The NHS view…Nothing Helps Scoliosis!

I saw my GP today who was lovely.  But…

The over-arching view of the NHS at all levels from GP to Consultant Surgeon seems to be that ‘Nothing Helps Scoliosis’. 

This position is adopted at all levels because there are no clinical trials to show whether or not conservative therapies actually work.  And no one working in the NHS system can give a recommendation for a form of therapy that is not clinically proven.

OK, I can understand that position, but it also frustrates the hell out of me.  Scoliosis treatment in Europe, America and China is viewed very differently and patients are quickly introduced to an exercise programme that will strengthen and rebalance their muscles, reducing curve progression and reducing the number of cases where spinal surgery is required.  Why doesn’t that happen in the UK?

The difficulty with providing ‘evidence’ from controlled clinical trials is that it requires there to be a ‘control group’ who receive no physical therapy.  Who would volunteer to be in that control group?  As a parent I would want my child to be in the active exercise group as this gives them the greatest chance of controlling their curve.

The Gap in the NHS

There seems to be a gap in the NHS management of Scoliosis.  To obtain a diagnosis you need to visit your GP.  They will ask you to perform the ‘Adams’ forward bend test and if that shows an irregular ‘hump’ on one side of the spine they will give you a referral to…A SURGEON!!  Surely there should be an intermediate step between GP and surgeon?  The cost of spinal surgery is enormous – surely it would make sense to reduce the number of people needing surgery by providing a programme of physical therapy?

This is an issue that really bugs me and I will no doubt return to it!


Someone tell me what to do

confused faceToday I’m struggling.  In the past few weeks I have looked at so many different websites, read so many articles and spoken to so many people about Scoliosis – but none of them can tell me what I really want to know – what I should do to prevent this curve from getting worse as Chris grows.

There is no ‘one size fits all’ solution.  Everywhere I look there are different conflicting opinions and it feels like the more I learn about Scoliosis the less I know!  I have read about all sorts of different therapies but I don’t know which one, or which combination is the right thing to do.

I’ve got an appointment with my GP today to see if she can offer any advice on what path to take.  Fingers crossed that she can help as I have reached the point where I don’t want to think about this anymore.   I just want to start doing something positive.

The Diagnosis

I had never heardScoliosis illustration of Scoliosis when the physio first mentioned it.  We had gone to see her because my youngest son, then aged 12, had complained of some pain in his right shoulder.   I had looked at his back and been surprised by the strange shape it was in and naively thought a few sessions with the physio would sort it out.  How wrong was I?

Our physio was very kind and explained to both of us that she could help with some exercises to improve his shoulder position and reduce the pain, but that we should make an appointment to see our GP and be referred to a consultant orthopaedic surgeon for a full diagnosis.  With my heart in my mouth and tears threatening to burst forth I smiled at Chris and said “let’s focus on the shoulder exercises today and then we’ll make an appointment to see our GP”.

While Chris focused on the exercises I tuned out completely, my mind flying in all directions as I tried to process the bombshell that my gorgeous boy had a major spinal problem that required us to see a surgeon…for a condition that I’d never even heard of.

Well that was the start of our Scoliosis journey and it has been a roller coaster of ups and down ever since.  The GP was kind and efficient, asking Chris to do a forward bend to assess his spine and quickly confirming that he did indeed have Scoliosis and that we should be referred to an orthopaedic surgeon.  We are fortunate to have private health insurance and I opted to use this so that we would be seen quickly.  Within a week we were in the consultant’s waiting room.

In the days in-between I started to google Scoliosis and honestly scared myself stupid.  The majority of material I found pointed to a seemingly inevitable end situation where spinal surgery was the only solution.  I hoped the consultant would offer a more positive point of view…I was wrong.

He gave Chris a physical assessment and then we were sent to the x-ray department.  After an hour and a half of waiting it was finally his turn.  I offered to go in with him, but being the brave soul that he is he said he’d be fine and off he went, a slim little boy in a large green x-ray robe.   Once the x-rays were done and he was dressed again we returned to the waiting room.  Then we were called back in to see the consultant.

He had website xraythe x-rays up on his screen and then used a software programme to calculate the degree of curvature.  “He has a 20 degree curve, nothing severe at present but it may progress further.  If it does get to 40-45 degrees we would consider surgery.  We’ll monitor him closely and I’ll see him every 4 months for a review and x-ray.”

My first and instinctive question was, “How do we prevent it from progressing?  This was quickly followed by a whole load more questions about different therapies I had read about on the internet.  His response was brief, negative and once again ripped my heart apart.  “Some people try bracing and physios but nothing really makes any difference – we’ll just wait and see.”

WOW…I didn’t know three little words could piss me off so much! What use is wait and see to my son.  At 12 years old he has another 6+ years of growing still to do – are we expected to just sit around and wait for the curve to progress over the next 6 years?  NO WAY was I going to do that.  An instinctive and deep seated sense of good manners prevented me from shouting at this man and I also didn’t want to upset Chris, so I simply said “Thank you” and we left.