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Giving GPs the Tools campaign – Jenny’s Personal Experience

Posted By Donna Wicks, January 31, 2018

Many people who have a hypermobility related disorders. such as, hypermobility spectrum (previously known as joint hypermobility syndrome or benign joint hypermobility syndrome), have had a mixed experience with their GP or primary care physicians.

It isn’t uncommon for members of the HMSA to tell us that they have been accused of having a mental health problem, rather than a physical condition. It is well known, that mental health is closely linked to physical ill-health. Depression and anxiety, is known to co-exist in people with long term conditions of all types, usually those which cause chronic pain, persistent fatigue or physical disability. So it should be expected that we may, to some degree,  suffer from depression and anxiety, but probably due to our experience of living with what are misunderstood and complex conditions, after all, we are no different from those with other long term conditions.  However, we now know that there may be underlying physical changes to our brains, which may be linked to actually having a hypermobility condition. This is a very simplified explanation and much more research is needed to establish the evidence.

 

Jenny explains the complexities she faced with her own GPs. (Name changed to protect privacy).

 

 

I have been the recipient of both extremely helpful, and less than helpful care via GPS.

A few years ago I moved to a new area, and therefore signed up with a new GP surgery. This coincided with the same time I was diagnosed, and started to really struggle with management of my symptoms.

Initially the GP I saw was helpful, and he was even the doctor who diagnosed me with benign joint hypermobility. I was in out of the GPS a lot, as I had various health problems arise that no one could really sort out.

After doing research myself, I found out about Ehlers-Danlos Syndrome, and all the other issues it can cause, and it soon became clear that everything was linked.

However, this wasn’t the opinion of my GP, who was very much of the opinion that, as I had benign joint hypermobility, nothing was linked and I was made to feel like a hypochondriac. It was even suggested that the pain was due to my mental health. I fully understand that pain and mental health issues can come hand in hand, but I absolutely do not support his thinking in that my pain was ‘just’ my mental health. We fought for a referral to a geneticist, which was eventually begrudgingly made, however I feel it was made very much with ‘ I’ll do it but he will say the same as I’ve diagnosed’ feelings from my doctor.

As it transpired, the geneticist diagnosed Hypermobile Type Ehlers-Danlos, and I finally felt validated. I understood what was going on now, and I believed myself, something my GP had made me doubt.

My GP however, still struggled to take this into account, despite the geneticists diagnoses and consequent report.

It was the advice of genetics that rheumatology be involved. However my GP refused to refer me. He denied multiple times. He was of the opinion that it would add nothing to my care, despite the fact at that time, I didn’t have much care, and rheumatology is supposed to head EDS care. I had major issues getting referrals to anyone else whom I needed to see, and had to practically beg. Again, this made me feel invalidated, like a time waster. I was having to fight every step of the way to get any medical care, it was exhausting and disheartening.

I did finally get a referral to orthopaedics, but my surgeon had to then make further referrals to appropriate care as my GP still refused, and my surgeon agreed it was needed.

 During my care with that GP, I was made to feel like a fraud. I didn’t yet understand EDS myself, and  I simply didn’t have the medical support I should have had. I didn’t know how to manage my condition, and the people that should have been helping me to figure this out, were not. I had to fight for every single referral, and several things were left untreated until I joined my new surgery.

I decided to move from this surgery in the hopes of finding a doctor whom took me more seriously. Luckily, I found the perfect doctor.

My new doctor has listened to every single thing I have had to say. He has gone above and beyond every single time I’ve needed him, and taken time out of his day to check in with me after surgeries. He has not judged me by prior history or notes, something I am grateful for. He is aware of EDS, and this has obviously helped. When I go to my new GP with a query, he answers in depth and gives me as much information as possible. My new GP will literally move heaven and earth to help. I understand my condition a lot more now, I now have the medical support I need. He’s put referrals into appropriate places, he’s given me tips to cope until my referral is accepted. He’s never once doubted me, made me feel like a fraud, or ignored me. Because I can work effectively with my GP, I actually need less GP visits. My condition is now controlled much more effectively because I have the right support and care. A lot of the time, I can now just speak to him via the phone, or leave a task for him with reception, because I know he knows me well enough, and I trust him. Both my experiences were totally contrasting. I can say with certainty that my first GP did not have much knowledge of EDS,  and I feel this effected his way of working. I felt it was very much a case of ‘ I’m unsure what that is, I didn’t diagnose it, therefore it’s not real’.

My current GP has much more knowledge, but this isn’t all that makes him an amazing doctor. He listens, he does not judge, he genuinely cares and wants to help. He’s up for a challenge, and he treats me as a human being. He is proactive, open and supportive. If he doesn’t understand something(which is rare!), he will research it. I am starting to take back control of my life. He is a brilliant GP, I am very thankful.

To enable more of us to have the experience of a great GP who researches what he doesn’t understand please give to the HMSA’s Giving GPs the Tools campaign. You can do so by the following means;

You can donate directly to http://bit.ly/2j3ouc7

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

Thank you for your support.

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout


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