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.

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 **

Distant

Now that Rhys has had SDR, the whole process, decision making and surgery, seems to have happened ages ago – like you’re looking at it through the wrong of a telescope. You know it’s there but it’s all very distant.

Indeed, I think with any decision you take in life it’s natural to want to feel like you’ve got it right. Whether that’s the new pair of shoes you bought or spinal surgery for your child – you unconsciously look for reasons to back up your choice.

We’ve been back home for a month now and Rhys has changed in lots of ways – it’s very hard not to attribute most of them to his surgery. Have a look at this.

It’s Rhys’ 10m swimming badge. He could swim a bit before surgery (doing the doggie paddle) but in the lessons he’s had this August he’s nailed the backstroke. Here’s a clip.

So what’s changed? Now that he can keep his body straight through his hips he can keep his body flat in the water and doesn’t sink like he used to.

He can also now disassociate his arms and his legs better. That means he can do different things with his arms and legs now he’s free from spasticity – exactly what you need for backstroke.

He’s also getting the hang of the crawl, breaststroke and can do ‘butterfly’ arms. Suddenly, that Paralympian status I wrote about last time seems a little bit less ridiculous.

Being better able to disassociate his arms and his legs helps in so many other ways as well. You know those pump action water pistols – Rhys has suddenly cracked how to use one. He can walk, stop, pump the gun, soak you and then walk away.

Granted, St Louis is a long way to go to learn to use a water pistol but those skills all seem new – and they should transfer nicely to doing things with tools at school or home.

And remember me saying that riding a scooter was too intricate – have a look at this.

Now clearly that needs a bit of work but pre op he couldn’t even stand with one foot on a scooter without toppling.

He’s also better at climbing in the park (some nice sidestepping around ledges), has nearly managed to get his leg over the banister at home (impressive range of movement there) and somehow since his surgery he just looks more grown up.

Now I’ll concede that his moustache isn’t a result of SDR but in so many ways Rhys’ mobility has improved in such a short space of time it’s almost unarguable that surgery has been good for Rhys.

What’s also now clear is that Rhys will need another round of surgery to lengthen his heel cords as he hasn’t recovered quite enough range of movement to walk with completely flat feet.

This isn’t a big surprise for us but we were hoping to avoid it. It’s a much less invasive procedure and Rhys is scheduled to return to St Louis for this in October.

The astute will have realised that this coincides with the finals of the BBQ championships in St Louis but I can guarantee that it’s a coincidence and I won’t be packing my tongs. Promise.

Enjoy the remainder of the summer.

Potential

Before leaving America I found out that you can sometimes pick up cheap tickets to go and see The St Louis Cardinals, the town’s baseball team play.

I went down to the ground last Monday and picked up some $10 tickets for the 7pm fixture against the LA Dodgers.

Chatting to people near us as I tried to figure out the rules everyone quickly realised we weren’t locals – and when they knew we were from London they were excited about the Olympics being in our home town.

By chance, one of them was a guy whose child had craniosynostosis – where the plates of a child’s skull fuse too early causing a brain injury and frequently cerebral palsy.

His son had had surgery at the same hospital as Rhys and he told me how the surgeons there have pioneered a new, less invasive technique to separate the plates. It means the child only needs one round of surgery instead of the repeated operations to divide the plates using the old method.

It was another reminder of the genuinely remarkable things the surgeons at the children’s hospital are achieving.

As the match got underway the temperature was still in the ‘triple digits’ and it was clear that the boys were going to melt before too long.

They managed to last about half of the game which was fine – it was a nice thing to have been able to do before we travelled home.

As we came back through Heathrow airport on Thursday it was a moment to think about where Rhys is at. A few weeks ago I’d hoped that Rhys would be back to himself before we boarded the plane. Now though, achieving parity doesn’t feel enough (it’s that thing about progress again) but you can see some clear changes in him. His posture is better, he’s more upright and he’s standing and walking with flatter feet.

What’s also now clear is that his old pattern of walking (in toeing & tip toeing) is going to take a bit of time to revise. Having walked like that for 2 1/2 years it’s not going to disappear over night – though it has improved. What the physio’s call ‘the motor plan’ is going to need to be re learned over the coming months which means lots of physio sessions.

I guess what he really does have now is potential. His legs are much softer than before, he has greater control over them and he has greater range of movement. Maximising that potential will take time. It’s one of those ‘get out of it what you put in’ situations.

Coming home to the start of the Olympics feels very apt. I’m taking Rhys to the Paralympic Games in September and I hope that as he grows up he’ll remember them. I’m not assuming that Rhys will want to do that or that he’ll be any good at sport (he’d much rather be a singer right now anyway) but why shouldn’t that be within the realms of the possible for him?

Having watched the opening ceremony over the weekend the games motto of striving to be ‘Higher, Faster, Stronger’ couldn’t be more appropriate right now.

The Que In The Lou

Had I known that St Louis had a barbeque society before we’d left the UK I’d probably have applied for membership.

If I’d known that they were holding a championship whilst I was here I might have entered.

And had I realised it was being held in the car park behind our apartment – well I guess that’s what some people call fate.

But then fate can work in mysterious ways. Had I been stood there with my tongs when Ed turned up with his barbeque ‘The Punisher’ then I would probably have felt inadeqate.

And then when the team from Tom’s bar starting cooking ribs with their BBQ I would have had to have conceded I was out of my depth.

It was good to be out though and break the routine of visiting the hospital. Rhys had said to me last week ‘can we come back here on holiday?’. And I knew what he meant – the last few weeks haven’t been much fun. Indeed the last 5 sessions saw us taping and strapping his legs in various directions before marching up and down flights of stairs to see what worked.

That all served as a cue though to deliver on the promise to take him to see the Katy Perry film. We also went back to the splash park that we found a few weeks ago. Returning to the Aquaport was something I’d hoped we’d be able to do but just a fortnight ago, with Rhys still very weak, it had seemed out of reach – but there we were.

He’s also made some nice progress in the physio sessions. Though it may seem insignificant he was on the climbing wall in the gym (with support) and was reaching for footholds way further than I’ve ever seen with his legs. He also spent 3 minutes side stepping (on each side) on the treadmill. It doesn’t read as being impressive but that’s where the progress is made.

So it was nice to end the weekend by stumbling into the BBQ championships. Rhys was certainly impressed by the band playing there – and this video clip serves as a demostration of how close he is to being himself.

And if you’re wondering, the cook off in The BBQ Championship Finals are being held in October.

Anxiety

It’s probably not been hard to tell from reading these posts the points at which we’ve been the most anxious.

Immediately post op wasn’t much fun at all. Seeing Rhys looking incredibly weak and in a lot of pain I think it’s only natural to question whether or not you’ve just made a whopping mistake.

Even though we were assured that his recovery was well within the normal range the knot of anxiety in our minds only loosened as Rhys made progress.

I can remember the period before Rhys could walk. I obviously felt anxious about whether or not he ever would. It’s uncomfortable carrying that anxiety around with you all the time but it is quite motivating. You keep reading and researching as you try to find the therapy, the method, the ‘thing’ that will help. And as Rhys became more able so the anxiety slid away a little – and with it, some of that motivation went as well.

As Rhys is getting closer to his pre op ability you can again feel the anxiety passing. The realisation is though that we need to keep the motivation up. If Rhys is to get the most back from this surgery we need to get him back to where he was, and then kick on – and that will take a fair bit of effort.

We were reminded of that when we saw Rhys’ surgeon Dr Park yesterday for a post op assessment. He was pleased and impressed with Rhys’ recovery so far. We talked a lot about the stretching and the physio that Rhys will need to do to maximise his new potential (quite a bit).

Some of it isn’t going to much fun. Rhys has got these new splints to wear at night for the next 6 weeks (he’s waking again as I type).

The aim is to to stretch out his heel cords. Dr Park repeated his thought that Rhys will need to have surgery to lengthen these – that’s something we’re continuing to explore while we’re here.

We also talked about how the UK body NICE have changed their guidelines on the surgery being performed in the UK which is likely to have a detrimental effect (more on this in another post).

Dr Park said that Rhys’ progress will probably come in bursts over the coming weeks (I think we saw a significant burst last week) which means I’ll probably post here on a less frequent basis as we move on.

On the wall in Dr Park’s department are lots of photos of the kids he’s operated on. Given that we may not see him again for some time we took our photo to add to the wall at some point in the future.


And for the record Rhys’ Welsh rugby shirt was in the wash.

Puzzle

In the downtown area of St Louis stands the Gateway Arch. You could see it from the hospital window so went to have a look at it over the weekend.

Up close it is pretty spectacular.

At the very top is a viewing deck which you travel up to in little pods. We had about 30 minutes to kill before our slot and in that time Owen was running around the waiting area.

He was doing that thing that toddlers have endless energy to do. That is, running, spinning, stopping, crouching, stamping, arms up, arms down etc etc. If he’s not annoying anyone else I find it amazing to watch. It’s as if his little brain is trying out all the possible things it can do with his body – trying all the combinations at different speeds until he falls over – and then doing it again.

Cerebral Palsy throws a bit of a spanner in the works of that. Instead of that learning process happening automatically the changes in body position and transitions need to be learned and coached in physio sessions. Where a fully able person might be coached to do a complex task (drive a car, swing a golf club) someone with CP can need to be coached in simpler tasks, to sit, stand, walk etc etc.

You can see in the way Rhys is moving at the moment that although his legs no longer feel stiff he is still walking in a similar pattern to the way he did pre op. I guess that’s partly habit and partly because his legs have spent so long in that position that it’ll take a bit of coaching to change – he is only 2 weeks post op after all.

So it feels like there’s a bit of puzzling to be done in the gym this week. That is, working out which combination of strapping, taping and exercising will work for Rhys to help him re adjust the way he moves.

And that’s not because I want him and his brother to be the same – they’re both different and they’re both ace.

The Remarkable Becomes Routine

There’s a video up on youtube of the progress Rhys made from birth to just before his op. The odd thing is that it feels like the stages shown in the video have been crammed into the last 2 weeks.

It’s 14 days since his surgery now. Here’s his scar, neat isn’t it?

Him and his friend Mario were wandering about with their shirts off at the zoo showing off their matching scars. It looked like instead of naming our children we just use branding irons to identify them.

SDR is performed fairly frequently at the hospital here. The nurses casually say ‘he’s had a Rhizotomy’ in the same way you’d say ‘he’s had sausages for tea’. What can one day seem remarkable quite quickly becomes routine.

Same with Rhys therapy sessions. What seemed remarkable yesterday already feels routine. Today in his session he spent 10 minutes on the treadmill and walked up 4 floors on the fire escape stairs. And though it sounds unappreciative it almost doesn’t feel worth mentioning that he did that. Much the same as I was writing last week – you pocket the progress and move on.

You could though see that he was tired today. He’s put a lot of effort in this week and we’re very proud of him. Again, the weekend is coming round and I’ll probably skip posting on here for a day or so.

In the meantime, a competition. The guy in this clip is a volunteer who wanders round the hospital playing his violin to patients – any guesses as to what tune he’s playing? Answer on a postcard…

Confidence

The kids hospitals at home have child psychologists attached to them and when your child is having treatment you can draw on their knowledge – I find talking to them fascinating.

I’ve spoken to them before about Rhys’ confidence. He’s always had a reasonable level of it which has carried him a long way but I’ve often worried that one of these stays in hospital would knock it out of him – especially this one.

One of the psychologists told me that confidence is self reinforcing. That is, that if Rhys is comfortable and confident in who he is, then those around him will accept him as he is, and his confidence will be reinforced. The reverse is also true. That is, that if you aren’t comfortable and confident in who you are, then people will view you as such, and that will be reinforced. Clearly, you want to be on the right side of that equation. (Not sure if it applies to adults but it sort of fits.)

Over the last 48 hours we’ve been giving Rhys less pain medication and it seems that though he is still weak, it’s partly confidence holding him back more than discomfort.

However, when we get over to the gym at the hospital his assurance in his ability seems to go up a notch. I think it’s partly to do with the way the room is with lots of grab rails and crash mats, partly the energy the physio’s bring and partly him wanting to show off.

This morning at home we were trying to practice side stepping. I maybe got him to do it twice with me taking all his weight. His spasticity would previously be pulling his leg in the opposite direction (causing the ‘scissor’ in his legs) so he’d never really do it.

But once in the gym he side stepped quite nicely on the treadmill loads of times – quite impressive. And then this (watch for him side stepping completely independently).

Now that may not seem that incredible but it’s a useful skill when walking to be able to change direction. He then followed that up with his other new moves. It still needs a bit of work but he’s almost nailed the ‘water sprinkler’ dance as seen in Katy Perry videos.

I also realised today that we’ve reached the half way point of our stay. Two weeks from now we’ll be heading for the airport to fly home. Rhys also seems about half way in his recovery.

Although he now has some improved quality in his movement he has some way to go before he recovers all his speed and endurance – but it does at least feel that right now we’re on the right side of that confidence spiral.

And he can do ‘The Sprinkler’ dance.

Step Step Stop

There’s loads of good things about the city zoo here. One is that it’s close to the hospital, the other is that it’s free to get in. That means that after a session in the gym you can go there quite easily for a couple of hours and as you inevitably don’t see much you can promise to go back.

We headed there today with Rhys’ new buddy Mario.

They’re more or less the same age and had similar ability pre op. The nice thing is that they had surgery a day apart and they are recovering at pretty much the same pace. In fact they’re egging each other on which is very handy. So when one of them wanted to stand to see the giraffes the other wasn’t far behind – which is exactly the reason for heading for the zoo.

Walking is one thing (this will make me sound ungrateful) but the control required to go with it is difficult to master. Pre op Rhys would rush everywhere a lot and grab something when he arrived to balance. As when you ride a bike the momentum from moving fast keeps you upright. It’s hard for kids with CP to have that extra control to stop and turn etc.

Here’s a quick clip of him trying to take 2 steps and stop.

You can see it’s hard work to co ordinate everything. However, his posture and gait is pretty good even though a wobble is never far away.

Aside from that Rhys is working on some new moves that you probably won’t find in physio manuals . Once we get them mastered I’ll post some clips. And in case you’re wondering if we’ve erased Owen, don’t worry, he’s never far behind.