Limited NHS support for OA.

crinkly

I summarise my situation as diagnosed with widespread OA in my mid-40s after I was seen by an excellent Professor of Rheumatology who gave detailed explanations then prescribed NSAIDs and left me to get on with it under GP supervision.

I changed my PE teaching job to a classroom subject but was soon exhausted by its demands. After a very painful year (physically and emotionally) I took early retirement at 50, became a part-time wheelchair user, was granted DLA (at second attempt) and found an absorbing voluntary role that doesn't depend on mobility. I've had great family times, covered many miles in swimming pools and on a bike, even realised a long-time aim in achieving an MA degree at age 73. So life has been fulfilling and fun in spite of the 'less good' patches.

When I read repeated laments, in this forum, of lack of NHS support for OA I know exactly where you are coming from and recall my days of feeling completely abandoned and worthless. I empathise but feel powerless to offer solutions. It's very much a journey that has to be navigated individually.

Other than pain meds, whose benefits are debateable, there is little NHS help available until we reach the point at which a joint is damaged beyond usefulness. The promised research continues but, as a non life-threatening condition, OA is not a high priority for funders and my generation won't see much progress although can be excited for the future as VA's fund-raising makes a major impact.

Thanks to keeping as fit as possible my goalposts have moved only slowly although the frustrations have continued and I've been told repeatedly to live with my chronic back pain unless more worrying symptoms occur. By now (aged 76) my mobility has become seriously compromised, prompting an approach to my new GP following our house move. To my astonishment I was referred for an urgent MRI scan and today a GP's phone call resulted in promise of immediate referral to a spinal surgeon.

Long waiting lists may come into play so I'm staying cautious but this is a huge step forward. OA is a series of very long tunnels but it seems there are lights at the end and I am grateful for this glimmer of hope in dark times. It would be amazing to walk round a shop without crutches and to hold a conversation without eyeing up the nearest seat! Dare I dream............?

Anna

Hi @crinkly ,

Yes, you dare dream! It sounds like you've coped so well with the challenges of osteoarthritis over the years - it's good to hear such positivity.

It's a great step forward that you're being referred to a spinal surgeon and I sincerely hope you get seen promptly.

Do let us know how you're getting on,

Anna (Mod)

frogmorton

Wow @crinkly

Your post is so well written and I think quite inspiring to those starting with OA. Thanks to your own efforts to change things; exercise and thinking outside the box your life has been good with barely any help from the medical profession.

I have always felt that OA has been the Cinderella of health conditions.

Having had back surgery myself before I was 40 I know that the recovery is hard work, but you are used to that. I had had agonising back pain on and off for years before it 'went' completely and my left leg went completely numb then they listened. Prior to that any referrals I ever had to an orthopod had been useless. No-one wanted to know.

I am so excited for you. I very much hope your surgeon can help you and you'll be off those crutches.

Very best of luck and please do let us know how you get on.

Thank goodness you moved house is all I want to add!

Toni x

crinkly

This seems a good time for an update.

After three months of waiting I finally received an official-looking NHS letter. My heart leapt but past experience suggested that the envelope might not hold quite what I hoped for. Needless to relate it didn't!

Rather than the appointment with a consultant that I'd been led to expect I have to jump through the Physiotherapy hoop first despite my GP knowing how often I have been down that route in past years. (Perhaps having moved to a new area and having been treated mainly by a private physio means that my records are not sufficiently detailed.)

I have obediently accepted the first available appointment - almost two months distant so five months on from my GP referral, which was made as 'urgent'.

It could be worse and might even prove helpful so I remain positive that I am at least on the right track. I must be ready to resist my usual ploy of making light of the problems or of denying the reality that I consider my understanding of my own body to be greater than that of someone meeting me for the first time!. There has to be some benefit from years of studying human movement and a past that included participation in sport at national level so all that remains is for me to convince a physiotherapist that , in spite of advancing years, I know what I'm dealing with!!

Thus the light at the end of this particular tunnel remains visible but hasn't exactly grown much brighter since my last post.

Like so many of you I have fluctuating feelings of being 'useless' and of struggling with the pain from several joints. I too have patches of lack in motivation when every movement can be an effort on some days but I also have the huge support of an understanding husband. In addition my voluntary roles with a nationally known listening service and in a faith community provide the discipline of regular commitments that are distracting by their focus on others and the need for continued learning.

In the world of OA and its lowly place in NHS priorities I'm very blessed although it doesn't always feel that way!