JDRF Type 1 Parliament: It’s down to us, chaps

By | 27 April, 2012
Westminster, from the giant's point of view

Westminster, from the giant’s point of view

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.

21 thoughts on “JDRF Type 1 Parliament: It’s down to us, chaps

  1. brian

    @Alison ‘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.’

    From my perspective, and I understand that this may not be everyone’s, if the clinician isn’t up to speed then s/he has two choices get there pdq or get another job – pumps are not new technology. My health is far too important to have less than optimal care from someone who can’t be bothered to keep up to speed.

    I would be saying this to the Hospital Medical Director who has ultimate managerial responsibility for the service provided and the authority to take action.

    From my experience this approach works.

    Reply
    1. Alison Post author

      I’d agree with that. But it takes someone strong in every area to make that happen. Probably the type of people who read ShootUp are the types who can really drive change, the question is, can they be bothered?

      Reply
      1. Dave

        I can! I’ve received a reply from my MP about the failure of my PCT to provide a Dafne or equivalent. He wasn’t aware of the obligation but has now asked the Chair of my PCT for an answer.

        It is up to the clinician’s to be up to speed but as patients/customers we must be the ones to challenge them and their support/funding network to provide the care we are entitled to and require.

        Thank you for feeding this all back to us Alison.

        Semi-rhetorical question time: I wonder if an independent Scotland would approach this any different?

        Reply
        1. Tim

          Gah! Don’t mention an independent Scotland – it’d be a disaster!

          Scottish healthcare is in some ways good (free prescriptions for all) and in some ways bad (pump provision is even worse than in England and Wales) but it tends to take it leads (or be slightly in front of) England and Wales; so I’m not sure it would be all that different…

          Reply
          1. Dave

            We’ve discussed this before; free prescriptions for all is paid for by reduction in provision of other services.

            I doubt in the short-term it would be much different but over time differences would appear naturally.

            FREEDOM!

            Reply
    2. Tim

      I agree, but this approach can also be complimented by a “grass roots” style of action. Lots of well-informed diabetics asking for / demanding pumps and better equipment is better than no ill-informed diabetics not asking for equipment.

      There’s room – and a need – for both pioneering ‘thrusters’ and more general ‘grass roots’ pressure.

      Reply
      1. brian

        I beg to disagree.

        All that is needed is one ‘pioneering thruster’ to break the mould. The grass roots get the improvement by default because the clinic policy/staff has changed.

        The problem with a multiple grass roots approach – is that you get ‘nice’ people involved who dilute the effort and lose the focus -you need to be focussed and effective rather than nice.

        Reply
        1. Dave

          But for the thrusters and rooters you actually need someone to do that. I can’t identify a single thrusting individual in the country at the moment but actions like Wednesday can make a difference.

          I see the T1 Parliament as a step in the right direction but it needs to continue and if we all fight our corners with consistent messages and action things will change.

          Reply
          1. Tim

            If only @Teloz was around, I’m sure he would suitably lower the tone with all this talk of thrusting and rooting. Fn’aar fn’aar!

            Reply
        2. Tim

          ‘Grass roots’ doesn’t necessarily equate to ‘nice’. Pressure is pressure and death by a thousand cuts can be just as effective as one fatal stab – to use a rather odd analogy.

          Reply
          1. Alison Post author

            Pressure is pressure, but it has to be effective otherwise you end up with everyone agreeing that everything is rubblish but no one doing anything about it. “What I’ve seen a lot of over the years is:
            Patient: “we need more x”
            Dr: “oh, but poor me is too busy to give x, I’m so overworked”
            Patient: “poor you, sorry, I’ll stop bothering you and go home to watch my own feet rotting off”.
            Where it works is when the patient challenges and says “Let me speak to the PCT to try and get this moving then so we can help you solve the problem”. And then keeps the pressure on.

            Reply
          2. Tim

            ‘Grass roots’ doesn’t necessarily equate to ‘ineffective’ or ‘giving up at the first hurdle’. If you have a combination of pioneers and a mounting pressure from lots of people then resistance is futile.

            Reply
          3. brian

            A thousand cuts takes far too long. Time is on the side of the health service they gain everything by procrastination – you need/want the improvement yesterday.

            My philosophy is always exert minimum effort to achieve the objective; that way you have the energy to go the distance. Ask for what you want – if you get it end of story. If you don’t get it escalate immediately. Follow that loop until you get a result.

            Typical escalation hierarchy
            Doctor
            PCT Diabetes lead
            PCT Chief Ex
            PCT Chair
            MP & Press
            Minister for Health

            Reply
          4. Tim

            If I post something two weeks after your comment, does that mean I get the last word? If so, then grass roots pressure is worthwhile as well as pioneering people. So there! 🙂

            Reply
          5. brian

            Last word !! I don’t think so. 😉

            Either method will work – just that motivating grassroots is not always possible. You will get the reply from a lot of people ‘ I don’t want to upset the doctor – it may affect my care ‘ (Been there). Too right it will affect your care – but not negatively I suggest.

            At the end of the day its horses for courses and what the individual feels content with – the important thing is to take one route or the other rather than just sitting there, otherwise care does not improve.

            Reply
  2. Paul

    @alison if nothing else comes out of it I find this positive!

    • Type 1 diabetes needs to be defined as a specialist area to be commissioned separately from Type 2

    Reply

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