We now move on to our next item on the agenda. If people are leaving the Chamber, please do so quickly and quietly.

We now move to the short debate, and I call Janet Finch-Saunders to speak on the topic she has chosen.

Diolch, Deputy Presiding Officer. This, basically, is a call for GPs to undertake routine screening for type 1 diabetes in children and young people. Lynne Neagle AM has kindly offered to give a minute, and my colleague, Mark Reckless.

I would like to speak today on the importance of screening particularly in children and young people, especially when they do present with the very four telling signs of severe illness. The potentially devastating effects of type 1 diabetes have been highlighted to me through evidence given to me, as a member of the Petitions Committee, by the family of the late 13-year-old Peter Baldwin, who tragically lost his life in early 2015 as a result of diabetic ketoacidosis—DKA. Peter's family may be with us this evening and were certainly doing their best to be here. I know that his mother and father, along with Diabetes UK, have worked very hard to try and ensure that no other family have to go through what they've had to endure.

In her words—this is the mother's words:

'Peter loved life at school and his friends. He was a fit and healthy teenager who had the world at his feet. He'd just been to Germany with the school and had come back with a winter cold. On New Year's Eve, he was very unwell, so we visited our GP. He diagnosed a chest infection, giving us antibiotics. No type 1 test was offered or considered. I explained that Peter was sleeping lots and drinking lots, which we now know are two of the major signs of the four Ts.

'Twenty four hours later, at 4.30 p.m. on New Year's Day, we called the out-of-hours service and explained that we were very concerned about Peter, who was fast deteriorating, with laboured breathing and delirium. Insisting that this was very urgent, we were transferred to 999, which was engaged for quite a short time. I asked for an ambulance, which I had to be very direct about; the operator kept asking if this was deemed necessary. Thank goodness I insisted and I stuck to my guns—many at this point would've given up. The rapid response paramedic arrived shortly and the first thing he did after giving Peter oxygen was to prick his finger. He diagnosed Peter on the spot with type 1 diabetes and it took less than 30 seconds. The paramedic called an ambulance and within 15 minutes, we were in the resus department at the Heath hospital. Peter was given the right care. He fought for six days, but his poor little body couldn't cope and he never recovered.'

Diabetic ketoacidosis can be fatal. Peter had presented at his GP surgery days before. A two-second finger-prick test by his GP at that time could and would have diagnosed type 1 diabetes and given Peter and his family a vital 24-hour head start to fight the DKA. It is a testament to the dedication and commitment of Peter's family to campaigning in his memory that I'm stood here tonight raising this. They want—and I want—to make sure that no-one else ever has to go through the same horrific experience that they have and that nobody loses their child unnecessarily.

Type 1 diabetes is an autoimmune condition, where the body is attacked and destroys insulin-producing cells, meaning that no insulin is produced. This causes glucose to quickly rise in the blood and everyone with type 1 diabetes must therefore take insulin to control their blood sugar or blood glucose levels. The condition is not preventable and there is no known cure. We do know that around 1,500 children and young people have type 1 diabetes in Wales. The peak age for diagnosis is around nine to 14 years of age, and Diabetes UK tell us that, of these, 24 per cent—that's around 360—will have been diagnosed very late in the life-threatening stage of DKA or diabetic ketoacidosis. In the under-five age group, this number increases to 29 per cent. At this stage of late diagnosis, type 1 diabetes is a rapid onset condition, resulting in a child becoming critically ill and very fast. If left without immediate testing, referral and treatment, this can be fatal. 

We also know that type 1 diabetes in children is relatively rare. The Royal College of General Practitioners estimates the rate amongst children under 15 to be 187 in every 100,000 children, meaning that a GP might go their entire career without experiencing such a case. 

Further, a range of common childhood illnesses such as flu, water infections or chest infections can be misleading and can sometimes lead to misdiagnosis, which is why it is so very important that we raise critical awareness of the potential meaning of these symptoms.

I want to make it clear that this campaign, this debate, is not calling for population-wide screening. The Cabinet Secretary has made it clear that this would create concern about a significant number of unnecessary referrals and investigations. Therefore, this call is for screening to take place in every instance that a child or young person presents with the four symptoms that we know are key indicators of type 1 diabetes, the four Ts: tired, thirsty, toilet and having lost weight, being thinner—feeling more tired than usual, being thirsty and not being able to quench that thirst, going to the toilet a lot, bed-wetting by a previously dry child, or heavier nappies in babies, losing weight and looking thin and gaunt, more so than usual.

If a GP believes a child to have type 1 diabetes, then they must refer them immediately and on the same day to their local specialist paediatric team to get immediate treatment and to prevent potentially fatal DKA. We know that testing for diabetes when these symptoms present is very easy, and it is very cost-effective when one considers that we are talking about a child's life. It takes two seconds. A finger-prick test undertaken by a GP every time a child presents with these symptoms allows for the detection of type 1 to take place as early as possible in primary care settings and thereby offers a real potential and a real chance to reduce the instances of undiagnosed type 1 diabetes.

This has been supported in evidence received by the Petitions Committee from Diabetes UK, the children and young people's Wales diabetes network, through representation from Dr Christopher Bidder, whose letter is supported by a number of health boards, as well as the Royal College of Paediatrics and Child Health. The Royal College of Nursing has noted that the four Ts should be asked routinely as part of a history-taking exercise. In principle, there would be no reason why blood glucose testing of children and young people shouldn't be carried out more routinely in primary care settings. Devices are portable, they're inexpensive, and this provides flexibility about where the tests can be carried out. But staff do have to be adequately trained and the resources available to carry out the test—and, obviously, the required follow-ups.

Additionally, Betsi Cadwaladr University Local Health Board has noted that education for primary care health professionals should include raising the awareness of the classic symptoms for type 1 diabetes and prompt on-the-spot finger-prick blood glucose testing for any individual. Clearly, there is much support for this proposal. So, why is it not being taken forward effectively, and why is this concern not being taken seriously?

Despite almost worldwide support for a finger-prick test when children present with these symptoms, and the presence of finger-prick equipment in all GP surgeries, the Royal College of Nursing has noted that currently there are no agreed national standards for primary care education relating to diabetes. In taking evidence in committee, we soon became aware that there do still remain some disparities across health boards in terms of type 1 diabetes pathways for children and young people. In their written submissions, only the Cardiff and Vale, Cwm Taf and the Betsi board specifically mention the pathway by name. Abertawe did not specifically mention a pathway, but noted that GPs were expected to follow National Institute for Health and Care Excellence guidelines. Aneurin Bevan stated that they do not have a formal pathway, but noted their expectations for referral to a children's unit for same-day assessment were in line with NICE guidance. Powys noted a limited variation in their diagnosis and referral pathway due to the various NHS providers used in different areas of the health board, and stated that it does not have a policy for point-of-care blood glucose testing in primary care. Hywel Dda did not specifically detail a pathway or even refer to the NICE guidance.

There is some progress: Cardiff and Vale noted that an all-Wales pathway for diagnosis of diabetes in children and young people is in the final stages of preparation. The pathway emphasises point-of-care blood glucose testing in all children where diabetes might be suspected, in accordance with NICE guidelines, yet no mention of the four Ts is made here and this is the critical point here. We still await the outcome of the all-Wales pathway.

Now, I trust that following this debate and, more so, following the massive campaign that this family, Diabetes UK and other organisations, medical—you know, people in the medical sector. They've really emphasised the need that, when children present with the four Ts, a simple glucose blood prick testing would really made the difference. I suppose, really, the reason I'm raising this here today is the frustration that the Cabinet Secretary will not push forward with a drive to ensure that this simple testing can take place in all GP surgeries when children with the four Ts present.

I'd like to finish by quoting Beth Baldwin once more on our aims here, which are immediate, short and long term:

'Sharing Peter’s story and introducing type 1 testing as part of protocol, refreshing GP and primary care awareness, annual e-learning for the dangers of undetected type 1 diabetes, working in partnership with organisations to create awareness campaigns.'

Cabinet Secretary, I urge you to consider this as a matter of vital priority. The cost for such a campaign for routine screening is low and, again, does not compare when we're talking of the life of just one child. It is crucial that we work to prevent the risk of potentially fatal DKA for the 24 per cent of children and young people who are diagnosed late and at a critical, life-threatening stage, with type 1 diabetes. Clearly, here, vigilance and testing can save lives. You have the power and you have the ability to get that message across. Please do it, Cabinet Secretary. Thank you.

Can I thank Janet for letting me have a minute of her time? I've also been grateful to the Cabinet Secretary for health for his recent engagement on the Know Type 1 campaign and for meeting with myself, colleagues Julie Morgan and Jayne Bryant, and Diabetes UK Cymru and Beth Baldwin, who has campaigned so courageously following the tragic death of her son, Peter, two years ago. As the Cabinet Secretary knows from those meetings, I strongly support the calls for an awareness-raising campaign about type 1 diabetes, particularly amongst GPs, school staff and parents.

Janet has very clearly articulated how easy it is to save a life with a simple finger-prick test. I am keen to see, Cabinet Secretary, further direction from you and Welsh Government to raise awareness on this. Diabetes UK Cymru would like to see type 1 information presented to parents as regularly as it is on other childhood conditions like meningitis, for example. This could be done through health visitors and use of the red book—very simple but also very effective. They're also preparing information packs for schools and GP surgeries, which will be ready next year, and a video resource that can be used for GPs. I think there is a key role here for Welsh Government to facilitate the distribution and promotion of these materials so that their use is encouraged.

I'm conscious I've only got a minute so, just finally, can I ask if there is any update, Cabinet Secretary, on the discussions you've had with the children and young people's diabetes network on increasing the availability of glucose meters and electronic prompts for GPs? 

My exposure to type 1 diabetes mainly came through attending summer camps with the BDA, the forerunner of Diabetes UK, with my father, a doctor, and my mother, a nurse, who helped run those camps for young diabetes. Janet mentioned only, I think, 0.2 per cent of children have type 1 diabetes and some would feel very isolated and wouldn't feel normal or understood because of having to inject themselves regularly. So, I think that was so useful for them and raising awareness in the way Janet suggests I think will also help on that front.

I think also what she says about the four Ts and having the GP respond to those by doing the finger-prick test is a better way of dealing with what was suggested they're doing in Aneurin Bevan, and also, I think, maybe the NICE guidance, of referring to a separate centre, because that test is so easy for a GP to do. It can also rule out ones who would not otherwise need to be tested, if they don't have type 1 diabetes, and I trust it will be met with much more enthusiasm by GPs than what they had to do, I think, several decades ago, which was taste the patient's urine to see if it was sweet. A little blood test, I think, is more realistic, and is the way forward.

Thank you very much. Can I call the Cabinet Secretary for Health and Social Services to reply to the debate? Vaughan Gething.

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. 

Thank you very much. That brings today's proceedings to a close. Thank you.

The meeting ended at 18:32.