Type 1 Diabetes: Infant Testing

Debate between Tom Gordon and Christine Jardine

Monday 9th March 2026 Westminster Hall

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairship, Sir Alec. I welcome the Minister to her place; the all-party parliamentary group for diabetes had a positive and constructive relationship with her predecessor, the hon. Member for West Lancashire (Ashley Dalton), and I hope that that will continue.

I am grateful to the petitioners and to the petition’s creator, John, who is in the Gallery. He has been tirelessly campaigning in memory of his daughter, Lyla. His courage in speaking out and pushing for change has brought national attention to the urgent need to improve the way we recognise and diagnose type 1 diabetes. Earlier today, a group of cross-party MPs and of health professionals and families handed in a petition to Downing Street on this matter.

About 400,000 people in the UK live with type 1 diabetes. That includes tens of thousands of children. It is most commonly diagnosed in childhood, but can develop at any age. Crucially, it cannot be prevented at the moment and is not linked to lifestyle. There is nothing a child or their parents could have done differently. Despite our understanding of the condition, too many people are still diagnosed only when they are already dangerously ill. Too often, the warning signs are missed.

As we have heard, the classic symptoms are known as the four Ts: thirst, tiredness, thinning, and needing to go to the toilet more frequently. They are well known and simple to check. A quick finger-prick test can measure blood glucose and confirm whether urgent action is needed, but too many families find themselves making repeated visits to healthcare professionals before a diagnosis is made. In many cases, by the time that type 1 diabetes is identified, the patient is already experiencing diabetic ketoacidosis. DKA is a serious and potentially life-threatening condition caused by dangerously high blood glucose levels and the build-up of ketones in the blood. It frequently requires emergency hospital treatment. More than one in four children in the UK diagnosed with type 1 diabetes are diagnosed when already in DKA. This is an issue of health inequalities, too. We know that among children under five, and among those from deprived backgrounds, the proportion can be even higher.

These are not just statistics. Behind every number is a child, a family and a moment of trauma that could all too easily have been avoided. Lyla Story’s case tragically illustrates that. In the days before her death, Lyla showed the classic symptoms of type 1 diabetes. Her parents sought medical help and she was seen by a GP, but the symptoms were attributed to another illness. Her condition deteriorated rapidly, and sadly she passed away after developing diabetic ketoacidosis.

Since I met John months ago, he has sent endless examples of other families across the country. The same story has rung true time and again. This is not just one example; it is emblematic of our current systemic failure. There is an urgent need to improve awareness among healthcare professionals and ensure rapid testing when symptoms appear. They must be tret as a priority. NICE guidelines already state that children suspected of having type 1 diabetes should be referred immediately to a specialist paediatric diabetes team, but we know that, in practice, signs are sometimes missed or not acted on quickly enough. Ensuring that every GP practice has access to relevant glucometers and that the staff are confident about recognising the four Ts is one of the most simple and effective ways we can reduce those missed opportunities. Education and training can make a real difference. At a roundtable held by the APPG for diabetes earlier this year, we heard how quality improvement work in Cardiff has demonstrated that targeted education for primary care teams can significantly reduce emergency diagnoses.

Alongside improving diagnosis, we are entering a new and exciting phase in our understanding of type 1 diabetes, with the possibility of identifying the condition before symptoms even begin. Research has shown that the immune attack that eventually leads to type 1 diabetes produces autoantibodies in the blood long before symptoms appear. Those markers can be detected through screening, and studies such as ELSA have demonstrated that childhood screening is feasible and can identify children at risk before they become unwell.

[Christine Jardine (Edinburgh West) (LD)]

It is a pleasure to serve under your chairship, Sir Alec, for the first time. My hon. Friend has touched on training and the need for awareness. One issue is that very often even people with type 1 diabetes, because of the lack of awareness, are not aware of the symptoms as they begin to react or their insulin is very low. Does he agree that what we also need is a general awareness of type 1 diabetes among the public?

[Tom Gordon]

My hon. Friend is a passionate advocate of diabetes awareness. I completely agree that we need to do more to raise those symptoms with the general public. Everyone knows the key signs of some health conditions—heart attacks or strokes, perhaps—but sadly, type 1 diabetes is not one of those. We can do more in the House to put the issue at the front of the public’s mind; I am optimistic that we can do that across parties, given the diversity of colleagues in this Chamber. Screening offers enormous potential. It will allow families and clinicians to monitor the condition closely, prepare for treatment and, we hope, avoid the trauma of an emergency diagnosis.

I turn to some personal experience. When I was just 13, we were on a family holiday in Turkey. My little sister, who was nine at the time, collapsed by the pool. People do not often think much of it if a growing child loses and gains weight or is thirsty, particularly when abroad in severe heat. My mum had no idea that my sister was a type 1 diabetic; only when she collapsed by the side of a pool and was rushed and blue-lighted to hospital in Turkey did we find out that she was critically unwell and experiencing DKA.

I will never forget that holiday. Fortunately for my sister, everything turned out okay. We got her back to the UK and got her the support that she needed, but it was an incredibly frightening experience for our family and a stark introduction to how suddenly type 1 diabetes can present when it goes undetected. That is one of the reasons why this issue matters deeply to me, and part of the reason why I went on to study biochemistry and a master’s in public health. What can we do? I will turn to what should happen next, but first I encourage any colleagues in the Chamber who are not already members of the APPG for diabetes to join.

I want to press the Minister about a number of areas: first, on awareness of the four Ts, which we have already heard about but needs strengthening across the health system. Training for healthcare professionals, in particular those who work in primary care, should ensure that symptoms of type 1 diabetes are recognised immediately and acted on. Secondly, finger-prick blood-glucose testing should be standard practice whenever a patient presents with symptoms suggestive of type 1 diabetes. NICE guidance should make that expectation explicit, not simply implied.

Thirdly, every GP practice should have the equipment ready to carry out such tests quickly and with confidence. Fourthly, awareness—including of the four Ts—should extend beyond the healthcare system to the personal child health record, or red book, and digital resources for parents, which would help families recognise those warning signs and seek testing earlier. Fifthly, there should be stronger oversight to ensure that learning takes place when diagnoses are missed, including a clearer role for the Care Quality Commission and national improvement initiatives, too. Finally, the NHS should continue to explore what role screening programmes could play in future. Research under way, such as that of the ELSA study, will be crucial in building the evidence needed to support any future national screening programme.

Type 1 diabetes cannot currently be cured, but deaths from undiagnosed type 1 are preventable. Through better awareness, faster testing and continued research, we can ensure that fewer families experience the trauma of delayed diagnosis. If we ended up with a Lyla’s law, we would be honouring the memory of children such as Lyla and the determination of family members such as John, who are campaigning so powerfully for this change.

Oral Answers to Questions

Debate between Tom Gordon and Christine Jardine

Thursday 17th July 2025 Commons Chamber

[Tom Gordon (Harrogate and Knaresborough) (LD)]

13. What steps he is taking to support the hospitality sector.

[Christine Jardine (Edinburgh West) (LD)]

19. What steps he is taking to support the hospitality sector.

[The Parliamentary Under-Secretary of State for Business and Trade (Gareth Thomas)]

We recognise the vital role hospitality plays in driving growth and strengthening all our communities. That is why we have committed to permanently lower business rates for the sector from 2026-27 and announced a hospitality fund to co-invest in projects that boost productivity and help community pubs adapt to local needs. It is also why we have launched an industry-led licensing taskforce to reduce red tape and other barriers.

Terminally Ill Adults (End of Life) Bill

Debate between Tom Gordon and Christine Jardine

Friday 16th May 2025 Commons Chamber

[Tom Gordon]

I will make a little progress, as I was in the middle of a quotation. It continues:

“Unless you are actually affected by something as desperate as MND, you cannot understand what it really means to have such an option.”

My constituent is right. We can debate legal safeguards, ethics and precedents all day in this Chamber, but for those who are living with devastating diseases, this is not theoretical; it is personal, it is urgent and it is real.

[Christine Jardine]

This is a very personal one for me, because much of my motivation for supporting the Bill comes from having watched a member of my family die of motor neurone disease. Although perhaps it would have been preferable if motor neurone disease and other degenerative diseases could have been included, I accept that we do not want to go down the slippery slope. However, there is a difference between extending the Bill to degenerative diseases such as motor neurone disease and extending it to other conditions. Perhaps we could consider supporting that, because I would not want anyone to go through what I witnessed, without the choice to end it without going through more pain.

Accountability for Daesh Crimes

Debate between Tom Gordon and Christine Jardine

Thursday 15th May 2025 Westminster Hall

[Christine Jardine (in the Chair)]

We begin with the Select Committee statement. Tom Gordon will speak on the publication of the Joint Committee on Human Rights’ second report of the Session “Accountability for Daesh crimes” for up to 10 minutes, during which no interventions may be taken. At the conclusion of the statement, I will call Members to put questions on the subject of the statement and call Tom Gordon to respond to these in turn. Questions should be brief, and Members may only ask one question each. I remind Members that they should bob if they wished to be called to ask a question.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairmanship, Ms Jardine, and a privilege to speak on this important statement on the Joint Committee on Human Rights report “Accountability for Daesh crimes”. The report represents the shared conclusions of a cross-party group of parliamentarians from both Houses, a rare show of unanimity in one of the most disturbing human rights failures of our time.

Let us begin with the facts. Between 2014 and 2017, Daesh—also known as Islamic State—waged a campaign of brutal violence and terror across Syria and Iraq. They targeted ethnic and religious minorities, including Christians, Muslims and particularly the Yazidi people, with a clear intent to destroy them as a group. Thousands of Yazidis were executed. Women and girls were abducted, raped, sold and enslaved, and many remain unaccounted for. Children were indoctrinated or taken for use as child soldiers. These were not isolated atrocities. They were systematic and intentional. They were acts of genocide, crimes against humanity and war crimes.

In 2023, the UK Government formally recognised that Daesh had committed genocide against the Yazidi people. That recognition matters, but recognition without justice is not enough. The uncomfortable truth is that nearly 3,000 women and girls were taken by Daesh and that, while a number of UK nationals were involved in these crimes and some have since returned to this country, not a single one of them has been prosecuted in the UK for international crimes such as genocide. Only around 32 returnees have been prosecuted for terrorism-related offences. Although it is welcome that those prosecutions have taken place, they fall short of the accountability that the scale and the nature of these crimes demands.

Let me be blunt: it is a stain on the UK’s human rights record that we have not prosecuted a single individual for some of these crimes, despite having the legal tools and the moral obligation to do so. Other countries have stepped up; in Germany, several Daish perpetrators have been successfully prosecuted for war crimes and genocide. There is no reason the UK cannot do the same, except for a failure of political will and legal infrastructure. Our report makes a serious of clear, practical recommendations that would begin to put that right.

First, we call for a reset in the UK’s approach to investigating and prosecuting international crimes. The current emphasis by UK law enforcement is overwhelmingly on terrorism offences. While that focus is understandable, it is currently insufficient. Genocide, war crimes and crimes against humanity are distinct crimes under international law and must be treated as such. The Government must develop a strategic framework that enforces and ensures that law enforcement, intelligence and prosecuting agencies work together to gather the necessary evidence to bring these cases to court. This is not just about justice for victims abroad; it is about our credibility at home too. British citizens should not be able to participate in genocide abroad and return to the UK without facing the full weight of the law.

Secondly, we call for a change in the law. At present, under the International Criminal Court Act 2001, the UK can only prosecute individuals for international crimes such as genocide, war crimes or crimes against humanity if they are UK nationals or residents. That is a major gap in our legal framework. Those are not crimes that should be subjected to jurisdictional loopholes. We urge the Government to amend legislation, specifically the Crime and Policing Bill currently before Parliament, to enshrine universal jurisdiction for those crimes in UK law. Doing so would mean that anyone, regardless of nationality or residency, could be prosecuted in the UK courts for the worst crimes known to humanity. That is not a radical proposal, but a long-overdue alignment of our legal system with our moral and international obligations.

Thirdly, we raise serious concerns about the deprivation of citizenship. The Government have used their powers to strip some individuals, particularly those suspected of involvement in terrorism abroad, of British nationality. We are concerned that in some cases the power has been used as a substitute for prosecution—in effect, removing people from our jurisdiction without holding them accountable for the crimes that they have committed. We call for greater oversight of the power. It should be subject to independent review and transparency mechanisms. Citizenship deprivation should never be used to avoid prosecution, nor to wash our hands of British nationals involved in the most serious international crimes.

Fourthly, we cannot ignore the humanitarian and security crisis in Syria. There are still UK nationals, including children, detained in camps that are overcrowded, dangerous and inhumane. Children face the daily risk of malnutrition, disease and violence. The camps have been described as, in effect, open-air prisons. They are not places for recovery or rehabilitation. The UK cannot simply look away; these are British citizens, many of whom are minors. Some of them were taken to Syria by parents, while others may have been born there. None of them should be condemned to a life of statelessness or radicalisation. We call on the Government to identify the number and status of those children, and to bring forward proposals for their resettlement and care.

Where British adults in these camps are suspected of involvement in Daesh crimes, the UK must take all steps to prosecute them here at home, in accordance with due process and the rule of law. The failure to prosecute those crimes sends a dangerous message to perpetrators, victims and the world. It tells perpetrators that they can get away with genocide if they are clever about which passport they hold, it tells victims that their suffering does not matter unless it happens within our own borders, and it tells the world that the UK is willing to tolerate impunity for the worst atrocities committed in modern times.

The Joint Committee on Human Rights believes that Britain must do better. Justice delayed is justice denied, and impunity is injustice enshrined. Let us be clear: the UK has the legal tools, the institutional capacity and the moral responsibility to act. What we need now is political leadership from the Government.

I thank everyone who gave evidence to the Joint Committee, whether written, in person or in any other form. I also thank those people who were brave in speaking out and sharing the situations that they and their families had been through. I acknowledge the work of the Committee support staff throughout this inquiry. I commend the report to the House and urge the Government to implement its recommendations without delay.