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Giving GPs the Tools campaign- Susan’s Personal Experience

Posted By Donna Wicks, January 28, 2018

Susan has kindly submitted her personal experience of visiting GPs whilst having a hypermobility syndrome.  We should point out that many GPs have come to the HMSA’s Kent Model Professional Masterclass, seeking more information and advice on how to best manage, what can be, complex and multi-systemic disorders. GPs have personally paid for training and given up their Saturdays to attend; some of them came to all 3 Masterclasses in Kent.

So whilst there is undoubtedly many GPs who do not recognise or who are not aware of hypermobility related disorders, there are those who are proactive and have insight into the difficulties we all face. The HMSA wants to spread this knowledge to all GPs in the UK and help disseminate the information worldwide. Many of you will relate to Susan’s experience (name has been changed for privacy reasons).

I first noticed signs of hypermobilty when I was 12, my hips would semi dislocate when I walked, it was more of an annoyance than painful at this time. I visited my GP who put it down to my age and advised I would grow out of it. However, I didn’t, I started to get discomfort when walking and sitting. I continued to visit my GP, who would time and time again, tell me I would grow out of it, to take pain killers and to avoid anything that would aggravate them.

Finally in 2010 aged 16, I saw a GP who actually listened to what I had to say. She was unsure what was causing my hips to move, so referred me for x-rays and to a rheumatologist as she was convinced there was an underlying issue. Shortly after I was diagnosed with hypermobility. I seen a physiotherapist a couple of times and was advised that as long as I stay active I shouldn’t get many issues and that was the end of that.

Since then, I have suffered with a lot of back pain and hip pain, at times I can barely walk. When visiting my GPs, they would only focus on my back pain and advise that if I still had hip pain afterwards I should go back again. I felt this was because it was easier for them to diagnose, as they could and would put it down to sitting at my desk all day or pushing myself to hard at the gym etc.

They would also do tests for water and kidney infections, which would come back clear and then prescribe me pain killers (tramadol or codeine) to ease the pain. These would not help at all, the dose would get increased and again not help, so I stopped taking them. I advised I was diagnosed with hypermobility multiple times but the GPs would disregard this instantly, saying if I did have it, they wouldn’t be connected. Making me feel like I was lying and it was all in my head.

I started questioning it myself, thinking maybe the diagnoses was wrong. I would leave feeling deflated and annoyed. I stopped going for a few years after this, as I knew they would not listen to me and I didn’t want to be prescribed more unnecessary pain killers. My employer and family would encourage me to go back but I had the attitude of what is the point, they will not help me and I put up with the pain day in day out.

Eventually in December 2016, I couldn’t cope any longer after the pain became unbearable. I rang my GP surgery and told them my back, hips, wrists and shoulders were in constant pain to the point where I could not sleep. He asked if I knew any reason which could have caused it, to which I advised no but I was diagnosed with hypermobility in 2010. Again he did not believe that I could have been diagnosed with hypermobility because apparently I would have been to young at the time. This comment made me feel belittled and aggravated, as if he looked at my records he would have seen the diagnoses. But due to the fact I am in pain everyday he agreed to send me to a rheumatologist, who diagnosed me with EDS. He appeared annoyed that my GP had referred me again to get diagnosed, questioning me on what I had told them. I am now regularly seeing a physiotherapist which is finally  starting to help.

In reflection the only positive GP experience I have had in the last 12 years, was when I was 16, the doctor was unsure what was wrong but I felt satisfied with the care, referral and treatment I received at the time.

Since then I have not had one positive experience with my GP, every one of them have made me feel that I was wasting their time, that there isn’t actually anything wrong with me, it is all in my head and that I should just take pain killers and rest to ease the pain. I left every appointment wishing I didn’t go in the first place.

I feel that I have spent the last 7 years in preventable pain, purely because the GPs I saw did not have enough (if any) knowledge of the condition.

This is a photo of how my GP experiences makes me feel.. deflated.

You can help the HMSA to spread information to all GPs and primary care physicians in the UK by donating a small amount of funds to the HMSA’s Giving GPs the Tools campaign. You can do so by the following means;

You can donate directly to

Or Just Text HMSA13 to 70070 followed by the amount you wish to donate 5 or 10 (£)

Thank you for your support.

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