After a morning spent opening the eyes of MPs to quite how big a deal Type 1 diabetes really is, the JDRF Type 1 Parliament moved on. The afternoon session was question time with a variety of clinicians, politicians, researchers and civil servants.
Four areas of debate really stood out for me, and they all came to a common conclusion:
How can we help more people get access to pumps?
There was general agreement amongst the clinicians on the panel that some Drs remain sceptical about the benefits of pumps and this is not a good thing. There’s hope that the insulin pump network of 270 interested clinicians will help to raise the profile of pumps in the medical community. But patients can make a difference too – remember this, you’ll hear it again – by challenging the dinosaurs and demanding pump services where they aren’t available.
They shared some interesting stats, which left me thinking our policy situation is average and our implementation of that policy is poor. NICE says we should have 15% of T1 adults and 25-30% T1 kids on pumps. Given we currently have about 5% of type 1s on pumps, we’re a long way off that. And even if we hit those pretty low targets, we’ll still be way behind countries like USA and Germany where over 30% are on pumps.
There’s a long way to go, and patient pressure is needed to keep driving the change. A great point from the clinicians was that when we are pushing for pumps, or other treatments, we need to be sure the correct training comes with it for clinicians and patients so that we get maximum benefits from the pump – no point in having a great tool if no one knows how to use it.
What can we do to ensure we can benefit from the artificial pancreas?
It was generally agreed that research into the artificial pancreas is exciting, but when it comes to getting any of that research into practice the panel thought that patients are the key (heard that before?). Patients need to be banging on the doors of politicians, clinicians and commissioners to make sure they know what we expect from their services.
Nicola Strother Smith, National Director for NHS Diabetes said that part of her role was to make sure new treatments are rolled out and best practice is shared. This is good to know, but alarms me given the pitiful speed at which we’re rolling out pumps and CGM. If we’re simply going to do the same again with any other new treatments, we seem to be heading for dangerous ground. It puts me in mind of Einstein’s definition of insanity – doing the same thing over and over and expecting a different result.
What effect will the new health and social care bill, including GP commissioning have on diabetes care?
In short, your guess is as good as anyone else’s on this one. But there was consensus on a couple of areas:
• Type 1 diabetes needs to be defined as a specialist area to be commissioned separately from Type 2
• Patient groups like JDRF, Diabetes UK, INPUT plus local user groups have an important role to play in setting out what standards of care are required, so that the people with the money are commissioning the right type of care (see, us again).
• If local teams aren’t able/willing to provide some of the services required, the commissioners would be able to contract with providers outside the area to deliver a particular service – what sprung into my mind was that dinosaur clinicians refusing to do pumps could be more easily circumvented as another hospital would be paid to deliver that service to you instead.
Can we please have more money for Type 1 research?
In short, no. Everyone was in violent agreement that we need to sort out Type 1, but there was a lot of buck passing when it came to whose job it was to do it.
• Diane Abbott MP, shadow health minister said it was clear that something needed to be done on the issue and that politicians respond to pressure, so we should keep pushing.
• David Willetts MP, minister for science said that the more charities can keep funding researchers in the diabetes field, the more researchers there’ll be to submit more high quality applications for research funding and diabetes should therefore get a bigger portion of the existing research budget.
• Sharmila Nebhranjani, chief exec of the Association of Medical Research Charities said that while charities can do a lot, they need the government to help speed up clinical trials and get research into practice.
• And the government will only do that if they’re pushed.
Which brings us back round to the patient.
What I took away from the debate was a very clear view that if we want to improve diabetes care and research, we need to take the lead and start acting like a true customer of the service. And why not, we’re the ones who want it and have most to gain from it. People are behind us, but they need us to be vocal in our requirements, locally and nationally, to make change happen.
It’s down to us chaps.