Item 6 today is the debate on petition P-06-1249, 'Provide a clinical pathway, medical care, and specialists for people with Tourette’s syndrome in Wales'. I call on the Chair of the Petitions Committee to move the motion—Jack Sargeant. 

Motion NDM8008 Jack Sargeant

Notes the petition P-06-1249 'Provide a clinical pathway, medical care, and specialists for people with Tourette's syndrome in Wales' which received 10,393 signatures.

Motion moved.

Diolch yn fawr, Deputy Presiding Officer. I think we're getting quite used to this this afternoon. 

On behalf of the Petitions Committee, I'm pleased to have the opportunity to introduce this debate.

Deputy Presiding Officer, the petition we are discussing today is titled 'Provide a clinical pathway, medical care, and specialists for people with Tourette's syndrome in Wales'. This petition has received 10,393 signatures. It states that Tourette’s affects one in 100 children, that it is not a rare condition and that, in Wales, there is one specialist, who doesn't see children. The petition calls for

'a proper, clear, clinical pathway and access to specialist provision and medical care for people with Tourette’s syndrome in Wales.'

As I stand here today, Deputy Presiding Officer, we are 10 days into Tourette's Awareness Month, an attempt to raise awareness of Tourette's syndrome and the difficulties it can cause for one in 100 children and adults. I would at this point like to thank the Business Committee for scheduling this debate so promptly, so that we can contribute to the awareness raising.

Deputy Presiding Officer, the petition highlights the difficulties sufferers can face in Wales. Low levels of awareness mean it can be hard to get diagnosed, a lack of specialist care means it can be hard to get fast access to the support that can make life a little bit easier, and there can be enormous inconsistencies in the treatments, based on in which part you live in Wales. We can do better, and we must do better.

Now, of course, I do welcome the action taken by campaigners to raise awareness, including those celebrities like Billy Eilish and our very own Hefin David, who just recently brought his family's experience with autism into the Chamber, and the link that has there too. But, just like Billy Eilish and Hefin David, the petitioner, Helen Reeves-Graham, what they really want to see is not just raising awareness, they want to see real change, Deputy Presiding Officer—change in their communities and real change in their lives and the lives of the people they love. If I may use Helen's own words, and I quote:

'Ideally we would love to see a specialist Tourettes clinic within Wales that would offer a complete care package from therapy, access to medications, help with sleep, behaviour difficulties, mobility difficulties, managing pain and help with other co morbidities. Help and support needs to be available in ALL parts of Wales. The people that would be providing these services need to be fully trained. Access to a specialist in WALES is absolutely needed.'

And I know the Deputy Minister is committed to improving assessment and support services for all neurodevelopmental conditions, including Tourette's syndrome, and that she has met the petitioner and others to hear directly from patients and their families about the difficulties they face.

Listening to those with lived experience is crucial if we are to truly understand the needs and the type of support they require. A constituent has recently contacted my office and shared her family's distress due to the lack of support services. She described her eight-year-old son and how Tourette's impacts his life. She says that her son doesn't swear, but his condition is far more challenging and, in her words, Presiding Officer, and I quote:

'He suffers with extreme anxiety and has intrusive thoughts. He had talked about how he wants to die. He tells me it's his tics saying this in his head and he feels that he wants to get a Knife to stab himself.'

At the time, her son was seven, and the school immediately referred to child and adolescent mental health services, but they were told there would be a very long wait. Presiding Officer, her son suffers with violent tics in his head, face and jaw. His eyes burn, he bangs his head, he has poor motor skills, he can just about write, he has very poor control over his bowels and experiences a great deal of pain in his body from sudden involuntary movements, amongst a range of other challenges. And despite all of his suffering, the family have been unable to access specialist services, apart from the constant support of the school special educational needs co-ordinator. She describes a very bleak picture of how our health system is failing her son and fears for his future. She calls for all professionals to be better educated about this crippling condition. She also calls for suitable help, support and a clear medical pathway, from the GP upwards. This is what her son and others with Tourette’s deserve—the right to be understood, to be respected and to receive the care and support they so desperately need.

Presiding Officer, the results of the demand and capacity review of all-age neurodevelopmental services, which was due to report at the end of March, will, of course, inform the approach taken by the Welsh Government in the coming years and months. And I would be grateful, in responding to this debate, if the Minister can share some of her thoughts.

Presiding Officer, I do look forward to hearing from other Members this afternoon and, of course, hearing from the Deputy Minister. Diolch yn fawr.

It gives me great pleasure to speak in support of this particular petition. Now, the organiser of this petition is Helen Reeves-Graham, who is a constituent of mine and is a formidable campaigner for improving services for people with Tourette's syndrome in Wales, and I'm proud to have people like Helen living in my constituency.

As the Chair of the Petitions Committee said, it's thought that around one in 100 children in Wales are living with Tourette's syndrome, and the condition shows itself differently in different people. One person may have involuntary head jerks, another may have vocal tics, and so there's no one-size-fits-all snapshot of how Tourette's syndrome looks. As we know, symptoms can range from mild to severe, and, in the case of physical tics, these symptoms can sometimes be painful. Now, living with a complex condition like Tourette's can be overwhelming, particularly for children, and so it's absolutely crucial that there is access to specialist care within Wales. Some parents are turning to the internet to help find information on how best to support their children with Tourette's, and the reliability of some of that information is, of course, questionable. But it really shouldn't have come to that. There should be support services in Wales available from the onset of diagnosis, and it's really worrying to read reports of children and their families feeling alone after being diagnosed, and we have to take action now to ensure that this does not continue.

Dirprwy Lywydd, we know that more and more children across the UK are being diagnosed with tics and Tourette's, as experts at Great Ormond Street Hospital in London have recorded a rise in the number of children and teenagers experiencing tic symptoms and tic attacks since the beginning of the pandemic. Now, before the COVID pandemic, the Great Ormond Street Hospital would normally receive four to six referrals a year, but, by January 2021, they received three to four referrals per week. And so, as the number of referrals grows, the demand for more support and understanding does too, and so it's vital that the Welsh Government intervenes and ensures that children have access to vital physical, mental and emotional support here in Wales. Not accessing the appropriate medical care and support can lead to long-term mental health problems, and, as the petitioner has rightly highlighted, people with Tourette's syndrome can have difficulties with anxiety, sleep, rage and social isolation. Therefore I sincerely hope that the Welsh Government will reflect on the very serious impact that not having support and services is having on children living with Tourette's syndrome in Wales and their families.

Now, as the chair of the Petitions Committee has already said, the Welsh Government is working to improve assessment and support services for all neurodevelopmental conditions, and that work will be informed by the outcomes of a demand and capacity review. I hope, in responding to this afternoon's debate, the Deputy Minister will give us an update on that specific work. Nevertheless, I'm really pleased to hear that the Deputy Minister has met with Helen Reeves-Graham to discuss what the Welsh Government can do better to support families here in Wales, and, whilst that engagement is extremely positive, time is of the essence for children living with Tourette's, and the longer that they go without support and services, the more serious the impact is on their lives. That's why we need to see action now, and why we need to see Tourette's being prioritised and not simply grouped with other neurodevelopmental conditions. A one-size-fits-all approach just won't adequately address the needs of people with Tourette's. Instead, the Welsh Government must get on with the job of establishing a specialist centre for people living with Tourette's syndrome in Wales so that they can access support, therapy and, indeed, the care that they need.

People living with Tourette's in Wales, and in particular children, shouldn't have to travel across the border to access specialist treatments, and, at the very least, the Welsh Government should commit to providing more aftercare and support post diagnosis. The Welsh Government has said that regional partnership boards are rolling out a new framework to improve access to the right support, and I hope that, in responding to this afternoon's debate, the Deputy Minister will tell us more about how that work is also progressing.

So, in closing, Dirprwy Lywydd, can I pay tribute to the hard work and determination of Helen Reeves-Graham in circulating this petition and ensuring that Tourette's syndrome is on the Welsh political agenda? Your voice, and the voice of families across Wales living with Tourette's syndrome, has been heard. Therefore, Dirprwy Lywydd, we have an opportunity to get this right, and I sincerely hope the Welsh Government will work to ensure that children living in Wales with Tourette's will be able to access specialist services in Wales sooner rather than later. Thank you.

Diolch, Dirprwy Lywydd, and firstly I'd like to thank Helen for submitting this petition. What it calls for is exactly right—Tourette's is overlooked by many and is viewed by most as a condition that means that you just swear uncontrollably, and I like many others am guilty of previously thinking that, but there's a lot more to it. It's a neurological condition that can be quite painful. That's why it's important that diagnosis is given and that medical care and support follows. But in Wales there currently is no clear clinical pathway to assess specialist provision and care, especially for children. There is only one Wales-based consultant specialising in Tourette's, but only in adults. This is very problematic. The tics that people develop are often most severe during childhood and adolescence, and, as a result, can impact on what we all recognise and know is a critical period in human development and socialisation.

The reality is that delaying until adulthood to receive a diagnosis can cause a whole load of issues. Studies have shown that receiving a diagnosis of Tourette's can help individuals to understand their own behaviours and help them to explain their behaviours to others. Some report that without their diagnosis they felt more at risk of developing metal health problems, and it has been proven that mental health issues amongst those with Tourette's are more likely to develop. Alongside mental health issues, the majority of respondents to the Tourette's syndrome impact survey study, which included both children and adults, reported at least one tic that caused physical pain and damage. That's why access to occupational therapy that can address pain management, as well as speech difficulties and sensory issues, is vital. As well as opening access to services and support, receiving a diagnosis allows people as well to meet others with Tourette's, therefore helping them to develop a sense of community and belonging that they might not have otherwise.

Going back to an earlier point I made, there's a lot more to Tourette's than we might initially think. There's a lot to be said about education, as well as how we talk about it and address the stigma surrounding it. I think this petition has already played a part in doing that, and Helen should take pride in that. So, again, thank you to Helen for highlighting this issue with the committee, and I look forward to seeing how the Government responds to the petition and what it calls for. Diolch.

I had the pleasure, in advance of my short debate on autism, ADHD and Tourette's two weeks ago, of speaking to Helen Reeves-Graham on the phone and hearing her story personally, and it demonstrates the difficulty that exists in this community. And particularly one of the things I mentioned in my debate was feeling like a pinball. As a parent of someone with autism, as Jack has kindly mentioned—although he did also call me a celebrity, which I don't think I agree with—the challenge of being a parent of a child with autism is strong, and you feel like a pinball bouncing between different specialists. And the Royal College of Psychiatrists have told us that 20 per cent of people with TS also have ASD. That leaves 80 per cent who don't have ASD and therefore don't have access to that autism pathway.

And I'll come back to that in a second, but I've had an e-mail from Nicola Hall, who is a constituent, who demonstrates exactly what we mean by this pinball effect. So, this is about her son.

'We first noticed Aled's verbal tics in February 2020. He was four years old at the time. We reported this to the GP, they confirmed this was common and would probably go away on its own. "Come back after 12 months if they're still present", they said. Over the 12 months, his tics became worse, were constantly changing and now included motor tics. We went back to the GP, we were referred to the SPACE panel. They referred us to early years. I pleaded with SPACE for a CAMHS referral. They refused. After becoming part of the South Wales Tic and Tourette's Support Page, talking to other families and researching, we knew CAMHS was where we needed to be seen. Early years could not help us and referred us back to SPACE. SPACE referred us to PCMH, where we were assessed and taken on with the promise of six virtual sessions with a psychiatric nurse. At session three, we were informed by the nurse there was nothing more that could be done and she would refer us to CAMHS. We are now on the waiting list for CAMHS. The frustration, as I'm sure you can see, is that we asked to go there initially and this time has been wasted.'

Now, I've benefited from going to an educational psychologist, school, speech and language support and various different places, but each time the waiting list increases and the end outcome becomes further away, which I mentioned to the Minister yesterday. In the case of Tourette's, where less is known about that condition, that journey becomes even more complicated, and sometimes some of the places you're referred to may not be the right place in the first instance. And one of the things that Nicola said to me is that parents know best. Listen to parents first, because they spend the most time with their children and theirs are the opinions that need to be listened to first and foremost. Now, there are waiting delays in the system, we know that, but they are being exacerbated by that pinball effect.

And that is when you can get treatment, because I've had other correspondence from Byron Thomas about his son. His son was 13 before he had treatment, when they knew that there was an issue when he was five years old.

And I mentioned autism, and I said that people on the autism pathway have a clearer pathway, and that is undoubtedly the case, but I've had a letter from Sally Smith, who says that she keeps a diary of her son's tics and symptoms, went exactly on the same path, bouncing like a pinball, like Nicola, and it took one and a half years for her son to be diagnosed after that period of time. But what she said to me as well is that the only support he receives is because of his autism; Tourette's support is non-existent. So, there are even issues for those of us who are parents of children with autism, that that pathway still is very confused and unclear. 

And finally, I do want to mention that I've had from Jane Hutt—. As she's a Minister, she can't speak in this debate, but she's sent me the details of her constituent whose son, Ben, has issues. Jane has passed it to the Minister, but I promised I would raise this in the debate as well. And, Minister, there we go, that's the e-mail itself. There we are. And I think it's really important that the Deputy Minister hears these stories. And I'd say that we have the right person in this Deputy Minister, because I have been in meetings with parents with the Deputy Minister, and witnessed her taking action. She really does want to resolve these problems. There are many complex parts, complex moving parts, to this, but there are things that can be done. And just to finish, the most important thing I think we can do is listen to parents and those experiencing Tourette's.

I, too, would like to congratulate Helen Reeves-Graham for raising this issue, because without that, we would not have discussed it. And I'm very grateful to Diana Beljaars, who is an academic expert at Swansea University, who has done research on this subject, not least because a close family member of hers has Tourette's, so, obviously, that has prompted her interest in this. And from talking to her, I learnt a great deal about this. I always knew about the shouting out and swearing, but nothing about the other ways in which it presents itself just with tics. So, children can be told to stop moving, keep still in the classroom, and can then be singled out for behaviour that they actually can't do anything about, because they don't know why they do that.

My understanding is it's a combination of genetic and environmental factors that cause Tourette's, so there's clearly a need for a lot more research. Is there a link, for example, with air pollution? There's so much we are beginning to understand about the impact of air pollution on different aspects of people's health.

Clearly, it's important that we have patient-focused services. We've got to be listening to the people who are caring for these children, and taking seriously what they're reporting. Now, parenting doesn't come with instructions, so a first-time parent might not realise that there was anything out of the ordinary about the particular presentation of their child with Tourette's. But what Diana pointed out to me was that people are often told that most children don't need treatment, so it's sort of 'Go away' time. 'Yes, we've diagnosed you, you've got Tourette's, but you're not going to get anything off us', and that, clearly, has to stop.

So, I think one of the most important things that we can all do something about is combat the discrimination that people with Tourette's can experience, both in the classroom and in the workplace, because people can lose their jobs as a result of the employer simply not understanding the unusual movements that somebody might be displaying are something that (a) they can't do anything about, but (b) that doesn't stop them being a perfectly brilliant whatever.

And there are two really good examples I learnt about, which are really interesting, because I had assumed that if you've got Tourette's, you can't possibly be a surgeon. Not true. There's apparently a really famous neurosurgeon, Peter Hollenbeck, who functions in the United States, and who's won all sorts of awards, including the top teacher award in Purdue University from the College of Science, and several other accolades for his work on the nervous system.

And the second person who is perhaps more accessible to most people is Tim Howard, who used to play as a goalie for Everton and Manchester United, and then went on to be one of the goalkeepers for Memphis 901 FC in the United States. He's widely considered to be one of the greatest goalkeepers in American footballing history.

So, clearly, these are two people who are doing jobs where hand-eye co-ordination is absolutely crucial, and the reason why they are able to excel at their chosen profession is because, apparently, when you're concentrating on something—and, clearly, when you're in front of the goal, you're concentrating—you don't have Tourette's, whereas if you're asleep you can have the tics or whatever the presenting factors are of Tourette's. All of which I find really interesting, but also a really great way of saying that if your child has Tourette's, that does not mean to say they can't excel in the career of their choice.

Diolch to Helen Reeves-Graham for starting this extremely important petition. As Jack has stated, we know that Tourette's affects one in 100 children, so to see over 10,000 signatures in support of providing a clinical pathway, medical care and specialists for people with Tourette's syndrome in Wales comes as no surprise. The Royal College of Psychiatrists say that up to 85 per cent of people with Tourette's syndrome will also experience co-occurring conditions, including attention deficit hyperactivity disorder, obsessive compulsive disorder and autism spectrum disorder.

During my time in education, I worked with a number of children who were diagnosed, and, in some cases, undiagnosed, with Tourette's syndrome. I witnessed first-hand how living with Tourette's impacts on the person and family dealing with this condition. It was distressing to see the struggle of a small child on a daily basis fighting with this condition, and it was just as distressing to hear the parents beg for help and support.

The everyday scenarios that we take for granted as fairly easy tasks can be very difficult for children suffering with Tourette's—mingling with peers in a class and during break, completing schoolwork. Children with Tourette's are expected to catch the school bus with other children with just one carer, when most parents and guardians will tell you that children with Tourette's will need a carer just for them. It can be mentally and physically exhausting for all involved.

The lack of awareness in Wales of Tourette's syndrome even makes things like going shopping or walking through the park a daunting experience, knowing that eyes will likely be following you. We need to make sure that people with Tourette's in Wales feel supported, not ridiculed. The added pressures of searching constantly for help and support, not being able to access the correct medical care and facilities, can lead to long-term mental health problems. Tourette's isn't just swearing. It can be exhausting. Through involuntary movement, which is painful and debilitating, it can lead to difficulties with sleeping, anxiety, social isolation and bouts of rage. It's a complex condition, and should be treated as such.

We need to do better at, firstly, diagnosing the condition, raising awareness of the condition, and ensuring that the correct treatment and support is available for individuals, families and carers to access. I wholeheartedly support this petition and will work to make sure that those suffering with Tourette's in Wales feel supported. 

I call on the Deputy Minister for Social Services, Julie Morgan.

Diolch, and I welcome this debate this afternoon and thank Members for their comments. As Jack Sargeant said in his introduction, today is timely as we are currently in the middle of Tourette's Awareness Month, and the greater awareness we can get, the better.

I've recently met, last week in fact, with Helen and with other parents of children with tic disorders and Tourette's syndrome, and this was the second time I'd met this group of parents. In these meetings, parents told me about the struggles they've experienced trying to access support for their children, and Members today have described some of those struggles that people have had to go through. And the issues they raised, together with their strength and determination, are absolutely at the forefront of my mind as we strive to make positive changes.

As, I think, Hefin said, 'Listen to parents first,' and that's what I'm doing, and I think nobody can tell us better than parents themselves what the situation is. And I've listened carefully to what Members have said about the individual experiences of their constituents, and of course I've read the letter that Hefin gave me about Ben from the Vale of Glamorgan, in Jane Hutt's constituency.

So, firstly, I must say that I'm committed to making sure that all neurodiverse children, young people and adults, along with their parents and carers, have access to the services and the care that they need. A sustainable service is built on good foundations and the work that's been done to deliver the statutory code of practice on the delivery of autism services has given us a solid base to make real change in improving services for all neurodevelopmental conditions, including Tourette's syndrome. I think services for autism have definitely improved, but we've got to make sure that the other conditions now are improved as well.

When we were talking to stakeholders when we were developing the autism code, we listened when we were told that despite the progress made in autism services, many people with other neurodevelopmental conditions and their families and carers are still struggling to access the support they need, even though their needs were often similar or were co-occuring with autism, as has already been mentioned here this afternoon. And these messages were echoed in my conversations with parents of children with Tourette's syndrome. So, that's why we are widening our approach from an autism focus to seeking improvements across neurodevelopmental conditions, such as Tourette's syndrome and also ADHD. We have a dedicated policy team, working across health and social care, linking closely with departments across Welsh Government, such as education. Our national autism team is expanding its remit and its expertise to provide advice across neurodevelopmental conditions.

Members will be aware, and I know it's been mentioned several times this afternoon, that we commissioned a demand and capacity review of neurodevelopmental services last year to better understand the increased waiting times and the pressures on the neurodevelopmental service and to try to identify options for improvement. After receiving a presentation on its findings, I'm currently considering the final report from the review. The final report will be published shortly and my intention is to make an announcement about the immediate, medium and long-term actions we'll be taking to support improvement. This will include urgent action to reduce the pressures on assessment services and to put in place early help and support for families who need help now. I've been so struck in my discussions with the families about how desperately they need help and how difficult it has been for them to access that support when they realised that there were issues that had to be dealt with. The third sector will have a key role in providing support to families and we've started working very closely with organisations such as Tourettes Action UK on this. 

In conclusion, I can assure Members that we're committed to delivering a sustainable neurodevelopmental service for Wales that will essentially be co-designed with individuals and families with lived experience of these conditions, including Tourette's syndrome. I will be making an announcement about our proposals as soon as I'm able to do so.

I call on Jack Sargeant to reply to the debate.

Diolch yn fawr, Deputy Presiding Officer. If I can extend my thanks to all Members, both of the committee and Members of the Senedd, for their contributions, and of course to the Minister, not only for her response, but for her commitment to supporting those families and those who suffer with neurodevelopmental conditions.

We've heard, haven't we, from across the Chamber, the reason why we need to provide a clinical pathway—that medical care and those specialists for people with Tourette's syndrome—and why it's so essential to improve people's quality of life, whether it was from Helen Reeves-Graham, the petitioner and my constituent, or Jane Hutt's constituent, Ben. As Hefin David has rightly pointed out in his contributions, this is crucial for the lives of those people and their families. Hefin described the pinball effect and one of his constituents described that too.

So, I think we await, Minister, with interest your announcement, but we are grateful for your support in this. You have, as you said, improved autism services, but there is still a long way to go. And rightly so, we should be listening, not only to the 10,000 people who signed this petition or supported and shared this petition, but those who haven't who also suffer from neurodevelopmental conditions. So, can I offer my thanks again to all Members, to everyone who signed and supported this petition, but mostly to Helen Reeves-Graham—Paul Davies's constituent—and those who've supported her to bring this to the floor of their Parliament and to get the Minister's response? And of course, we do await with great interest the work that you are doing. Diolch.

The proposal is to note the petition. Does any Member object? I don't see an objection, and therefore the motion is agreed in accordance with Standing Order 12.36.

Motion agreed in accordance with Standing Order 12.36.