We must all fight the deadly ignorance about Type 1 diabetes

Fiona Twycross AM writes about what needs to be done to fight the discrimination surrounding Type 1 diabetes.


Fiona Twycross AM is a Londonwide Labour Member of the London Assembly

To mark the recent World Diabetes Day, the London Assembly called on the Mayor to do more to increase awareness of the symptoms of Type 1 diabetes among children and young people, and ensure all parents can recognise the symptoms.

The frightening levels of ignorance about Type 1 diabetes leaves those children who suffer from the disease fighting a battle on two fronts.

If you speak to any of the 29,000 children in the UK with diabetes, you will hear how at least half have experienced bullying in school and not only by their classmates.

There are examples of teachers saying they can’t eat in class or sending them unattended to the school office when they are having a hypo.

They can also face being excluded from activities and school trips, and at worst, schools have been known to refuse admission to children with Type 1 because they (the school, not the child) can’t cope with a condition that requires injections during the day.

The level of ignorance about Type 1 diabetes means only 1 in 10 parents is able to recognise the symptoms of the disease. With only 2,000 people diagnosed with Type 1 diabetes annually, GPs rarely see children with the condition and so don’t necessarily spot the signs either.

Diagnosis can be confirmed by a simple finger prick test. Despite this, one in four children and young people are diagnosed with diabetes only when they arrive critically ill at A&E with diabetic ketoacidosis – a life threatening condition that requires urgent specialist treatment.

Increasing awareness of Type 1 diabetes is essential and will lead to more people being diagnosed early.

The campaign launched earlier this month by Diabetes UK, and highlighted by the London Assembly, aims to do this and prevent the trauma and long-term health implications of diagnosis at A&E.

Shockingly, young women with Type 1 diabetes are nine times more likely to die than women without diabetes due to largely preventable damage to their health. A five-year-old child diagnosed with the disease can show signs of damage that can lead to serious health complications by their mid-20s, including visual impairment, kidney disease, amputation, heart attacks and strokes.

It is essential the symptoms of Type 1 diabetes are promoted more widely among parents, schools and healthcare professionals because early diagnoses can help. Charities like Diabetes UK clearly have a role to play in promoting the conditions, but with relatively modest resources, they cannot do this alone.

Traditionally the NHS has played a role in health promotion with Strategic Health Authorities, taking a lead over wider areas. NHS London, for example, ran a major campaign on diagnosing Type 2 diabetes a few years ago with a London-wide campaign ‘Measure Up’.

While moving public health to local authorities is generally welcome, the localisation of health promotion contains a risk. There is a danger priority will be given to health issues with a greater number of sufferers than Type 1 diabetes. However, this is precisely why it is important for knowledge of the symptoms to be more widely known.

When I wrote the motion passed by the London Assembly earlier this month, my understanding was the London Health Improvement Board could play a role in ensuring this happens in London. The LHIB – which met for the first time last week and which has already been refused a statutory role – appears now not to have the remit or resources to carry out any substantial work on health promotion.

The Mayor could not tell me how much funding the LHIB will receive but is clear it is much less than anticipated previously and most health promotion funding is being devolved to Health and Wellbeing Boards.

It is not currently clear who will be responsible for providing a strategic overview on public health and ensuring gaps don’t appear. This matters because it is potentially children who will fall through the gaps.

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