Type 1 Diabetes (Young People)

Alison McGovern Excerpts

Wednesday 30th April 2014 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

May I take the usual step of thanking you for chairing this sitting, Mr Havard? I know that that is something of a ritual, but on this occasion I am sincere. You may be aware that I was originally on the list to chair this sitting, so you have saved me the embarrassment of having to congratulate myself.

I begin with some acknowledgements. I am particularly grateful to the staff and patients at the diabetes centre at Aintree university hospital and the specialist diabetes services team at St Helens and Knowsley. I also thank the young people with diabetes who took the time to speak to me; the Juvenile Diabetes Research Foundation; Diabetes UK; Diabetics with Eating Disorders, known as DWED; Circle D; and Dr Mike Merriman in my constituency.

I sought this debate on behalf of children with type 1 diabetes in the UK, but I should point out that the condition does not affect children only. There are 400,000 people of all ages with type 1 diabetes in the UK and, currently, 35,000 children and young people have diabetes, 93% of whom have type 1 diabetes. It is important that we understand the difference between type 1 and type 2 diabetes, because, all too often, the two conditions are dealt with in the media as though they were one and the same thing. For example, a prominent businessman, Jim Ratcliffe, was recently quoted in The Sunday Times as saying:

“Childhood diabetes didn’t exist when I was growing up. It was an old man’s disease. But now lots of kids have diabetes. They are eating so much sugar that by the time they are 16, the pancreas is giving up the ghost”.

That is quite simply a misunderstanding of type 1 or childhood diabetes. Type 1 diabetes has absolutely no connection to dietary habits or a lack of exercise; it is an auto-immune condition and, as such, cannot be prevented. All people who suffer from type 1 diabetes have to deal with the consequences, which, for the most part, are inescapable and unremitting. A daily battle must be conducted to maintain blood glucose level within the medically safe range, balancing food and insulin intake, while taking into account physical activity, stress levels and temperature.

Young diabetics can take up to eight daily insulin injections and often have to perform invasive blood testing even more frequently. Yet according to research by JDRF, even those who stick rigidly to the prescribed regime will fall outside the medically safe range on more than three occasions in any 24-hour period.

Not staying within safe blood glucose levels has consequences. In the short term, high levels, which are known as hyperglycaemia, at the very least cause fatigue, and continued high levels can lead to diabetic ketoacidosis—known as DKA—which is a potentially fatal condition. Longer-term consequences include heart disease, kidney failure, neuropathy, blindness and amputations. Low blood glucose levels, known as hypoglycaemia, cause dizziness, incoherence and potential loss of consciousness and are often followed by severe headaches.

Blood glucose levels can alter dramatically, and apparently inexplicably, at any time of the day or night and require immediate attention. According to research undertaken by the National Paediatric Diabetes Audit, 85% of children and young people aged over 12 with diabetes have blood glucose levels higher than the recommended targets. That is perhaps unsurprising, because only 6% of those in that sample received the recommended care, services and support to which they were entitled.

Some children are diagnosed with diabetes in infancy, or when they are too young to take responsibility for managing their condition. Inevitably, the responsibility must be taken by family members, most commonly parents. For many families, having a child with type 1 diabetes affects them all and many adjustments have to be made to support that young person. As one young type 1 diabetes sufferer told me recently, until she was 18, she was almost entirely dependent on her mother monitoring her blood glucose and ensuring that she injected the right amount of insulin at the right time.

In advance of this debate, people contacted me about difficulties they have experienced with the Department for Work and Pensions and the disability living allowance system. Some of the problems raised arise from the fact that the DWP does not fully understand the complex needs of young people with type 1 diabetes. I would be grateful if the Minister raised that with the relevant Minister at the DWP to see whether that could be satisfactorily resolved.

Two young type 1 diabetics, Lauren and Nicole, both told me that they had experienced bullying at school as a result of their condition. Nicole, who is 16, states that she

“frequently experienced bullying because of my diabetes and because everyone thought it was because I was fat”.

Several young people have commented on the embarrassment that they feel at having to inject insulin in public. In some cases, they have been referred to as drug addicts, or been asked not to inject or test their blood, as others find it offensive.

I made two visits recently to the diabetes centre at Aintree university hospital and the specialist diabetes services team at St Helens and Knowsley Teaching Hospitals NHS Trust, both of which provide outstanding services for type 1 diabetics. They have a different range of specialisms to call on beyond the use of nurse specialists and diabetologists. For example, they can refer to psychological or, where appropriate, psychiatric services.

[Alison McGovern (Wirral South) (Lab)]

I pay tribute to the work that my right hon. Friend has done in this area. Before he moves off the stigma issue, does he agree that we need to think about how we can raise awareness among young people? Does he also agree that social media organisations need to be responsible but not afraid about stigma arising from the use of needles and so on? We need to talk frankly and honestly about type 1 diabetes and its consequences for young people, so that those with the condition do not feel in any sense as though they must hide away.

[Mr Howarth]

I am grateful to my hon. Friend for that intervention. She is quite right to say that social media has an important role to play. I will say more about that shortly, but one example was drawn to my attention where Facebook removed an image of someone injecting on the grounds that that was offensive. That is offensive, but not in the way that it thought. I will say something more positive about how social media can be used in a few moments, but it is important that more people understand exactly what we are saying.

I was talking about psychiatric services. On a national scale, psychological support is not necessarily integrated into the diabetic service, and the practitioners are therefore unlikely to have sufficient understanding of diabetes. Psychiatric services are even more difficult to access, and I am told that patients can wait up to two years for an appointment. In some cases, that is a matter of life and death. The diabetes attitudes, wishes and needs survey, known as DAWN, published in Diabetic Medicine, interviewed 15,000 people in 17 countries and found that people with diabetes are more likely to suffer from depression. Those services are therefore very important.

I want to say a little about young people with type 1 diabetes who also have an eating disorder. According to the charity Diabetics with Eating Disorders, as many as 40% of young women between the ages of 15 and 30 admit taking insulin as a means of achieving weight reduction. The phenomenon sometimes referred to—although it is not a medical term—as diabulimia is increasing. Rapid weight loss is achieved when diabetes is left untreated, but the consequences can be catastrophic. DKA, a potentially fatal condition where the body turns on itself for energy, rapidly develops. Even if it does not prove fatal, it can result in serious health complications.

Diabulimia is difficult to diagnose and there are no current NHS guidelines on how to deal with the issue. Young people can be treated for their diabetes and for an eating disorder, but there is no integrated thinking to cover the two elements of care. Yet the treatment for a diabetic with an eating disorder is quite different from that for a person without diabetes. DWED has provided an example of a young woman who was admitted to a unit dealing with eating disorders, where no insulin needles were available and where the patient was fed via a tube without any insulin being administered. That exacerbated the problem that the unit was supposed to be treating.

There is a clear need for a more integrated service, with mental health professionals who have a knowledge of diabetes. A further and tragic example from DWED illustrates the point well. Jane, the mother of Rhys, a young man who was suffering from diabulimia, repeatedly requested that he be assessed psychiatrically. She did so every time her son was admitted to A and E suffering acute DKA, which happened on several occasions. She repeatedly raised it with the diabetes clinic and with the community mental health team. Unfortunately, her pleas were ignored, despite her saying that she was terrified that she would find her son “dead in bed”, and her son lost his battle with diabulimia on 25 July 2009. The ombudsman concluded that

“had a more coordinated and holistic care plan been put place it might have resulted in a different outcome.”

Jane has been fighting for recognition since 2009, and says that there was never an investigation into why her son died, which she attributed to his mental health problems. That was another complaint upheld by the ombudsman.

There is a serious need for a much more integrated service, so that all aspects of the treatment of type 1 diabetes can be dealt with together. There must be greater investment to ensure that emotional and psychological support becomes an accepted and routine part of management for all children with diabetes and that appropriate services are in place. Incorporating psychological services with routine clinic visits would avoid much of the stigma associated with treatment for mental health problems. In addition to regular clinic attendances, young diabetics require separate appointments for special eye checks and chiropody. Those should be available under one roof in an effort to improve the care achieved.

I am grateful that the urgent need to improve access to and integration of services is now being recognised with the introduction of the best practice tariff for paediatric diabetes. From April this year, the standards included in the best practice tariff are mandatory for all paediatric diabetes units, and the tariff has been extended to cover in-patient care, which will hopefully incentivise lower admission rates. However, I would argue that the best practice tariff should be extended to include all young patients up to the age of 25. Each young person is different, and transition from child to adult services must happen at a stage and time appropriate to them. The current cut-off for the tariff is 19, but the available data suggest that that is too soon, because 25% of all hospital admissions for diabetic ketoacidosis involve young people aged 16 to 25; the annual cost is £5.3 million. Extending the best practice tariff to 25 would provide an opportunity for better alignment of the service with the needs of young people.