A Week

‘A week is a long time in politics’ is a well worn phrase. Well worn because it is so often true.

Following Prime Ministers Question on the 5th September where the availability of SDR was raised things have moved quite quickly.

A meeting between the MP who raised the issue, Chris Heaton-Harris, and the board of NICE was hastily convened to discuss the changed guidelines. The meeting took place last Thursday.

The NICE guidelines on SDR had recently changed suggesting that a large evidence base covering 8 – 10 years needed to be built showing the safety & efficacy of the procedure so that the correct candidates could be selected for it. This would effectively rule out it’s availability on the NHS whilst the evidence was gathered.

At the meeting NICE clarified their position to say that the new guidelines should be read as an addition to the old ones they’ve issued. That the evidence should be gathered as operations are carried out. All of which means that operations will be available on the NHS – but decisions on funding them are for the individual Primary Care Trusts to take.

So whilst this week represents a significant staging post in the availability of SDR on the NHS, I and other parents are concerned that we’ll be left with an ‘NHS postcode lottery’ where one region will give funding – and the neighbouring one doesn’t.

We’re hoping that when the clarification on the guidelines is written down it will be so clear and unambiguous that each child who is a candidate will get treatment.

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It’s also a week since the end of the Paralympics. Like may other people I absolutely loved it.

There used to be an argument disability campaigners would make that the Paralympics should come before the Olympics. So that they’d be seen more as a ‘starter’ as opposed to something tagged on the end.

I used to think that argument had some currency – but to be honest I think it’s dead in the water now. I don’t think there’s anyone out there now who feels the Para’s were tagged on the end as an afterthought. The sport was just too good.

I’ve also heard people try and make the argument that the success of the Para’s will put more pressure on people with disabilities. But I don’t think that carries much weight either. Expecting everyone with a disability to be a Paralympian is as daft as expecting every fully able person to be an Olympian – the world just doesn’t work like that.

I booked tickets for the Paralympics last summer (that looks a bit smug written down) way before we knew Rhys would be having SDR. When I sent the order I figured we’d be sitting in half empty stadiums – how wrong was I about that.

I booked them partly as I was annoyed about not getting the Olympic tickets I wanted. Also, I hoped that the sport might sow a seed in Rhys’ mind about how everybody is different but they can still get involved. Surely I, as his father, having spent hours in physio sessions with my eyes ‘looking to the stars’ didn’t need to have my pre conceptions about disability changing. Right. Wrong.

My moment of the games came when we were in the velodrome – it’s awesome in there.

(And if you’re thinking I’ve aged a bit that’s actually my Dad in the photo with Rhys)

We were watching the ladies time trial and a Dutch girl was making her way to her bike on the start line with the support of another team member. She had CP and her balance & walking pattern was arguably worse than Rhys’ – but to see her race was incredible. She stormed round the track. And that’s when the penny dropped in my head.

I can’t ever remember thinking that Rhys would or wouldn’t ride a 2 wheeled bike but all of a sudden seeing this girl race and win silver everything seemed possible. That’s not that I expect Rhys to race in a velodrome (he’d still rather be Katy Perry than Chris Hoy) more that the boundaries of what’s possible shifted in that moment. Long bike rides by the river are suddenly on the agenda.

It’s obviously not just me that has had their mind and opinions moved by the Paralympics. When I first saw a swimmer without arms powering their way through the pool I was amazed – but a week later as I watched, it didn’t seem that remarkable anymore. I was just watching the race. And so I think that the 10 days of sport has shifted perceptions of people with a disability further than they’ve moved in the previous 10 years.

Here’s the moment when Team GB swimmer James O’Shea met British 10m swimmer Rhys Heal.

It was great that the athletes were just hanging round the venues after competing. My sister had her photo taken with an American gold medalist just after she’d got out of the pool.

In amongst all this Rhys went back to school last week and as I picked him up one day 5 or 6 lads were wearing blindfolds running round the playground trying to play blind football. That’s definitely something that you wouldn’t have seen 2 weeks ago. Before we got home I bumped into another parent I know whose child has CP. She told me about the ongoing arguments she has had with the local wheel chair service.

And that kind of sums up for me where we are – we’re somewhere in the middle. We’ve glimpsed through the prism of sport what we can achieve and how incredible society can be – it’s just that we’ve not arrived there quite yet.

But I have to admit that I do like where we’re going.

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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 **