Type 1 Diabetes (Young People)

Steve Rotheram Excerpts

Wednesday 30th April 2014 Westminster Hall

[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.

[Steve Rotheram (Liverpool, Walton) (Lab)]

My right hon. Friend is making a powerful speech on an issue close to his heart. I hope that hon. Members will know his family circumstances. He is raising an important matter; there is a need to inform a much wider audience, not only so that everyone will be more aware of problems and issues to do with type 1 diabetes, but to inform people with the condition who believe they can manipulate their insulin intake for one reason or another. Does he believe that more should be done to highlight the problems that can arise when people do not stick rigidly to their insulin intake regime?

[Mr Howarth]

My hon. Friend makes his point well, in support of my argument, and I am grateful.

One in four children are diagnosed with type 1 diabetes when they are already in DKA, and the rate is even higher for children under the age of five. A number of clinicians I have met recently have advocated the removal of barriers between primary care and specialist teams, arguing that primary and secondary care teams should be sharing their expertise with one another in an attempt to close the skills and knowledge gap. In Merseyside, for example, specialist nurses have been working as mentors in practices to support primary care development and tackle deficits of knowledge, skills and confidence. Education is a major component of the improvement of care and outcomes. In many European countries, diabetes-specific training is mandatory for health care professionals who provide paediatric diabetes care. That is not the case in the UK. Although there has been a huge amount of work in the past five years to improve education for health care professionals, investment is needed to ensure that all paediatric units can access nationally standardised and accredited training.