Arthritis and Musculoskeletal Alliance

DebbieCook1Musculoskeletal conference – the patient story

Last week I had the pleasure of speaking at the Arthritis and Musculoskeletal Alliance’s MSK2013 conference about the patient experience.

I was honoured to be asked, to be given the opportunity of talking to commissioners, Healthcare professionals and other patient group representatives. I shared the patient journey slot with Jo from Arthritis Care.

I presented the highlights, key messages from our recent patient survey. It was great to have data representing the journey and opinions from 1630 people with a diagnosis of AS. I was able to highlight the often ‘invisible’ nature of ankylosing spondylitis, the prevalence data (it’s not a rare condition) and talk about the impact on patients’ lives and the lives of those around them.

I’d talked about the same issues the night before to a room full of journalists. It’s clear from the feedback on both days that this information is really making the listeners stop and think about AS and that they are learning more about the disease.

People also report that I speak with passion about the issues. I’m in the wrong job if I don’t.

After the conference ARMA also managed to secure the 3 national Clinical Directors for MSK, Spinal disorders and Major Trauma who all gave a presentation.  That was a large undertaking; to get 3 such high profile post-holders together in a room at the same time. It was fantastic to hear them too speak with passion for making improvements. Really heartening.

It’s so important that both patients and patient groups get to hear about all this stuff:  things that happen to improve the patient experience, but are not always visible to the patient.  Working together, we are all aspiring for improvements.


MSK has no National Strategic Clinical Network to advise commissioners.
That puts MSK behind the curve in terms of the new health landscape.
It’s not good enough and we need to push hard for a better deal for MSK.
Believe me. We are.


But we’re not waiting for an SCN to fall into our lap, nor would it prove a ready-made answer to the issues we’re all grappling with. We – and who better than us? – have got to come up with those answers ourselves, by working together, and that’s why we’re getting on with the job of building MSK clinical networks in England from the ground up.

Peter Kay, the National Clinical Director for Musculoskeletal Disorders puts it very well when he says something like “MSK healthcare is not usually about saving lives but good MSK healthcare makes life worth living”.

Take care all,


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