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Giving GPs the Tools Campaign – Kaitlyn

Posted By Donna Wicks, January 24, 2018

Many of you will know that the HMSA is currently running a campaign called ‘Giving GPs the Tools’. The campaign has several objectives, including the below;

  • to raise funds for providing GPs with packs of information,
  • guidance on the diagnosis, management and treatment of people with the type of hypermobility related disorders it supports
  • training opportunities based on the ‘HMSA Kent Model’ run by the HMSA Medical Advisors and Professional team

We would like to be able to send a pack to every GP practice in the UK. This will include a list of resources and signposting to additional information for GPs to use, including the RCGP’s EDS Toolkit, which is supported by EDS UK, when it is ready.

The HMSA has been running for 25 years and during that time it has worked hard to build up education and awareness. However, it still takes far too long for diagnosis to take place, which can lead to long term disability and poorer outcomes. We have been collating personal experiences over the years to help better understand why there are delays in diagnosis and the member below shares hers with us

 

‘Since I was about 5 years old I had been having recurrent subluxations, as well as dislocations of both my knees. At the time I didn’t actually know what was happening so would say to my parents that I “twisted my knee” whenever they ran over to help me. My family does have a history of knee problems with my Dad dislocating his whilst playing football on multiple occasions and his nan suffering from pain too, so my parents took me to see the GP for help. On every single occasion that we explained to my doctor that I twisted my knee and would be in so much pain, they would respond with “oh it is just growing pains, she’ll grow out of it in time.” You would think that this would change with the amount of times I went to the GP but no, my doctor was adamant that it was growing pains. Of course, my family trusted my doctor as we didn’t have anything else to go by but the knowledge that knee pain was normal in my family. However, after dislocating my knee badly at my cousin’s party, when I was about 12 years old, my Dad saw the amount of pain I was in and rushed me to A&E. This was the first time since my first accident that I was told that they were subluxations and that my joints were hypermobile. Since then I had been on crutches and wearing a brace countless times, with many physio programmes, MRI scans and consultant appointments. It wasn’t until I was 18 years old and having multiple subluxations and dislocations (and off to university) that my new GP referred me to the Royal National Orthopaedic Hospital. Once there I finally met someone who could help me and was sent for two ligament reconstructions and physio over the following two years. My surgeons even told me that when they began the operation they actually tested to see how far my knees would pop out and they went all the way.

After having these operations my knees have been the best they have ever been but I do still get a lot of pain and fatigue in them and my other joints (I am now 21.) Now I am currently trying to get help from my GP with my bowel and bladder problems but we haven’t got very far with that yet.’ (Kaitlyn, 2017)

Whilst it is good news that Kaitlyn has been diagnosed and received treatment, it did take too long. Whether there would have been no need for the operations if early diagnosis had been made is a question for the professionals but the emotional impact and the negative experiences of being in pain without an adequate reason throughout childhood is unacceptable.

Some people with certain forms of hypermobility related heritable disorders of connective tissue should not have certain operations or they should be a definite last resort because of the recognised poorer outcomes. Kaitlyn was lucky to be sent to the Royal National Orthopaedic Hospital, who has experience in dealing with complex cases of hypermobility. In fact, they have a hypermobility inpatient rehabilitation service. Which is of course, fantastic, but many of us cannot access these services because of our geographical location or because of oversubscription of the few services that are available. Better support and recognition in the hypermobility related disorders in primary care (GP) and help to get access to local service quickly would most definitely help prevent the need for the more specialist bespoke services and would also help increase local service knowledge of our needs.

So please help us to help you 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 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. Available until 31st January 2018


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.