Only a few more days until the Hypermobility Syndromes Association (HSMA) launches its ‘Giving GPs the Tools’ campaign!
This incredibly important awareness and educational campaign will go live November 30th, 2018!
‘Giving GP’s the Tools’ is HMSA’s new educational/awareness campaign, launching on November 30th, targeting general practitioners (GP’s) with education and training resources. EDS Wellness is helping spread the word on HMSA’s new initiative and we want to hear from you! Below is information copied and shared with permission from HMSA’s Facebook page.
“It will help everyone who are already diagnosed, as well as those who are yet to be so. Over 55% take 10 years or longer to get a diagnosis. I was one of these people, as was my Mum and children. If we could have had help sooner it would have given us so much more support and understanding of how to live well with the conditions we have.
The vast majority of hypermobility spectrum disorders can be and should be, diagnosed by a GP. The diagnosis is not necessarily a complicated one but too often GPs don’t know how to diagnose or that such a diagnosis exists. The diagnosis criteria for common hypermobility spectrum disorders can be found on our website hypermobility.org. Once GPs do make that diagnosis, they often do not know how to, or where to, start in the management of the varied systemic issues that our community can face. The HMSA is here to support this process by providing information and resources to all types of professionals, especially GPs and their patients. Increasingly, we are being contacted by GPs and other professionals but we need to do more!
Just one of the HMSA’s aims throughout this campaign is to provide a resource section for GPs (and other health and medical professionals) on our website. This will enable GPs to know exactly what they should be doing to meet the needs of their patients. Hopefully, we will hear less of the comments made to the HMSA in the future because of our work in the ‘Giving GPs the Tools’ campaign. The below is just a few of the comments we receive via our [email protected] email account, social media platforms, group sessions or helpline. We have made them anonymous to protect the individuals who contacted us:
“I have a diagnosis! I am so relieved! I feel believed. All I am doing is sitting here crying” – anonymous comment.
“I have my diagnosis. Now what do I do? Who do I see?” – anonymous comment
“All I want is to be believed. There is no point in going to my GP; they just fob me off with pain killers and do nothing for me. I have no one to help me. I have been told I have been placed in the working group for ESA. I can’t work! I sleep all the time and I can barely walk.” – anonymous comment
If you can relate to these comments, then help us to help your GP give you a better service. Help us to educate your GP into what your needs are and who and when to refer…itsnot rocket science but not much training is giving during standard medical training or following it. So we aim to change that through a variety of interventions. The campaign will be an enormous help to people with Hypermobility Spectrum Disorder or joint hypermobility syndrome, Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, PXE and Stickler syndrome.
More information can be read on the charity Facebook page /TheHMSA.”