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European Patient Forum – report on ‘ Added Value of Patient Organisations’

Posted By Donna Wicks, December 8, 2017
Report on the Added Value of Patient Organisations
European Patients Forum has publised a report to highlight the value of patient organisations as legitimate stakeholders in civil dialogue in health-related policies.The objective of the report is to emphasise the contribution of patient organisations in representing and voicing the situation of a specific population that would otherwise not be represented. The main activities of patient organisations are set out in four different areas: policy, capacity building
and education, peer support and research & development (both health and pharmaceutical).

What fantastic timing for the Hypermobility Syndromes Association? We have just launched our Giving GPs the Tools campaign, and are in the process of developing an eight week self-management programme for people with a hypermobility related disorder!

The report makes interesting reading.
Help us to help you by supporting our campaign. You can contribute by sharing our posts to raise awareness, tell us your story by emailing it to or donate to the campaign
You can do this by Just Text to HMSA13 to 70070 followed by 5 or 10 or donate to the campaign page on

Don’t forget there is 10% selected items in the HMSA shop Just use SALE-10% at the checkout.


Improving and Understanding Service User Involvement- Shaping Our Lives

Posted By Donna Wicks, December 7, 2017

This may be of interest to some of the HMSA members and social media users.

This report aims to improve understanding of good and bad experiences of service user involvement in the commissioning, design, delivery and evaluation of public sector services and the challenges faced by service users in negotiating their dual role of both being a service user representative and recipients of services. This report will be of interest to Disabled people who are service users and for people who design, manage and evaluate services in the public sector.
This was a user-led piece of research designed and carried out by Disabled researchers. It arose directly out of a Disabled person’s own concern and was undertaken by a Disabled People’s Organisation.
Improving Understanding of Service User Involvement and Identity

For more information on the report please use this link below. It is great to know that the HMSA is working along these guidelines.


You can donate via Just Text HMSA13 to 70070 followed by 5 or
10, depending on the amount you wish to donate.
Or you can donate directly on our campaign page on

Don’t forget there is 10% selected items in the HMSA shop Just use SALE-10% at the checkout.

The Hypermobility Syndrome’s Association Helpline (an overview) by Helpline volunteer, Steph. and HMSA Professional Team:)

Posted By Donna Wicks, December 6, 2017

The Hypermobility Syndrome’s Association helpline is run by trained volunteers, all of whom suffer from a hypermobility syndrome themselves. The aim of the helpline is to provide support to those suffering from any of the hypermobility syndromes, whether that is, Hypermobility Spectrum Disorder (HSD), any of the Ehlers Danlos Syndromes, Marfan Syndrome, Osteogenesis Imperfecta, Pseudoxanthoma or Stickler Syndrome, all are welcome under our umbrella!

The volunteers on the helpline provide a listening ear to those who call us, we will provide positive support and advice when appropriate. We get a wide variety of callers, from those wanting to talk about specific aspects of their condition that are affecting them, general advice on well-being and help in finding specialists that may be able to help them with their condition. We sometimes get calls from people who suspect that they might have a hypermobility syndrome and want advise about what to do. However, a lot of the callers are looking for somebody to listen to them, to provide a listening ear and to provide a bit of comfort.

We also get calls from professionals, including GPs or primary physicians. These calls are usually about finding services or other professionals who may be able to assist their patients. These calls are easily dealt with due to knowledge of our helpline volunteers.

Some GPs ask us to provide literature to them, so they can share it with their patient/s. Others just want to talk to one of the HMSA Professional Team and use us as a sounding board, whilst they work through the complex issues that their patient may be experiencing. These calls are increasing all the time and we are very pleased to hear from any professional who is attempting to identify and assist a patient with a hypermobility syndrome. We hope that due to the ‘Giving GPs the Tools’ campaign, these types of calls will increase.

The HMSA Helpline, is here for our 3Ps (patients/service users, professionals and providers of services). The volunteers in the helpline team are very dedicated and caring people who happily give up a few hours a week or a month to support those who need our help.

If you think you have the skills to assist on the Helpline or want to help in another way then please do get in touch. We are always recruiting volunteers and it doesn’t matter how many hours you can give us, you will still be an important part of our team.

If you want to support us by donating to the HMSA ‘Giving GPs the Tools’ campaign, you can do so by
Just Text HMSA13 to 70070 followed by the amount you wish to donate either 5 or 10.
Or you can donate on the campaign Virgin Giving page It doesn’t matter if its a small amount because every penny does matter.

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

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.

‘Giving GPs the Tools’ campaign – Need for Local Knowledge

Posted By Donna Wicks, December 4, 2017

Whilst we would like to see more specialist centres and more recognised ‘experts’ in all areas affected by a hypermobility syndrome, we acknowledge that in practical terms this would be difficult to achieve in the short term. What is not so difficult; is to ensure that all GP practices (and as many ‘other’ professionals too) are aware of hypermobility related disorders and HDCTs.

The HMSA hopes that with better training opportunities and by raising awareness of the hypermobility related disorders that rapid diagnoses can be made, which will reduce a lifetime of negative experiences of the patient in their health, medical and social care professionals.

Some people undoubtedly will need to be seen by specialists, who may or may not be experienced or believe in hypermobility related disorders. These people will always benefit by being confident that their GP can successfully navigate alongside them, ensuring that they see the right people, at the right time. The GP with knowledge of the hypermobility spectrum disorders will be able participate in the management discussions that will need to be had.

Help us to help GPs give you a better experience. Let’s work together to ensure that GPs understand the issues we face. This campaign will help people that are already diagnosed and those that are still waiting.

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.

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

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.