NICE

‘Why isn’t SDR available on the NHS?’ is a question lots of people have asked me over the last 6 months – and it’s a good question.

In this country the National Institute for Clinical Excellence (NICE) decide what medicines and surgeries can be performed on the NHS in this country.

Over the last year there’s been a gradual acknowledgement by NICE on the effectiveness of SDR leading to the hope that in a few years families will no longer trek to St Louis for surgery.

However, that progress was undone a few weeks ago.

Over the bank holiday weekend Rhys’ surgeon, Dr Park posted a message online. In it he was reviewing the newly published guidelines for British doctors for managing spasticity in children. I’ve had a look at the guidelines from NICE myself. Here’s a link to them.

It mentions lots of the treatments we’ve explored in the past. Physiotherapy (tried that) ankle orthotics (got a draw full of them in Rhys’ room) botox injections in leg muscles (got that T shirt as well – 3 of them).

But in the report SDR isn’t mentioned as a possible treatment – just that more research is required. And if it isn’t in the UK guidelines then receiving SDR in this country on the NHS just got a lot more distant.

However, the writers of the report do know about the efficacy of SDR as they’ve issued papers on it in the past. So why the change now? Well, make your own mind up about whether that’s about cost, pride about admitting a lack of knowledge or just laziness. Either way it’s an omission that will harm British children with Cerebral Palsy.

Knowing that NICE were moving towards approving SDR in this country helped us in our decision making. If a British board of clinicians were looking at the evidence and were deciding it was beneficial then we should go for it.

Reversing that position though makes it appear as though there’s a flaw with the surgery, that it’s been proved unsafe or ineffective – all of which we know is untrue. I’m sure that this shift will make some families more anxious about making the trip to St Louis. It will feed some of the myths and ignorance around the procedure.

What is clear is the impact that it’s had on Rhys and other ‘Rhizo’ kids we know. The two other British boys staying near us in St Louis have made huge progress since surgery. One boy has just walked to school for the first time this week, the other 3 year old has just left his walker behind and taken his first 12 independent steps.

We bumped into Rhys’ paediatrician recently who previously had little knowledge about SDR. I didn’t have to explain too much about how Rhys was – it was clear from looking at him.

He’s more upright in his posture, better able to balance, he walks with flatter feet, his trunk sways less as he walks, he tip toes less – still work to do but clear improvements.

By the end of the chat two other paediatricians had come out of their rooms to see Rhys chasing Owen around the waiting room. Indeed, other professionals that know Rhys have shifted their opinion on SDR this summer.

So why blog about this now? Well, because yesterday it landed in David Cameron’s inbox.

At Prime Ministers Question Time an MP, Chris Heaton-Harris asked David Cameron to review the NICE guidelines.

And the reply? He promised to “look very closely and see if there is anything more that NICE should consider”.

Though I’d love to claim the credit for that I can’t – it goes to another SDR family.

I want to give them as much support as I can in the coming months because there’s a long way to travel before the guidelines actually get changed – agreeing to look at something doesn’t always equate to change.

And when Mr Cameron is ready to “look very closely” he’s welcome round here to meet Rhys which should tell him precisely “if there is anything more that NICE should consider”.

I think there will be more on this in the future.

** Updated 11th Sept **
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6 thoughts on “NICE

  1. Hi Gareth,
    Chris and I only reviewed your last couple of updates last night, what an amazing difference and what an amazing happy child Rhys is! It’s hard to beleive that this surgery is being overlooked maybe a link to your site might give Mr Cameron a taste of the success instore if it got accepted!! Like always if you need any help with future projects be it fundraising of just raising awareness you know where we are.

    xxx

  2. Hi Gareth
    It is wonderful to see the difference that Rhys’ op has made to his ability to race around and to access more of those usual little boys’ activities. Your family has been remarkable in your pursuit of better life chances for your amazing little boy. I agree that information about SDR should be more widely available and its use, accessible for more chlldren.
    Warmest wishes
    Rose from Christopher Place

  3. Hey Gareth, just love your words! Would you want to make a short video…..??….I have already so many amazing vids ( we just need to ask the parents to okay it) and maybe this is something we could publish amongst the MPs, Facebooks and what so ever! Anna

    • At the moment a lady called Jo Davies is co ordinating the support4SDR campaign. There is a march in London on the 4th November planned so put that in the diary.

      Before and after videos are always the simplest way to explain what the surgery does. If you have some examples then (with permission from parents) let me know.

      Hope you’re well,

      G

  4. let’s hope that SDR becomes more available to british families in the future. after all, rhys’ amazing improvement shows how it can really change the lives of children with cerebral palsy. love to all alex xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxo

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