6. Debate on the Petitions Committee report: Petition P-04-682 Routine Screening for Type 1 Diabetes in Children and Young People

Part of the debate – in the Senedd at 3:56 pm on 3 October 2018.

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Photo of Vaughan Gething Vaughan Gething Labour 3:56, 3 October 2018

Thank you, Deputy Presiding Officer. I'd like to start by apologising to the Chamber for being late for the first minute of this debate, but in particular to apologise to Peter's family for missing part of what is a very important and emotionally charged debate about the work done by Assembly Members considering their petition, and indeed not just the response by the Government but more importantly the response of our national health service. And so I would like to thank the Petitions Committee and every Member who's contributed today, whether on the committee or not. Many others have been struck by not just the story of Peter Baldwin but actually that determination to then try to make sure that the family's determination to make sure that it leads to improvement actually drives the conduct of politicians in this place and beyond. 

And that's been helped by the work of the petitioner and the wider family, together with Diabetes UK Cymru, to help improve awareness of type 1 diabetes amongst the public and, crucially, amongst healthcare professionals in Wales. And all of us can empathise with the grief and the upset for Peter Baldwin's family, but, more than that, like every other Member who has spoken and those who have not, I really do admire the courage that the family has shown in talking about their experience, which is difficult and painful in itself, but in trying to make a difference for other families too. 

The Welsh Government notes the report and the motion, which we will be supporting. We did not support the original petition, because of the absence of evidence for the effectiveness of a population screening programme. And that's a point that's been acknowledged through the life of the petition and the committee's work by both the petitioner and Diabetes UK Cymru. However, I do welcome the specific recommendations that were made by the committee after their inquiry. Again, like other Members, I acknowledge the importance of the early detection of type 1 diabetes and, as has been said, it does feature prominently in the diabetes delivery plan for Wales. So, I was pleased to accept or accept in principle all of the recommendations made by the committee. They are very much in line with work that is already under way or has been completed by health boards in Wales to improve diabetes care.

We accept in principle recommendation 1. The Government endorses the recommendations of the National Institute for Health and Care Excellence, NICE, and that does guide healthcare professionals and organisations on the identification and investigation of suspected diabetes. But their guidance does not recommend that all unwell children are asked about the symptoms of type 1 diabetes. As the Chair said in his introduction, clinicians must use their clinical judgment, based on their training and available guidance, to guide investigations of unwell children, and that includes the additional training that we are rolling out through the service. And that is consistent with Diabetes UK Cymru's evidence that finger-prick testing should follow if any of the symptoms are present.

Health boards in Wales have routine processes for disseminating NICE guidance, and clinicians are aware of their responsibilities in relation to the use of such guidance. In addition, the referral pathway has been issued to all health boards, and that reinforces the criteria and the approach to the assessment of suspected diabetes amongst children and young people. The diabetes delivery plan for Wales commits us to a public awareness-raising campaign led by Diabetes UK Cymru as partners on the diabetes implementation group, and that has been delivered in conjunction with Diabetes UK Cymru, the petitioner and the wider family.

The Welsh Government accepts recommendation 2, as a national referral pathway based on NICE guidance, as well as awareness of materials developed by Diabetes UK Cymru, has been issued to every health board.

The Welsh Government also accepts recommendation 3, and this is a point that a number of Members referred to in their contributions. The guidance on point-of-care testing has already been issued to health boards, and it was recently reiterated as part of the dissemination of the referral pathway. The Welsh Government is seeking assurance from assistant medical directors for primary care regarding the availability of glucose meters in primary care. Our understanding is that they are widely available, but assistant medical directors are considering a survey for all practices to include this point-of-care testing equipment, and I'll be happy to report back to Members on this point to confirm the action taking place to provide that reassurance, but also the results of that exercise.

The Welsh Government accepts recommendations 4, 5 and 6. We've already written to health boards regarding the national referral pathway and, in doing so, we've highlighted the availability of awareness-raising materials and e-learning for type 1 diabetes in children and young people. That includes specific training provided for GPs by the Primary Care Diabetes Society.

The Welsh Government accepts recommendation 7, as a diagnosis of type 1 diabetes is monitored and reported to the national paediatric diabetes audit.

We also accept recommendation 8. Health boards should already report suboptimal diagnosis as patient safety incidents. That's not so much about that accountability; it's actually to promote learning amongst healthcare professionals. It's in our interest for healthcare professionals to be open when things have gone wrong, to learn, and to try to make sure that we actually reduce, minimise and eliminate those incidents in the future.

We accept, in principle, recommendation 9, and this was dealt with in the Chair's initial contribution. The provision of symptom information to parents during pregnancy or early years for what is acknowledged as a relatively uncommon condition—and it typically presents long after childbirth. So, the available evidence is that it's unlikely to support the earlier identification of type 1 diabetes. However, Diabetes UK Cymru has delivered a public awareness campaign, as committed to in the diabetes delivery plan, and we do want to help draw parents' attention to the relevant symptoms.

We also accept, in principle, recommendation 10. We will continue to work with partners to promote the four Ts: thirst, tired, toilet and thinner. We've already included it as part of the referral pathway for healthcare professionals. However, in terms of creating awareness in early years and education settings, we have to be mindful that there isn't always the evidence to support that being an effective campaign for the early identification of conditions like type 1 diabetes. A recent study from New Zealand has shown no effect following a two-year public information campaign, but we will continue to look for ways to ensure that appropriate staff, including those who work directly with children and young people, like health visitors and school nurses, are aware of key resources issued by Diabetes UK Cymru and others, and, of course, of the relevant NICE recommendations.

I want to finish, again, by recognising that we're here today because of a very personal tragedy, but more than that, the determination of Peter Baldwin's family to make a difference, and they have already made a considerable difference. We will continue to listen to the evidence and to learn from what we are already committed to do, and I look forward to further scrutiny on what we and our NHS are doing and will do and, crucially, to see what difference we have made and what more we can still do.