WHEN Seren Morgan, 10, from Carmarthen was rushed into hospital seriously ill in April of 2024, her and her family’s lives changed forever.
Seren was diagnosed with Type 1 diabetes and now, thanks to the support of her family and the paediatric diabetes team based at Glangwili, Seren is able to manage her condition and do many of the things she enjoys.
Ask Seren what she likes to do in her spare time and she reels out a full schedule – drama club, cricket in the summer, piano on a Wednesday afternoon, getting together with friends. And she has just spent time on a school trip at an outdoor pursuits centre in the Brecon Beacons.
But none of this has been simple. In the past, Seren’s mum Katie would drop her off at drama club but now she will stay there to keep an eye on her blood sugar levels. Seren could not stay overnight in Brecon with her friends – her parents took her to Brecon every day and brought her home each night.
“Seren got poorly at Christmas time with various viruses and then we were back and forth to the hospital in Cardiff. She was having really severe symptoms, which we just didn’t realise was diabetes Type 1,” said Katie.
“It was only when we went to our family GP, who looked at Seren and thought there was something really wrong, that we were whisked into Glangwili Hospital. And it was on the 16th of April that Seren was diagnosed with Type 1 diabetes. It was very shocking.”
“It was difficult, especially for Seren, because she went immediately into emergency treatment, which was really painful and really traumatic.
“We’re still having support now for Seren to get over what was a traumatic event in her life.”
Katie has praised the support she has had from Dr Simon Fountain-Polley and the paediatric team at Glangwili.
“The diabetes team at Glangwili Hospital, as soon as the GP realised what was happening, was like an absolute whirlwind. As soon as they realised what was wrong, we were surrounded by support,” said Katie.
Seren was started on an education and patient self-management course of the same name – the Seren Programme.
Katie and her family have set up a Type 1 diabetes support group for Carmarthenshire.
“One of the things we realised when Seren went in was that we needed support,” Katie explained. “We needed other families who were going through this to help us immediately. There wasn’t anyone. The closest group was Pembrokeshire, so we set up a Carmarthenshire Type 1 diabetes families’ group, which is now made up of lots of local families. We did a fund-raising event for the Carmarthen team in the summer and are planning another one at Christmas time.”
Katie said that people often think that once Type 1 diabetes has been diagnosed and a treatment plan put in place that the situation stabilises, and that life can return to some sort of normal. “It’s not a case of ‘she’s stable now’ – we need to manage it every day and night.
“We love the Hywel Dda diabetes team because, we know they are there, and they are lovely people. Any question that we’ve got they are willing to answer, and we have 24 access to the Paediatric Ambulatory Care Unit (PACU) ward if there is a problem and she needs to be checked over.”
“We trust them, which is massively important with diabetes Type 1 because we need to trust that they have equipped us as a family to care and support Seren but also that Seren is completely cared for by them, and we do feel like that.”
Paediatric diabetes team: Sian Southgate, Steph Griffiths and Dr Simon Fountain-Polley (Hywel Dda UHB)
And according to latest figures from the National Paediatric Diabetes Audit, Hywel Dda University Health Board’s (UHB) paediatric diabetes team is the best performing in Wales and third in England and Wales.
The National Diabetes Audit, conducted by the Royal College of Paediatrics and Child Health, collects data from NHS organisations across Wales and England to support clinicians in their work, to help patients get the best care and to use data to improve treatment and management.
One measure of success is a patient’s HbA1C number – a test which measures the amount of blood glucose attached to a patient’s haemoglobin, found in red blood cells.
Hywel Dda’s paediatric diabetes team is led by Dr Simon Fountain-Polley and Dr Swe Lynn.
Dr Swe Lynn, consultant paediatrician, explained: “HbA1C is an important blood test that gives a good indication of how well diabetes is being managed and is a very strong predictor of future health. It’s our predictor for the risk of long-term complications from diabetes. So, the lower the number the better.
“Within the national paediatric diabetes audit data for 2022 to 2023, our average HbA1C is the lowest in Wales and it’s the third lowest in England and Wales. There are more than 170 units – health boards, and NHS trusts in England, for example – that provide data to the National Paediatric Diabetes Audit (NPDA).
“This is a good achievement for us bearing in mind we’re a small unit in terms of the units across England and Wales.”
The paediatric diabetes unit was set up some 15 years ago when Hywel Dda UHB was formed and was one of the smallest teams in Wales. But specialist staff were recruited and now the team includes two consultants, dietitians, paediatric specialist nurses, admin support and a psychologist.
Steph Griffiths, clinical lead dietitian for paediatric diabetes supports children, young people and their families around nutrition and diabetes.
“A lot of work goes in to managing insulin, but blood glucose management can be supported through dietary changes as well,” Steph explained.
Part of Steph’s role is to educate children and their families around healthy eating habits and physical activity. This has involved dietitians working in children’s diabetes undertaking a project in which they have carbohydrate counted primary school menus within the three counties.
Steph continues: “We are fortunate to have a psychologist as part of the team now and this has made us a more psychologically focussed team. It’s really important that we think about the child away from their diabetes – diabetes is a long-term condition so it’s important to consider the impact of this on the child and the whole family.”
The Hywel Dda paediatric diabetes team covers Carmarthenshire, Ceredigion and Pembrokeshire and looks after up to 200 children and young people living with Type 1 diabetes.
The unit also treats children and young people living with Type 2 diabetes and other forms of rare genetic diabetes.
Type 1 diabetes is caused by pancreatic failure – which leads to an inability to produce insulin. This in turn leads to high blood glucose levels so patients have to give themselves insulin.
Dr Simon Fountain-Polley, consultant paediatrician, said: “There is no cure for Type 1 diabetes and our work is very much about learning to manage a chronic medical condition, from which you get no break. There’s no let up for the families from managing diabetes.
“So kids with Type 1 diabetes are admitted to the ward for their initial assessment and diagnosis and to learn about diabetes. We use the all-Wales Seren education programme. One of our nurses, Yvonne Davies, was involved with writing this, so that’s been really helpful and Seren is now an internationally recognised diabetes education package.”
Sian Southgate is a paediatric diabetes specialist nurse who works as part of the multi-disciplinary team. Her work includes delivering age appropriate SEREN structured education at diagnosis.
“Support and education for the children and young people living with diabetes, along with their families, is ongoing. There are key times in their lives when additional knowledge is required. For example, when commencing insulin pump therapy; or in preparation for moving to secondary school; and during teenage years preparing for transition from paediatric care to adult care there are additional things to consider and discuss.
“We work well as a team, advocating for our patients to ensure consistent care and messages. We adapt to and embrace change promoting opportunities for the children and young people to use new innovations in diabetes technology. Our team leads are excellent at advocating for our patients at management level, who in turn have always been supportive of our vision.”
Another factor in the success of the Hywel Dda paediatric diabetes team is their promotion of the use of technology.
Dr Simon Fountain-Polley explained: “Around 80 per cent of our young people are using insulin pumps to manage their diabetes, which is way above the NPDA average which is around 40-50 per cent. So, the early, regular use of technology which includes continuous glucose monitoring and pump use I think has really helped with our success.
“Also, most of our kids are on what we call hybrid closed loop systems. So that’s the next generation of pumps where they work in combination with a continuous glucose monitor, with the data from the monitor used by the pump algorithm to adjust the amount of insulin being infused, creating an artificial pancreatic function. This system is much more akin to the functioning of the working pancreas.
“NICE guidance for diabetes technology advises to use the hybrid closed loop, so we’re already ahead of the game, and I think that’s part of our success.
“We’re very open to technology and we’re early adopters of technologies. This allows us to get ahead of the curve and that means our population benefit in terms of their diabetes management and their long term HbA1C and therefore risk of complications.”
Other activities led by Simon, Swe and the team include visiting schools to raise awareness of diabetes and regular ongoing education for families living with diabetes. This includes a module for young people moving from Year 6 primary school to Year 7 – their first year in secondary schools and the challenges that can bring.
“We do exercise and activity modules combined with peer support,” Simon continued. “We bring families and young people together for a day. They do a bit of learning, but we also try and add in some activities that are enjoyable.
“Last year we took the kids going from Year 6 and Year 7 paddle boarding- this type of activity merges education and learning. It allows children to meet with other people with Type 1 diabetes and gain that support from a slightly wider peer group.”
Dr. Swe added that the team deal with a wide age range and this brings its own challenges.
“The youngest we see is 14 months old – so the children we see range from a very early toddler to those who are going to secondary school, those going through puberty and those who are doing GCSE and A-levels. All of them have very different needs in their life.
“We are fortunate that we have a great team with different areas of expertise and interests, so we are able to meet changing needs, whatever their age.”
Simon and Swe pointed out that the paediatric diabetes team is also active in terms of quality improvement and research. They regularly present data to the Wales Paediatric Society meetings and have presented data at the British Society for Paediatric Endocrinology and Diabetes.
“We’re constantly thinking about the work we do, looking at the data and trying to make changes based on that and then sharing that data with a wider audience,” said Simon.
“I think our success is not just concentrating on the pure medical, it’s about our thinking outside the box – our proactive use of technology, being innovative. We don’t stand still. We are constantly looking for the next thing to improve.”