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Posted By Paul Gardener, June 9, 2013

The HMSA is the only charity offering both practical support and Information Standards Accredited health and care information to people who have a hypermobility syndrome. or who are involved in the care of someone with any of the hypermobility syndromes, including Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.

The Information Standard is a certification programme for organisations producing evidence-based health and care information for the public. Any organisation achieving the Information Standard has undergone rigorous assessment to check that the information they produce is clear, accurate, balanced, evidence-based, relevant and up-to-date.

This certification gives medical professionals confidence in the reliability of information from our website and publications, helping people with a hypermobility syndrome get the treatment they need.

Run by people affected by a hypermobility syndrome for people with a hypermobility syndrome, a number of the HMSA’s staff and volunteers are also medical professionals in their own right, which enables the charity to offer advice and support to relevant professionals (including social workers, GPs, consultants, physiotherapists, Occupational therapists, psychologists and teachers). The Hypermobility Syndromes Association (HMSA) is therefore one of the few charities, offering support both to people with a medical condition and the professionals treating and supporting them.

 

Support and advice for people affected by hypermobility

The HMSA is a dynamic charityproviding a network of support groups throughout the UK. All our Group Leaders are trained and have clear DBSs (previously called a Criminal Records Bureau check). The HMSA is proud that our groups are recommended by many hospitals and individual professionals because of our positive ethos and the dedication and professionalism of our Group Leaders.

• IS accredited website. ( dedicated professional members area under development)
• Internet forums for peer support, moderated to ensure they are safe and accurate (some areas are only accessible by members)
• Free Helpline for support and advice, 7 days a week
• Local support groups, run by trained volunteers*
• Locally run facebook groups* – secure places to ask questions and gain valuable peer support, moderated by trained volunteers.
• Residential conferences and hypermobility masterclass events offering a chance to socialise with others who understand life with a hypermobility syndrome and improve understanding of hypermobility syndromes and their management**
• 1:1 advice from trained staff.*
• Advocacy is offered on a case by case basis. (This is not a guaranteed service as it depends on staff time and also proof of diagnosis via a medical letter.)*

 

Education

We provide education to schools, sporting establishments and medical professions including consultants, GP’s, physiotherapists, occupational therapists, podiatrists, dieticians and psychologists, who wish to advance their knowledge and understanding of the hypermobility syndromes in all their forms.

• Patient focussed residential conferences and hypermobility masterclass events which can include lectures on various aspects of hypermobility and it’s management, group physiotherapy and hydrotherapy sessions.**
• Printed information – leaflets, booklets and posters – all of which meet the stringent standards set by the IS. (some of these booklets are included with membership packs)
• Monthly e-newsletter*
• Bi-annual Journals – in each issue we have articles written by our Medical Advisors and other members of the association, keeping our members informed of current progress in the world of Hypermobility Syndromes.* †

 

Focussed support for children and young people

We provide specific information for children and their parents to help families who often just don’t know where to turn.

We run specialist family programmes, where families can learn together how best to manage the many symptoms relating to hypermobility, gain confidence and ask any questions they may have.

• Specific ‘Kids and teens’ area of the website – with information at a level which children can easily understand, and schools can also find useful.
• ‘Youth journalist’ role – where each year a teenager is selected to write for the HMSA journal and website, building their confidence and communication skills.
• Sections of the journal specifically aimed at children and teenagers
• Hypermobility masterclasses and residential conferences have separate programs for children – encouraging good management and helping them address any concerns they have about their condition **
• Educational Support Facebook group run by Jenny Parris (a practicing school nurse) for parents to get advice on accessing the support available to their child.*
• 1:1 sessions with trained staff.*

 

Support and advice for professionals working with people affected by hypermobility

• Work closely with hypermobility related specialist service providers to improve their service provision, including running patient focus groups.
• Run training courses and seminars on hypermobility syndromes and their recognition and treatment for medical professionals.
• Access to advice from qualified medical, health and social care professionals who work for, or with, the HMSA. †
• A copy of the twice-yearly HMSA Journal in the spring and autumn. (Professionals can contribute to the Journal by submitting articles, case studies and research opportunities.) †
• Quarterly professional-only e-newsletter. (Professionals can submit information for the HMSA to share amongst other professionals, such as study days, conferences or research studies.) †
• Assistance with recruitment for research projects, access to non-identifying patient data, dissemination and the option of the HMSA being the ‘patient partner’. †

 

Raising awareness

• Stands at various events, both local and national, across the country, and at relevant medical conferences, such as the British School of Rheumatology conference
• Social media and website advertising campaigns
• Posters and awareness leaflets for GP surgeries, hospitals etc.
• News stories and press releases.

 

Research

Research into all aspects of hypermobility is key to gaining a better understanding of the needs of those with an hms and ensuring treatment provision. The HMSA contributes to research by directly funding grants or by co-applying for research projects with our Medical Advisors.
• Funding research projects
• Assistance with recruitment for research projects, access to non-identifying patient data, dissemination and the option of the HMSA being the ‘patient partner’. †

 

*denotes a members only benefits
**priority given to members
† denotes professional membership benefits


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.