Type 1 Diabetes (Young People)

Caroline Lucas Excerpts

Wednesday 30th April 2014 Westminster Hall

[Caroline Lucas (Brighton, Pavilion) (Green)]

It is a pleasure to serve under your chairmanship, Mr Havard. Like other Members, I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing such an important debate. It is interesting how much cross-party agreement there is on this issue—I hope that that clear message is reaching the Minister.

I shall be repeating some points that other Members have made, but first I want to say a little about a young constituent of mine in Brighton with type 1 diabetes, with whom I have been working closely. We have been focusing particularly on good practice support for young people in schools. As a result, the local authority in Brighton and Hove is now convening separate groups of parents, teachers and young people to talk through ideas. My constituent, Izzi, is especially keen to develop a system of mentors, where older pupils with type 1 can support younger pupils in school, particularly at stressful times such as transition or during exams.

Some of the proposals we have been discussing are not rocket science—they are very simple, but would make a huge difference. For example, young people should have a safe and pleasant place to go and inject. That place should not be locked, as sometimes such places have been; it has meant that young people have had to inject in the toilets. That gives the impression that people are trying to push the issue away. As many others have already said, we must address stigma, and one way to do that is to make injection far more normal and provide much greater support for it in schools.

As others have said, it is important to stress that type l diabetes is not just a medical condition. It can have severe psychological and educational implications and affect people in very different ways. Type 1 young people need to have medical and educational support tailored to their individual needs. Just because a person does not look ill, that does not mean that they are not juggling a vast number of factors to try to keep themselves well.

Izzi has warned that, increasingly, type 1 young people are being refused disability living allowance, despite the massive extra burden on them and their families to maintain their health. She had a DLA application turned down when she was 16, and it was obvious from the assessor’s comments that there was very little understanding of her condition and how it needs to be managed. For example, the assessor judged that Izzi’s age and the fact she has had her condition for many years meant that she was able to deal with taking her medication without help. Izzi very much wishes that that were the case, but when she is severely hypo or hyper, it simply is not.

After a great deal of extra work, she appealed against the decision and was awarded the lower rate of DLA for a further year—she had previously been on the middle rate. Many people would not have challenged that decision and might therefore be missing out on vital support. Izzi will still be only 17 when her DLA stops—not legally classified as an adult, but still supposed to be able to totally self-administer a potentially lethal drug several times a day, without any help or supervision—even when she is not able to concentrate because of high or low blood sugar levels. On behalf of many other type 1 teenagers who are or have been in the same position, she wants Ministers to understand that reality.

Izzi also wants to raise the issue of plans to scrap the national peer review programme, which the previous speaker mentioned. There are real concerns about the risk that that programme will end, as NHS England has committed funds only until September. Across the country, there is a huge difference in the provision of care for children with diabetes, in terms of both patient experience and outcomes. The peer review system provides important information and opportunities to help improvement. I would like to draw my remarks to a close by identifying a couple of areas in which peer review is important and working for children, and the benefits that it brings to families, as set out by the Families with Diabetes National Network.

Peer review measures the extent to which teams can provide 24-hour cover as prescribed under the best practice tariff. That cover is essential for families because it avoids expensive hospitalisations, and serious concerns have been raised where cover is inadequate. Peer review highlights the extent of paediatric ward staff training to ensure that children with diabetes who are admitted to hospital can be looked after safely. That is a huge issue for families, and the peer review programme has helped teams to understand better how to achieve ward staff training. Peer review also highlights the ongoing training of team members, ensuring that they are all trained to an appropriate level, which is key to the provision of good care for children.

Peer review measures the extent to which teams review patient feedback and take action accordingly. Families can help teams to improve by providing that feedback, and peer review ensures that it is both used and acted on. It also measures the extent to which teams provide self-management education to families. Self-management education is essential in keeping children out of hospital and enabling them to achieve good control and avoid complications.

Peer review measures the extent to which teams support children in school, which is an essential pillar of good self-management, and the programme has enabled teams to share strategies and documents and therefore to disseminate best practice. Finally, peer review examines arrangements for the transition to adult care—arrangements that, as we know, are key to ensuring that young people do not fall out of the system and develop complications at such a critical age. The peer review programme has encouraged teams to work together to address the issues relating to transition.

For all those reasons, along with the many others raised by Members this morning, I hope that the Minister can assure us that he will look again at peer review. There is real concern about it, as well as about the level of research funding, and I would like to add my voice to those who have said that the UK must do more research, particularly for type 1 diabetes.

In conclusion, I welcome the opportunity to have this debate and very much hope that it will increase awareness of the needs of young people with diabetes. There are more than 25,000 young type 1 sufferers in the UK, and, like Izzi in my constituency, they all deserve the very best chance.