Part of the debate – in the Senedd at 6:25 pm on 6 December 2017.
Thank you, Deputy Presiding Officer. I have listened carefully to the comments that were made in the debate today, and I recognise the Member for raising what is an important issue. All of us in this room are aware that diabetes can cause significant long-term health problems and, in rare circumstances, it can be fatal. Members here want to at the outset recognise the commitment, and, as Lynne Neagle said, the courage, of the Baldwin family in using their tragic experience to want to campaign to raise money for the cause but also awareness to try and improve outcomes for other families. I know it's been an incredibly difficult time for them as they've gone through the loss of a child to want to make sure that, as far as possible, other parents don't have to go through that.
I'm pleased that Janet Finch-Saunders clarified during her contribution that she is not calling for the regular routine testing of children. From the subject of the debate, it appeared to me that that would be the call that would be made, so I'm grateful that she clarified that during the course of her contribution. We know that there are researchers who are looking to develop a blood test that can identify the antibodies that attack cells in the pancreas years before the ultimate symptoms, though those tests aren't sufficiently accurate for use in population screening. In fact, in the Diabetes UK written evidence to the Petitions Committee, they recognised that population screening was not something that they would support; there isn't evidence to suggest that it would be the right thing to do and it would, in any event, be difficult.
Now, the challenge is how we get to the testing based on clinical judgment and recognising that it isn't practical to test all unwell children for type 1 diabetes. So, the challenge is how we prompt the diagnosis once an individual shows signs of type 1 diabetes in a more effective approach, as is recommended by NICE. This goes back to the evidence in the Petitions Committee. They support the current approach to test children and young people for type 1 diabetes when they present to a clinician with symptoms. The challenge there again is how do we get that being more consistent. That's why we've recognised in our updated diabetes delivery plan the need to support the awareness of symptoms to prompt people to seek early help from health services, and the plan committed to develop an awareness campaign led by Diabetes UK Cymru—and, of course, they've had significant support and impetus from the Baldwin family in doing so.
And, again, as Janet Finch-Saunders recognised, I don't think it hurts to remind ourselves of the four common symptoms: the need to go to the toilet a lot more and the onset of bed-wetting in a previously dry child; being really thirsty and not able to quench that thirst; feeling more tired than usual; and losing weight or being thinner than usual. In those circumstances, the encouragement is for parents to seek advice from their GP. But, given the number of health measures that are directed at the public and the small number of children who do develop type 1 diabetes, there are of course limitations that we should recognise in relying only on general public awareness raising. That's why our national plan highlights the need for health boards to ensure that staff are sufficiently knowledgeable to appropriately identify and refer on for suspected type 1 diabetes, because we do believe that the focus should be on the implementation of the evidence-based guidelines from NICE on testing and referral.
As Janet Finch-Saunders set out, NICE recommend same-day referral to a specialist diabetes service for suspected type 1 diabetes and immediate blood glucose testing for children presenting with nausea or vomiting, abdominal pain, hyperventilation, dehydration or reduced consciousness. We do want to ensure, as Janet's outlined and as, indeed, the petition as it's changed from its initial call to where it is now—. We want to ensure there is consistency among health services, and that is why the children and young people's diabetes network is developing a type 1 referral pathway. That should re-emphasise how people with suspected type 1 diabetes should be identified and referred for testing. On this point specifically, I'll come back to Lynne Neagle's specific ask about the availability of blood glucose meters, as I set out in my letter to the Petitions Committee of 6 October this year and indeed as has come from our previous conversations, so I will come back specifically on that point.
If the pilot that we're running is successful, and it shows an improvement in both identification and referral on, then the commitment that I've given is that we will roll that out across Wales, to have a consistent process and understanding to support clinicians. The network is already working with our NHS informatics provider to develop electronic prompts for clinicians to support adherence to the referral pathway if it is introduced. And, again, that's been part of the call from both Diabetes UK and the Baldwin family, and we specifically discussed that in the meeting with Lynne Neagle, colleagues and the Baldwin family. So, we're exploring a number of additional options which can support better diagnosis, such as the use of Datix reporting, which is a formal process of reporting adverse healthcare incidents, or where inappropriate tests are carried out. There is also the potential to use learning from these reports across the wider system to re-emphasise best and expected practice, and consideration is being given to making available an e-learning module for GPs. And, again, I'll come back to confirm how that is being taken forward.
The sad truth is there's no easy answer to this problem. Only a small number of children will develop the disease, and based on the evidence we have, the onset is too sudden for a screening programme to be effective. So, the challenge is how we have the consistency in approach from our clinicians. So, we need to support them to embed good practice and work with health boards on the consistency of service delivery. And, of course, follow-up services, such as diabetic retinopathy, are important to monitor the health of individuals who are diagnosed as having diabetes. But our focus will remain on the prompt identification of symptoms, diagnosis and treatment, and I do expect to update Members in this place or in other committees on the work that we are doing, and the work that I've committed to do, on having a pilot and then considering a roll-out to improve the position for every family, so that other parents are spared the unfortunate and the tragic circumstances that Peter Baldwin's family have had to go through.