Show me the money

By | 27 July, 2009

If my inbox is anything to go by, how to secure NHS funding for insulin pumps and/or CGMS is a bit of a hot topic at the moment. There aren’t any magic answers, and personal experience taught me that tenacity and perseverance were pretty key to winning the battle, so for what its worth, here are my thoughts.

Understand the product – what is it that you want and why? How will you use this kit to improve your control or your quality of life? Be clear in your own mind about the benefits to you. Speak to the local rep – could you maybe trial the CGMS for a week to see if you like it and if it makes a difference to you? Take a look here for what I think are the main benefits to me.

Understand the market – what guidelines are out there? For pumps, INPUT have a great summary of the guidance.  For CGMS, there is very little guidance out there so you’ll probably need to fight on an individual basis. Medtronic have a summary of what little guidance exists.

Get your healthcare team on side – if your consultant is vehemently anti-pumps I’d recommend you find a new one. Try INPUT to find out who in your area has a good reputation for supporting pump use.

If your diabetes team just need a bit of gentle persuasion, show them the evidence. The download-able marketing literature from Medtronic covers the basics and quotes some of the major research projects that prove the benefits of CGMS. If you want more detail, try here for a reasonable summary of the research.

Use the suppliers – at the moment there’s only Metronic who provide CGMS in the UK. Contact them and ask to speak to your local rep. See if they know of any Drs in the area who are pro CGMS. When you know which clinic would suit you, head down to your GP and explain why you’d like to be referred for your diabetes care to that particular clinic.

The Dr says its too expensive – “Every time I have brought up continuous glucose monitoring with my diabetes nurse, she has said there is no way the NHS would cover it (no point even trying, apparently)”. To be blunt, it isn’t the job of your Dr or nurse to decide what the NHS will and won’t fund. Their job is to work with you to decide what is clinically the best treatment for you. Your local primary care organisation decides what they will and won’t fund, based on NHS guidelines or on an individual assessment of your case.

With your healthcare team on side, you now need to get financial approval. In the UK this will come from your local primary care organisation (PCO) – basically the NHS body who use our taxes to commission healthcare from hospitals and other providers on our behalf – in England and Scotland they’re called Primary Care Trusts (PCTs), Wales have Local Health Boards (LHBs) and Northern Ireland have Health and Social Services Boards (HSSBs). So we don’t lose the will to live amongst the complexities of the NHS, from now on I’ll call them PCOs.

If they agree that what you’re asking for is medically necessary, your Dr should write to your PCO to request that they fund the treatment. Ask for a copy of this letter, that way you know who its gone to and can chase it directly rather than via your Dr.

Personal experience showed that it took my PCO 6 weeks to respond to a letter. If I took that long at work to respond to a letter, I’d be sacked. I now give the PCO 2 weeks to respond, and then give the addressee of the letter a gentle nudge via phone or email. “I’m just calling re X to check you’ve got all the information you need” is a good opener – it brings it to their attention and means you get to know early on if they need more info.

Question, question, question. Without wanting to tar everyone with the same brush, we do seem to have a culture of prevarication in the NHS and a desire to do anything other than actually make a decision. Don’t be afraid to ask questions. Do they have everything they need to make a decision? If not, what else do they need? When can you expect a decision? Who will make the decision? What criteria will they use? What’s the appeals process?

Have your evidence – you want this, so make it as easy as possible for them to say yes.

Are there any NICE guidelines? If so, be clear about what they are and how you meet them. If there aren’t you need to point out this is not a general policy decision they’re making for everyone in the PCO area, this is something they should decide based on the merits of your case.

What are the consequences of not funding this request? eg severe hypos impacting on your ability to work, fear of night-time hypos as you live on your own. If you’re a woman, talking about the impact of poor diabetes control on any imminent planned pregnancy soon gets attention.

I felt I was being fobbed off and generally ignored when I applied for funding, so I went straight to the top and emailed the Chief Exec, cc my local MP. I explained the issue and that I felt I wasn’t getting a good quality service. The Government promises patient choice within the NHS, but I felt my PCO wasn’t making appropriate efforts to enable this.

There aren’t any simple answers to getting funding for CGMS, it is a battle but as more people fight that battle it will get easier. To summarise, here are a few things that I think are important:

  • Be clear about what you want and how it will benefit you in the short and long term
  • Get the support of your medical team – if they won’t support you, consider finding a new team
  • Gather the evidence to show that what you’re asking for actually works – if you’re struggling, ask the suppliers to provide you with the evidence – this is their product, they should be able to point you to the research that shows that it works
  • Keep the pressure on – you want this funding so you need to drive it through the system. Find out who is dealing in your PCO and speak to them regularly. Understand the process and always know what the next step is. 
  • If you’re not getting anywhere, escalate. Writing to the Chief Exec and getting your local MP on board generally helps to clear any blockages. 

That’s what worked for me. If there’s anyone else out there with pearls of wisdom on how to get NHS funding, please share!

8 thoughts on “Show me the money

  1. Tim

    Great article Alison! I have an appointment up at the ERI tomorrow about such things – I’ll report back with my findings on the situation in Scotland.

  2. Emma

    Thanks for posting this! I’m just starting the battle for a CGM. I wonder if you could tell me how long it took you from when you first applied for a CGM until you were able to start up on it?

    I’ve asked my consultants numerous times about getting a CGM in the past 2 years, and I’ve always been greeted with “the NHS will never cover that”.

    1. Alison

      Hi Emma. It took me about 6 months from going into my consultant’s office with all my arguments about why I needed it to actually starting to use it. During the final month I called the PCT daily to chase for a decision. As I said in the post, it isn’t your consultant’s decision as to whether the NHS will fund or not, they need to support you with the clinical case and you need to fight for the funding. Good luck!

    1. Alison

      @Tim after 5 months of messing around I discovered that the PCT didn’t really do anything unless I chased them eg I called them to ask where things were up to, they said they needed to speak to X. I called them a week later and they still hadn’t spoken to X. Phoning daily soon got them moving!

  3. Lesley

    Great article, Alison.

    Judging by some of the cases INPUT has dealt with recently, some healthcare professionals still don’t understand the funding process for insulin pumps. In the case of something that has had NICE technology appraisal, the consultant CAN decide who the NHS will fund – ie everyone who has a clinical need for it. However, some consultants and DSNs are still saying there is no money available. And some bullying PCTs are threatening that if “you” have a pump, someone else will miss out on their life-saving operation…

    No-one should be bullied like this. If you need a pump, funding is provided. Speak to INPUT if you are being fobbed off.

    As you said, CGMS is another issue as it hasn’t been appraised by NICE yet.

    Lesley
    http://www.input-diabetes.blogspot.com

  4. Tim

    Thanks for your input (no pun intended) Lesley – I think some PCTs are still in the dark ages. But one of the joys of Internet is that we can very easily share information, tips and knowledge – which can only be a good thing.

  5. Pingback: About to start pumping? | Shoot Up or Put Up

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