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The role of Patient Organisations.

Posted By Donna Wicks, December 5, 2017

 The role of patient organisations is essential to the development of services and education. The HMSA agrees with the European Patient Forum survey (2016), as an organisation that is targeting the 3Ps! Our 3 Ps include, patients (service users), professionals and providers of services. It is reassuring to know that we are working along the lines that this umbrella organisation states is good practice. Our GP campaign, ‘Giving GPs the Tools’ helps meet the stated objectives of the survey.

Please help us to help you, as we target the professionals who are responsible for our access to the services that we so desperately need.

GPs are the gateway; they hold the power to diagnose more common hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome, which should allow access more quickly to services such as, physiotherapy, occupational therapy, podiatry, orthotics and of course, referral to specific departments that deal with the complex issues we face on a daily basis.

GPs have access to the ‘whole picture’. They can look at one of their patients and acknowledge that something is going on, which they may not understand. It is always best practice to rule out physical conditions before labeling people as having psychosomatic or psychological problems.

It is true that GPs don’t have long to see patients but if patients are re-presenting with problems, that should be enough of a signal to allow time for considering what the bigger picture is. We don’t expect GPs to know everything about everything. But we do want GPs to look into what could be going on.

It is also true that GPs only get approx £136- £146 per patient. That is too cover all tests, referrals etc. That is not a great deal of money but we can save the GP practices money by assisting them with information and providing a clear pathway, which we are developing under the HMSA Kent Model (this will be rolled out across the UK).

We can also help give GPs the confidence to diagnose the most common hypermobility related conditions, such as; hypermobility spectrum disorders (previously joint hypermobility syndrome) and hypermobile Ehlers-Danlos syndrome. A quicker diagnosis, would save on un-necessary tests and referrals and allow patients to be sent to the right place at the right time.

Our information packs will help by providing information that could highlight the missing links in a patients presentation. All professionals, regardless of discipline, have a duty to continue with their education, whilst still in practice. We have developed a coordinated approach which will help to put the information in the hands of those who control our access to services that we may need.

The information packs will consist of;

  •  An introduction to the HMSA
  • Details on all the conditions we support (HSD, EDS, Marfan, OI, Stickler, PXE. This will include symptoms and management. It will be made clear that we support other hypermobility related  conditions
  • ‘What’s the connection?’ posters and a selection of our HMSA publications
  • Information on the HMSA Kent Model, which  is ready to be rolled out across the UK
  • Offers for training at a discounted rate
  • Information on local HMSA support groups, which can provide their patients with more comprehensive support
  • Information on the 8 week self-management programme, which will be  trialed in Kent in 2018 and rolled out across the UK.
  • Information on the professional resources section of the website
  • Access to support from the HMSA Professional Team
  • A clear clinical pathway detailing how to meet the needs of their patients by referring to the right place at the right time
  • A survey for GPs to complete, which will influence future work in primary care.

We need you guys to get behind the HMSA. We need your support to help drive the changes that are needed.

There are numerous ways you can help;

a)   You can volunteer to help disseminate information on the HMSA campaign by sharing social media posts or taking the information about the  HMSA to services

b)   You can volunteer to work within the HMSA Team and support us all, as we get going on this important piece of work, just email

c)    You can share our information with your local press. We have a press  release ready to go! Just contact 

d)   You can fundraise for the HMSA, we have a facility on our Virgin Giving  page for you to fundraise directly for the campaign. Just email and she will arrange for a pack to be sent out to assist you

e)   You can donate via Just Text HMSA13 to 70070 followed by 5 or 10,      depending on the amount you wish to donate

f)   You can donate directly on our campaign page on

g)   You can continue to send in your experiences about services in your areas, including GPs. We are collecting positive and negative experiences. We will also anonymise these and send them to Healthwatch National for them to use in their projects.

Please do join us as we campaign for better services for you. We can help you today and change the potentially negative experience for those who are yet to be diagnosed. We don’t want our children or their children to go through 10 years of being disbelieved to get a diagnosis.

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.