We now move to item 6 on the agenda this afternoon, which is the debate on the Petitions Committee report, 'Petition P-04-682: Routine Screening for Type 1 Diabetes in Children and Young People'. I call on the Chair of the committee to move the motion. David Rowlands.

Motion NDM6814 David J. Rowlands

To propose that the National Assembly for Wales:

Notes the report of the Petitions Committee on Petition P-04-682, 'Routine Screening for Type 1 Diabetes in Children and Young People', which was laid in the Table Office on 13 July 2018.

Motion moved.

Diolch, Dirprwy Lywydd. I'm pleased to open this important debate on behalf of the Petitions Committee. The circumstances behind the petition that we are discussing today have been extremely moving for all the members of the committee. The petition was submitted by the family of Peter Baldwin. Peter, who was 13 and from Cardiff, tragically died in January 2015 from the effects of undiagnosed type 1 diabetes.

Type 1 diabetes is an autoimmune condition under which the pancreas does not produce insulin. The body requires insulin in order to convert glucose from food into energy and, without it, that glucose remains in the bloodstream leading to high blood sugar levels. Though type 1 diabetes can occur at any age, it is most commonly diagnosed under the age of 15. There are approximately 1,400 children with diabetes in Wales, the vast majority of which—around 96 per cent—have type 1 diabetes.

Some of us in this Chamber today will know that the onset of type 1 diabetes can be extremely rapid, as well as extremely dangerous. Unfortunately, awareness of type 1 diabetes and the most common symptoms of the condition do not have a high enough public profile, and improving both the recognition and the diagnosis of type 1 is the primary thrust of this petition. As the effects of undetected type 1 diabetes can be fatal, early diagnosis of the condition is absolutely critical. However, it is also the case that the common symptoms can easily be mistaken for other less dangerous conditions. Those symptoms—known as the four Ts—are crucial to this afternoon’s debate. They are: toilet; thirsty; tired; and thinner. And, I feel that, as we may have more than those people just in this Chamber listening to this debate, I'd like to reiterate those four Ts: toilet—an increased need to urinate; thirsty; tired; and thinner. Given that we would hope that we would have a wider audience than this Chamber, I shall again reiterate those points: toilet—an increased need to urinate; thirsty; tired; and thinner.

Because of the difficulties in diagnosing type 1, and because of its relative rarity, around a quarter of the cases are not diagnosed until the patient is in diabetic ketoacidosis—I'm sorry if I haven't said that correctly—or, commonly known as DKA. Tragically, this was the situation faced by Peter and his family. Peter was given an on-the-spot diagnosis of type 1 diabetes and DKA by a rapid-response paramedic who had used a finger-prick blood test, on New Year’s Day 2015. Twenty-four hours earlier, Peter had been seen by a GP who had diagnosed a chest infection, based upon his symptoms, and prescribed antibiotics, but who had not used a finger-prick test. The paramedic immediately called an ambulance, and Peter was admitted to hospital. Despite the treatment he received, it was too late to save his life.

I want to pay a tribute to Peter’s family at this point. The petition was submitted by Peter’s grandfather, Anthony, and the compassion, drive and clear-sightedness of the whole family has been apparent to the Petitions Committee through our deliberations. In particular, Peter’s parents, Beth and Stuart, and his sister, Lia, have courageously strived to ensure that the tragedy experienced by their family should lead to improvements for others. It is also notable how they have conducted their campaign in an extremely positive way. The petition is just one aspect of their efforts to raise public awareness of type 1 diabetes, as well as significant funds for Diabetes UK Cymru. I am convinced that these efforts have already had a major impact, and the whole family should be immensely proud of everything they have achieved so far.

Turning now to the committee’s report on the petition and to our recommendations, we have considered a wide range of issues in relation to the identification and diagnosis of type 1 diabetes among children and young people. The petition was first received in March 2016. Although the petition refers to 'routine screening' for type 1 amongst children and young people, the committee established that the Baldwin family’s primary focus is on the need to improve early diagnosis of type 1 diabetes, and awareness of the condition amongst both health professionals and the public. It has been agreed by all involved in the petition that this would be best achieved through ensuring that the appropriate tests are carried out when a person presents with the four Ts symptoms of type 1.

In our report on this petition we have made 10 recommendations to the Welsh Government. We believe these would assist the timely diagnosis and treatment of type 1 diabetes. The committee welcomes the fact that the Cabinet Secretary for Health and Social Services has accepted, at least in principle, all of our recommendations. We hope this indicates a shared commitment to making progress in this field, although I will be seeking some further information on some aspects of his response during this afternoon’s debate. 

As I have already said, timely diagnosis of type 1 diabetes is of critical importance. DKA is both a life-threatening condition and an extremely traumatic experience for children and their families. Indeed, the Welsh Government’s diabetes delivery plan highlights the need for an urgent blood glucose check and an immediate referral to specialist services if diabetes is suspected. However, our investigations identified several barriers to early diagnosis. These include: low general awareness and recognition of type 1; potential deficiencies in staff knowledge and training; and concerns over a lack of access to rapid testing equipment in primary care.

Our recommendations seek to address these barriers. Recommendation 1 calls for the Welsh Government to seek to ensure that the four Ts symptoms are routinely asked when unwell children present in primary care, and that appropriate testing is carried out if required. Our second recommendation relates to the implementation of the National Institute for Health and Care Excellence guidance on this subject. In accepting these recommendations, the Cabinet Secretary has endorsed the NICE guidance and emphasised the need for healthcare professionals to use their clinical judgment.

We are pleased, of course, that the Government has accepted the thrust of our recommendations. Nevertheless we know, not least from the case of Peter Baldwin, that clinicians do not always ask specifically about the four Ts and parents may not mention them without being prompted. I therefore want to reiterate the committee’s view that GP consultations represent a crucial opportunity to identify type 1 diabetes. We believe the Welsh Government should take all possible steps to ensure that the right questions are asked in primary care, in order to seek to avoid further cases where type 1 diabetes is not identified until it is too late.

In this regard, a major step forward during the lifetime of this petition has been the development of a national referral pathway for type 1 diabetes. It emphasises the four Ts and that any suspected case of type 1 diabetes should be treated as a medical emergency. Developed by the children and young people diabetes network, and piloted in Cardiff and Vale health board, this pathway has now been issued to all health boards. The committee welcomes the fact that this has been rolled out so quickly.

In accepting recommendation 6 in our report, the Cabinet Secretary has stated that the Welsh Government will seek assurances from health boards that the pathway is being adopted locally. I hope that he will also be able to confirm today that he expects health boards to offer training to GPs to accompany the new pathway, as we understand that this was a strength of the pilot exercise in Cardiff and Vale. 

Concerns were also raised with us about the availability of testing equipment in primary care. The petitioners have called for all GPs to have immediate access to finger-prick blood glucose testing equipment, and the committee recommended that the Welsh Government should seek assurances from health boards in this regard. We are pleased that the Welsh Government has accepted this recommendation. The Cabinet Secretary has stated that guidance has already been issued and that those assurances will be sought. The committee would welcome any update he can provide today on this work.

Recommendation 7 in our report referred to the need to monitor progress in relation to the diagnosis of type 1 diabetes. In his response, the Cabinet Secretary refers to the pre-existing national paediatric diabetes audit. The committee’s understanding is that this includes an indication of the number of cases diagnosed when DKA is already present. However, it doesn’t capture detail about the process of diagnosis and our recommendation seeks to challenge how the Government and health boards can monitor improvements at this stage of the process. Therefore, I ask the Cabinet Secretary to address how this monitoring could be conducted. One mechanism could be through the annual monitoring of the diabetes delivery plan. Whilst this plan highlights the importance of early detection of type 1 diabetes, the most recently published statement of progress lacks any detail about diagnosis. So, perhaps the Cabinet Secretary will consider how the Government can better report on progress in this area in future updates on the diabetes delivery plan.

The final matter raised by the Baldwin family and our report is public awareness of type 1 diabetes and its symptoms. We have recommended that the Welsh Government should do further work to highlight the symptoms of type 1 diabetes and to provide additional information in material provided to expectant and new parents, such as through the personal child health record, otherwise known as the 'red book'. 

Whilst both of our recommendations in this regard have been accepted in principle, the narrative supporting this does not appear to indicate much in the way of new or different activity. The justification given for us is that the symptoms of type 1 diabetes often appear some considerable time after birth. Well, whilst we acknowledge this is truth, however it is the committee’s view that parents are very receptive to child health messages in the early years and the four Ts are a simple message that can be easily retained, in the same way as has occurred with meningitis, for example. We and the petitioners would appreciate that the avenues for disseminating messages about the symptoms of type 1 diabetes to parents and others in contact with children and young people are fully explored. We consider this to be extremely important in the light of the need to act quickly when the signs of type 1 diabetes appear.

In conclusion, Llywydd, I want to emphasise that considering the circumstances of this petition has been both a very sobering and sad experience for the Petitions Committee but also a real privilege. The tremendous courage of Peter’s family in seeking to see positive change arise out of such terrible circumstances should command enormous respect. I thank them all on behalf of the Petitions Committee for their ongoing work. I also welcome the positive responses to our recommendations from the Cabinet Secretary, and I hope that he will give consideration to the additional points raised by the committee and by other Members this afternoon. Diolch yn fawr.

Can I first of all start off by congratulating David Rowlands on an excellent speech to open this very important debate, which summarises the situation very well indeed, and also the powerful campaign that we know has been run by the Baldwin family now for a long time because we do need change?

Now, I don't know if I've mentioned before that I've been a GP in Swansea for the last 34 years, but if I haven't, I put it out there again, and obviously type 1 diabetes, especially in very young children in their diabetic ketoacidosis phase, is really a terrifying disease that I get confronted with about once every seven years on average. You've just got to think about it as a GP and just check the blood sugar with a pinprick there, because the classic 4 Ts are not always there in a very young child, in the toddler and in the baby. The situation there is that a child can just present with a chest infection when the rest of the family have got a chest infection; the child can just present with diarrhoea and vomiting when the rest of the family have diarrhoea and vomiting. What makes you check the pinprick blood sugar? Well, there's an innate sort of gut feeling and stuff. So, yes, in older children, you have the 4 Ts: the children have been drinking gallons, they have been passing urine by the gallon, they have lost weight, they are ill and tired and feel dreadful. Those are the sorts of symptoms that we need to highlight and get out there, as David has very eloquently stated, in terms of awareness raising.

But in terms of the GP and the primary care response to this, we have to have pinprick glucometers on our desks, and in our medical bags when we do house calls. Because when there's an ill child, we check the blood sugar—it should be there automatically. Thinking ill child—and particularly a child who is more ill than I would think it should be with the diarrhoea and vomiting—check the blood sugar. Yes, about once every seven years, it's going to turn out to be diabetic ketoacidosis, rather than the ordinary gastroenteritis. But, as we hear, the tragic conclusions and legacy of not making that diagnosis lives with families, and the professionals concerned, forever more.

So, the main thrust is to run with the recommendations from an excellent report by the Petitions Committee. Frankly, in terms of pinpricks, and we're talking resources for primary care—the Cabinet Secretary will always know that I'm banging on about the shift of the resources to primary care—this should be happening anywhere. So, I'm not going to be particularly harsh on the Cabinet Secretary this afternoon. We should be having the pinprick glucometers, the glucose testing in practice anyway. Every GP should do that as a measure of professional excellence. And we owe it to our patients, because sometimes the clinical picture is not clear-cut—you just have an ill child. And I would recommend to my GP colleagues: an ill child, you can't work out what's going on—check the blood sugar.

Support the motion. Diolch yn fawr.

Type 1 diabetes is the most common chronic condition in children and young people. As we know, if left undiagnosed, it can be fatal. I commend the Petitions Committee for their work on this petition, and I welcome Welsh Government's response in accepting the majority of the committee's recommendations. One of the concerns raised by the Baldwin family and Diabetes UK Cymru was that there wasn't sufficient equipment in GP surgeries to allow them to check for type 1. I'm pleased the Welsh Government is committed to taking action on this point, by seeking assurances regarding the availability of equipment in primary care.

The recommendations touch on the importance of raising awareness of the symptoms of type 1 diabetes. I'm again pleased to see Welsh Government has taken steps to highlight the symptoms with health boards, but hope that this becomes a regular occurrence in future Welsh Government communications, and I'd be interested to hear more from the Cabinet Secretary today about how he intends to monitor that awareness.

In the meetings I have had with the family of Peter Baldwin, I have seen and heard how type 1 can devastate a family. I want to pay tribute to the Baldwin family for their tireless and courageous campaign to ensure that no other family suffers in the way that they have. Indeed, we know that the Know Type 1 campaign has already resulted in families being diagnosed safely with type 1. So, it has already saved lives.

We all in this Chamber have our part to play, not just those of us who are GPs. I hope that everyone in this Chamber is now aware of the 4 Ts of diabetes—toilet, thirsty, thinner and tired. And I encourage you all to spread this message as far and wide as you can.

I speak as another member of the Petitions Committee who heard the evidence that was given to us. Can I also thank Beth Baldwin for her commitment and tenacity on this subject? She and her family have courageously strived to ensure that the tragedy experienced by their family should lead to improvements in awareness and identification of type 1 diabetes in children. Without her, we would not be having this debate today. For that, we owe thanks to Beth Baldwin and her family. It is also notable how the Baldwin family have conducted their campaign in an extremely positive way. The petition is only one aspect of their efforts, and along with it they have continued to raise public awareness of the symptoms of type 1 diabetes and raise very significant funds for Diabetes UK Cymru. They should be immensely proud and, again, I would like to personally thank them, and I’m sure that the whole of this Chamber would.

Type 1 diabetes has touched my life twice: once with fatal consequences and once with a happy ending. Whilst working as a relatively young college lecturer, I had a student who continually drank water and frequently visited the toilet. He was generally fit and apparently healthy. He went away on holiday for two weeks one Easter, was taken ill, had complications as his diabetes had not been identified—it was too late, and then he died. The second case concerned someone who I worked with who also drank water continually. A colleague suggested he visited a doctor to be tested for diabetes. After several days of nagging—not just from the one colleague, but by the whole office, the original colleague kept on, but so did the rest of us, including me and others there—he made an appointment with the doctor. When he visited the doctor, he was treated as if he was wasting the doctor’s time—he was young, fit and slim, active, weight lifting, doing all the things that young fit men do. The doctor eventually agreed to test him for diabetes. Twenty-four hours later, he was in hospital. He is now back to normal and with his diabetes under control. He owes his life to his colleagues and his own tenacity.

Diabetes is a serious lifelong condition where your blood glucose level is too high, although I’ve been told by people—I’m sure other people have—‘I’ve got a bit of diabetes’, as if it was a cold or a minor virus they were suffering from. We know the common warning signs—as I say, we know the four Ts—but does everybody out there know them? And I think that's a challenge to all of us: if you’re going to do something useful in society, it’s to get across as often as you possibly can—thirsty, tired, toilet, thinning—'Any two out of four, go and get it checked.' Most likely, it isn't diabetes, but the result of you not testing it can be fatal.

I welcome the Government’s response when they say the importance of the early detection of type 1 diabetes is acknowledged in their diabetes delivery plan for Wales. There are clear guidelines in place to support healthcare professionals in the investigation of suspected diabetes, and the complications of diabetes are reported as part of the national paediatric diabetes audit. I further welcome the acceptance that the Welsh Government should seek assurance from health boards that appropriate blood glucose testing equipment is available in all relevant primary care settings and that all GPs have access to equipment that will help to identify potential cases of type 1 diabetes upon presentation.

The key is to work with health boards and other key partners to ensure that the four Ts campaign is promoted. But it’s not just in hospitals, it’s not just amongst health professionals—other partners are needed in schools and colleges. School and college staff need to know what to look for. Can I just say how much I wish I had known what to look for that time, as I’m sure my colleagues do? I do not want a case like the first one I described for anyone else to be talking about. Thank you.

I’d like to thank the chairman for presenting our committee report in the manner he did, and thank the clerk and my fellow Petitions Committee for actually having such a proactive approach on this issue. Acknowledgement must go to the late Peter Baldwin’s family for helping our committee and for seeking to use their own tragic circumstances to ensure no other family has to endure such a devastating loss.

I am pleased to see that the Welsh Government intends to accept in principle the 10 recommendations made by the Petitions Committee, and I have confidence that if these are implemented, the detection rates of type 1 diabetes can be improved to prevent families like the Baldwins from undergoing the tragedy of losing loved ones to misdetection.

Approximately 1,400 children have diabetes in Wales, 96 per cent of which have type 1. The key aim of this report is to make sure that when any child shows symptoms of the four Ts—toilet, thirsty, tired and thinner—they get the right diagnostics. By making sure children and young people get a quick diagnosis and early treatment, we can avoid them becoming seriously ill with diabetic ketoacidosis. What we need is for GPs to be aware of the symptoms and considering that the test is so inexpensive to test children who show any sign of these symptoms. I would also like to see the Cabinet Secretary increase his own department’s awareness of the scale of this problem, so that no child ever is let down because a simple test was not administered.

Recommendation 3 sees the Welsh Government commit to seek assurances regarding the availability of glucose meters in primary care. I'm really grateful that this recommendation has been accepted. However, I am concerned that the Cabinet Secretary finds no financial implications to this. The Welsh Government should be ensuring that all GP surgeries have at least one testing kit. There are nearly 435 GP practices in Wales. And, at a little cost, I would say the financial implications would be worth you ensuring—your department ensuring—that there is one in every single practice. Every single one of these needs this testing kit.

Recommendation 7 asks that the Welsh Government implement a means to monitor improvement with regard to diagnosis of type 1 diabetes. The Cabinet Secretary advised that the diagnosis of type 1 diabetes is monitored and reported through the national paediatric diabetes audit. However, for reference, information in the report from the NPDA highlights that, in England, diabetic ketoacidosis occurred in just over 20 per cent of new cases of type 1 diabetes, a figure that has only risen slightly between 2012 and 2015. Alternatively, the figures given for Wales fluctuate from 30 per cent to 18 per cent to 24 per cent, all in a three-year period. So, if I was the Cabinet Secretary, I would be wanting to find out more about that. So, this makes me question whether the NPDA has access to the appropriate information and whether the Welsh Government should do more to find out why these numbers fluctuate in the way they do.

This is a common occurrence throughout the Cabinet Secretary's response, whereby recommendations are accepted 'in principle' only to be passed over to other organisations or charities. Diabetes UK Cymru claims that Wales has the highest prevalence of diabetes in the UK. Therefore, the Welsh Government should do more, should accept more responsibility and be more proactive. Let's not forget that this petition started because a family lost a son due to missed diagnosis and not giving a simple and inexpensive test much sooner. Overall, I am glad that the Cabinet Secretary accepted or accepted in principle all the recommendations. It is however very important that we improve and monitor the processes we rely on in detecting diabetes as soon as possible. 

Peter's legacy will live on through the work that you have done, though the awareness you've raised here in this Senedd and throughout Wales. Diolch yn fawr iawn. Thank you.

Julie Morgan.

Thank you very much, Deputy Presiding Officer, for calling me to speak in this very important debate on the Petition Committee's report on the routine screening for type 1 diabetes in children and young people. Firstly, like everybody else, I'd like to thank my constituent Beth Baldwin for all the hard work she's put into getting this petition to the point where we're debating it now here in the Assembly. I know it's been a long hard road for her, and the tragic circumstances in which she lost Peter, who was just 13 when he died, I know, have been—. It's from that we are here debating this issue here today. I know that Stuart and Lia are also here, because this has been a huge effort by this family. I'm so glad that they're here in the public gallery today to hear us debating these very important issues. I hope these will be preventative—we will help prevent something happening that's happened so terribly to them. I'm sure that the Cabinet Secretary, when he replies, will agree that Beth and her family have shown amazing courage in campaigning on this issue. 

Peter had type 1 diabetes, but the diagnosis, as others have said, was missed by the GP and, by the time his condition had deteriorated so much that it was an emergency, it was sadly too late to save him. What Beth and the people at Diabetes Cymru and the Children and Young People's Wales Diabetes Network want is quite simple: they want any medical professional or anyone who comes into contact with an ill young person to stop and think, 'Do the symptoms point to type 1 diabetes?' I think Dai Lloyd raised that very strongly in his contribution. 

I know that Beth and the campaigners are pleased that the Government has accepted or accepted in principle all the recommendations in the committee's report. I think it's important to recognise that it is one of the most common chronic childhood diseases and its incidence is increasing. I think there is an average of one child per school in Wales that has this condition, and the number is rising by about 4 per cent each year, and rising more rapidly in children under five. Beth and the campaigners would like to see health visitors, physiotherapists, GPs and practice nurses carry out the routine simple finger-prick test to see blood glucose levels. At the moment, 25 per cent of cases of type 1 in children are diagnosed in an emergency. With more routine testing, I'm sure that we would all agree that the figure must decrease. 

They want to know that there are enough blood glucose testing kits for these people to routinely test unwell people, so we need to know that those kits are there, and I'm pleased to see that the Welsh Government accepts recommendation 3 of the report on this point. Yes, guidance about testing at the point of care has been issued, and this has been reiterated as part of the referral pathway, but who is tasked with monitoring the availability of blood glucose testing equipment, not just as a one-off but on an ongoing basis? Who will they report to, and will this information be publicly available? I don't know if the Cabinet Secretary would be able to answer those questions.

Do we know how many GP practices currently do not have the equipment they need to carry out the single test and analyse the results? I've heard anecdotal evidence that, even now, GP practices sometimes struggle to find the testing equipment. It may be in the back of a cupboard. Test strips may be out of date, or staff haven't done a test in such a long time that they're not confident in using the equipment. So, I think we've got to make absolutely sure—we've made such a lot of progress, but we've got to make sure that, practically, it is possible to carry out the test in the way that the campaigners want. 

So, the other issue is, in terms of when things go wrong, who is accountable? I think that, through this debate, through this very good report from the Petitions Committee, we have been able to highlight these issues that are so important, and I'd really like to end, really, once again by thanking Beth, thanking Stuart and Lia, for all that they've done for taking this cause forward—so, diolch yn fawr.  

As the chair of the cross-party group on diabetes, I'd like to thank the Petitions Committee and all those who were involved in the journey of this petition through the Assembly. I'd particularly like to pay tribute to the Baldwin family for their hard work, tenacity and dedication to such an important and very personal campaign. Beth and the family are watching from the gallery today, and I know that they feel it's been a huge team effort. You cannot underestimate the power of sharing your experiences of the devastating loss of Peter. You have shown such strength and courage throughout this campaign. We're all really proud of you, and Peter would be so proud, too. Like many others, I've been touched by the stories of children who have been saved because they were able to get diagnosis as a result of your work, so I thank you, Beth, and your family, for everything you've done in Peter's name. It's a really beautiful legacy.   

I'm glad that the Welsh Government responded so positively to the report from the Petitions Committee, and that the Cabinet Secretary has given the recommendations the consideration that they deserve. Type 1 diabetes is the most common autoimmune condition in the UK. it's estimated that around 19,000 people are living with type 1 diabetes in Wales. Many people live well with type 1 diabetes for many years. Countless people have also shown that type 1 is no barrier to living active lives, from individuals running marathons to Team Oarstruck from Caerleon rowing the Atlantic, the hardest rowing race in the world.

Key to living well with type 1 is good management of the condition, and this can only be achieved if the person knows that they have it. Diagnosis is absolutely critical. And yet one in four children in Wales are diagnosed with type 1 later than they could have been. I'm sure everyone here will agree that this number is too high. We know that there have been improvements within our health service. I've recently heard of work being carried out on a new reporting system that will ensure that lessons are learned from late diagnosis. By sharing information across teams, I hope that missed opportunities to diagnose earlier will be taken in the future. I've also heard of excellent research being done here in Wales on whether digital prompts in primary care could improve the rates of earlier diagnosis. I hope that this will be successful in supporting doctors in early diagnosis.

We can also be pleased that a new pathway has been rolled out across Wales, as stated in the written response from Welsh Government. I'd like to acknowledge the brilliant work being done by the Children and Young People's Diabetes Network in making this a reality. The implementation of the pathway will be key to its success, and I'm glad that the Cabinet Secretary has committed to seek assurances from all seven health boards that this is being adopted and that primary and secondary care will be working together on the delivery of the new pathway.

But, as ever, more can be done. I believe that we all agree that every child, every young person, deserves the opportunity to live a happy, healthy life, with or without diabetes. The 4 Ts campaign— thirsty, tired, toilet, thinner—to raise awareness of the symptoms of type 1, has been well received by healthcare professionals, families and schools, but no organisation, doctor or family can solve this issue alone. That's why I hope the Cabinet Secretary will again commit to working with health boards and other key organisations to ensure that the 4 Ts campaign is promoted in all appropriate settings.

There have been a number of studies looking at the effectiveness of awareness campaigns, and their findings suggest that the most targeted campaigns have the biggest impact. Simple messages can save lives, and today's petition is a call for action, and Wales can lead the way.

Thank you. Can I now call on the Cabinet Secretary for Health and Social Services, Vaughan Gething?

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.

Thank you. Can I now call on the Chair of the Petitions Committee, David Rowlands, to reply to the debate?

First of all, can I thank all the Members for their contributions? I must say that there is one theme that ran throughout each of your contributions and that's the availability of the equipment in order to be able to test for type 1 diabetes. 

Dai Lloyd brought his considerable experience, obviously, as a GP, to the debate and spoke of the necessity to test every child who presents with some or all of the symptoms. But it is true, and we must remember this, that any GP, throughout his lifetime, may only see a handful of type 1 diabetes patients present to him, although, of course, over the coming years, that's likely to increase. So, I must say that we have to not allow this debate to die or for any of the recommendations to slowly melt away. This must be an ongoing debate and an ongoing business of education with all GPs and front-line practice nurses as well.

Lynne Neagle, obviously, again, spoke about testing equipment and being there for primary care providers and also, of course, as all the contributors did, paid tribute to the Baldwin family. Again, Mike Hedges did that as well and also made the point of us making sure that the equipment and the knowledge are made available in our schools and colleges in particular. Janet Finch-Saunders was glad that the Cabinet Secretary had accepted and adopted many of our recommendations, but she said that many things are still not as good as they should be and that matters are not particularly improving at this moment. Julie Morgan, of course, who knows the family well, again spoke about their courage in bringing this matter forward and the work that they continue to do in order to raise awareness of this appalling infliction. Jayne Bryant again thanked the family for their strength and courage, and she spoke about children who already have been saved by the work, and I think the Baldwin family ought to take congratulations for the fact that what they're doing is already saving lives.

I'd like, now, to just speak about what the Cabinet Secretary has said on these matters, but I'd like to ask him: are further actions to ensure symptoms are asked about in primary care ongoing at this moment in time? And, were the NICE guidelines in place when this tragedy actually happened, because you seem to have placed a great deal of emphasis on NICE guidelines? And, whether he expects training to be provided to GPs alongside the new diabetes referral pathway. What places are in progress in order to diagnose the delivery—the progress on diagnosis in the diabetes delivery plan?

Llywydd, I very much hope that this debate and the petitions process as a whole have been a positive experience for Beth, Stuart, Lia and the rest of Peter’s family and friends. I hope that we, as an Assembly, have been able to help to support their drive to improve awareness of the symptoms of type 1 diabetes and its diagnosis. I want to wish the family all the best in their continuing fundraising and awareness-raising efforts on this issue and to thank them for truly honouring Peter’s memory in this way. Diolch yn fawr.

Thank you. The proposal is to note the committee's report. Does any Member object? No. Therefore, the motion is agreed in accordance with Standing Order 12.36.

Motion agreed in accordance with Standing Order 12.36.