until they age out of children's services at 18, that is 24 reviews for that person. That is some of the modelling that needs to be done. It is about looking at pathways and offers of support. It is very much joined up: I have the brief for that, and Martina and I work across.

Ms McCafferty: On your comment about forensics and addictions, I work in a team that has all of that portfolio, so my colleagues and I will be very much involved in the commissioned research. They have briefs for addictions, healthcare in prison and forensics.

Ms Flynn: That is really good to know. Thanks very much.

Mr Leeson: Órlaithí, if your concern was about the level of discussion, we can absolutely and totally assure you that it is at a very senior level. It is a very serious topic.

Ms Flynn: That is great to know. Thanks very much.

I will finish with a comment. You mentioned the issue of the workforce. Linda said that, right across the health service, workforce is going to be an issue in how we tackle any of the problems that the health service is facing. I spoke to the Belfast Trust a number of months ago about its waiting lists for diagnosis. It is next to impossible to get on top of the waiting lists, because the infrastructure and, most importantly, the workforce is not there to try to deal with the backlog. I am sure that you are aware of that. Hopefully, some solutions will come from the research commissioning paper that you are having completed.

The Chairperson (Ms Kimmins): Diane, you want to come in very quickly before we finish.

Mrs Dodds: I probably should know this, but I do not: what adult ADHD services are commissioned in other parts of the United Kingdom and Ireland?

Ms McCafferty: I will have to come back to you on that one, Diane. I have just received the research paper, so I will come back to you on that one, if that is OK.

Mrs Dodds: It would be useful to know so that we can get some information or look at what is happening there.

Ms McCafferty: I think it is very timely as regards the work that is being scoped.

The Chairperson (Ms Kimmins): Sorry, Alan, I did not realise you were waiting. Apologies.

Mr Chambers: This is just a quick question. I apologise for missing the start of your presentation. You may already have covered the query that I have. When was this condition first recognised and identified as a medical condition that needed medical intervention? How long has it been kicking about in medical circles?

Ms McCafferty: The first NICE guidance came out in 2008.

Mr Chambers: It was first identified in 2008?

Mr Millar: That was the first NICE guidance.

Ms McCafferty: That was the first NICE guidance in looking at the evidence base for the condition.

Mr Chambers: It has obviously been around forever.

Mr Millar: Our understanding has changed, with changes in diagnostic criteria over time — I am sorry; it is a very technical answer — such as updates in diagnostic manuals like the 'The Diagnostic and Statistical Manual of Mental Disorders' and 'International Classification of Diseases'. It was more from presentations at clinics, where clinicians found that there are key traits. I am just looking, because there was a section on the epidemiology of this and how it has grown. Certainly, there is much more societal awareness of neurodiversity. There is less of a stigma. Even when adults are bringing in their children, they are saying, "Actually, I have those traits", and that is driving some of the curiosity to ask, "Do I have it, as much for myself as opposed to my child?". Growing societal awareness has certainly increased awareness.

Going back to the point about NICE, it has formally recognised ADHD and put it down for assessment. Is that a sufficient answer?

Mr Chambers: It is a bit disappointing that it has been identified officially since 2008 and we are where we are today, talking about no services having been commissioned in that period. It is a long time for what would appear to be a lot of inactivity around something that we know about, so that is disappointing. Thank you.

The Chairperson (Ms Kimmins): Thank you, all. I am sure that, as some of this progresses, we will probably have more engagement with you on it. As Órlaithí said, the fact that there is a really strong focus on it is heartening. I know, certainly from people who, as an adult, have received a diagnosis of autism, just getting that diagnosis can be life-changing, because it helps people to make sense of what they have been dealing with for a long time with no real understanding or explanation for it. It is so important, and, for many of us around this table, we probably do not understand because we are not living it, so it is good. It is a priority for us as a Committee. We identified, early on, that we wanted to see good progress on this, so we really appreciate the work that is happening, and, hopefully, we can see more happening in the future. Thank you all for your time.

Mr Leeson: Thank you very much. We certainly understand your frustration and your support. We will come back to you on the figures and the firmer timelines for the research to give you a much better idea of when you can expect to see activity, and then some examples around the adult services in other jurisdictions.

The Chairperson (Ms Kimmins): That is great. Thanks very much.