Thank you very much, Deputy Presiding Officer, for calling me to move this very important motion, which is proposed also by Caroline Jones, Rhun ap Iorwerth, Dai Lloyd and Julie Morgan. I’m also very grateful to those Members who have supported this motion.

I’d like to open this debate with the story of a young girl from Haverfordwest. Her name is Aimee, and some of you may have met her during the drop-in event that was organised on awareness-raising of juvenile idiopathic arthritis only two weeks ago in the Pierhead building. I’m pleased to say I think nearly half of Assembly Members attended that event. This personal account has been given by Aimee’s father, Darren:

Aimee was diagnosed with juvenile idiopathic arthritis just before her second birthday and it took us about six months to get a diagnosis. The local doctors didn’t think it was arthritis but I don’t think they knew much about arthritis in children. It took a lot of people by surprise. Aimee has to go to hospital every month—this means travelling to Cardiff, which is two hours away, a round trip of 230 miles. Once she’s had the treatment I can see a difference within a couple of days. The medical care in Cardiff has been very good and we are very grateful. However, locally it’s been disjointed and poor as there’s a massive lack of knowledge of arthritis in children. Travelling to Cardiff does put a massive strain on us. It means missing days of school and my partner has to take time off work which isn’t always easy. We’ve had to spend a week in Cardiff in the past when she needed physio as she can’t get that locally. We’ve even considered moving nearer to Cardiff on several occasions. It’s a real worry every day as our local doctors just can’t provide effective treatment for Aimee. We believe that by providing a multidisciplinary department, it would not only give a greater level of care to the children but also help raise awareness and knowledge of professionals and services outside of the Cardiff area. This would enable children across Wales to lead a childhood that is not dominated by arthritis.’

I think this is a most moving statement—the lives of a family with a young child that suffers from juvenile idiopathic arthritis. I will now refer to that as JIA. I think Darren succinctly summarises how a specialist paediatric centre would have a positive influence on services throughout Wales and therefore improve the lives of children with JIA.

When I was first approached by representatives of Arthritis Care, the National Rheumatoid Arthritis Society and the British Society for Rheumatology, who have all been doing fantastic work in raising awareness of this issue, I was surprised that such services did not already exist. It was disheartening to find out that Wales, with its 3.1 million population, is the only home nation without such a specialised service. This is in comparison to Northern Ireland with its 1.8 million population, which has one centre, and Scotland with its 5.2 million, which has two centres. England has 12 specialist paediatric rheumatology centres. I think it’s simply unacceptable that Wales has been left behind.

There are 12,000 children in the UK that suffer with JIA, and it’s estimated that 400 of these live in the south Wales region. As you can see, Members, this is not a marginal issue. An NHS England service specification paper published in 2013 states that, in NHS England, there should be one consultant paediatric rheumatologist, two nurse specialists, one physiotherapist and one occupational therapist per 1 million of the population or every 200,000 children. Currently, an experienced adult rheumatologist at the University Hospital of Wales in Cardiff, who, I may add, is about to retire in the next few years, is providing the majority of specialist paediatric rheumatology services for south Wales. So, even this makeshift provision is very fragile, given the impending retirement. However, some children from south Wales are travelling to Bristol, Birmingham and even beyond. As shown in the statement from Aimee’s family, travelling long distances for children with arthritis can be painful and stressful, and can cause disruption to education and family life.

This is an issue that the Government needs, in my view, to tackle. The succession planning should be taken forward in good time to avoid a situation of no service, and recruitment for the role would be made easier if plans are put in place to develop the service into a full tertiary provision.

JIA is a severe autoimmune condition that, if not properly treated and managed, can cause significant lifelong disabilities. Children with arthritis need access to high-quality health and support services to help limit the impact of their condition and to help them reach their true potential. According to AbbVie, the pharmaceutical research and development organisation, one of the most important factors to ensure that a child with JIA doesn’t have severe arthritis and joint damage when they’re adults is for children to receive early diagnosis and treatment. The longer arthritis has been active before treatment begins, the more difficult it is to control the disease. This is just one aspect of the problem, but early diagnosis and treatment can go as far as prolonging an arthritis sufferer’s life, it is so crucial. I believe that, with a population of over two million in south Wales alone, 400,000 of these being children, there is an overwhelming case for a specialist paediatric rheumatology centre in Wales.

Point 4 of this motion asks the Assembly to note that the Welsh Health Specialised Services Committee, WHSSC, is currently undertaking a review. The review will look into the needs of the Welsh population and assess any gaps in the provision against demands, service quality and specification. I welcome this review, and I welcome the news that upcoming meetings have been scheduled between WHSSC and the relevant organisations, such as Arthritis Care. I hope that this is a signal of progress for the development of such a centre. The looming retirement of the current rheumatologist adds a time pressure to this issue, and WHSSC’s review isn’t expected to be finalised until early 2018. However, the evidence is already clear on the need for a full multidisciplinary service. The WHSSC review could usefully look at how to implement a service that would best meet the needs of the population rather than again looking at whether Wales needs one at all. We’ve already been left behind the other parts of the UK. I believe the Government should give a firm lead and indicate that it is minded to commission this service so that Wales is not the only part of the UK without reasonable local provision.

Deputy Presiding Officer, if I may conclude with this, which is a final extract taken from Aimee’s story, again in the words of her dad:

Aimee’s condition is difficult for her. She just can’t do the same things as everyone else. At the age she is, it gets highlighted a lot. It’s little things like having a lot of time off school so she never wins the attendance awards or not being able to run about with her classmates. There’s always a constant reminder that she has arthritis.’

Deputy Presiding Officer, I believe that we can do more to improve the lives of these young children, who are already struggling with a condition that makes everyday life a challenge. I commend this motion to Assembly Members. Thank you.