Latest News

HMSA Receives Grant From The Big Lottery Fund!

Posted By HMSA Editorial Team, November 5, 2014

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We would like to say a huge thank you to the Big Lottery Fund for helping us develop our Volunteer Programme. The Grant means we can continue to support our Volunteers, by providing essential training around the UK – such as Data Protection, Adult and Child Protection, and the Information Standard – meaning we can strengthen our network of Volunteers throughout the UK. 

Volunteering with the HMSA- we never stop looking!

Posted By Donna Wicks, October 31, 2014

imagesCALWJT78The Hypermobility Syndromes Association is always looking to increase on the 134 brand new and long term volunteers we have now. We have been growing significantly over the last few months as we only had 85 at the beginning of the year but a recent count up for new business cards revealed our progress!

If you would like to be part of a committed and well established volunteer team then please do email volunteer@hypermobility.org. It is our volunteers who make the wheels in the world of the HMSA turn and without them we wouldn’t be able to do half the things we do now…so give it some thought and have a read below for more information.

Our volunteers undergo an application process, similar to that as you would in a paid role, and this includes reference checks, DBS, and an informal interview. We will support you in your role, assist you with developing new skills and welcome you into a very friendly group. The volunteers, staff and medical advisors, in particularly Chief Medical Advisor, Dr Alan Hakim, work very closely with the team and you wouldn’t be expected to deal with something you were uncomfortable with. Our volunteers undergo annual training in Data Protection, using Social Media, Confidentiality, Safeguarding Vulnerable Adults and Children.  For those who wish to gain paid employment but need  experience first the HMSA is a great place to start, as many of  our staff and volunteers have gone on to gain paid employment based on their volunteer work.

untitledYou do not need to have lots of spare hours or have previous experience but a friendly and positive disposition, with a will to support other people through their journey in learning about the heritable connective tissue disorders or hypermobility syndromes is a bonus! We do ask that all volunteers are members of the charity but this is because it helps with a sense of ‘ownership’ as the HMSA does belong to its members.

 

Hampshire Group March 2014At the moment we need volunteer GROUP LEADERS with experience and knowledge of the hypermobility syndromes to run our groups throughout the UK. Please check our local group network to see if there is a gap near you. At the moment we have 25 groups but we need more and in particular in Northern Ireland, Wales and Scotland. If there is a group in your area already you may be needed as a DEPUTY LEADER so don’t let it put you off!

 

We also need people with experience in SOCIAL MEDIA to assist our very busy social media team! The HMSA has a forum, website, Twitter, Pinterest, YouTube, Flickr, Instagram, Tumblr, LinkedIn, Google+ and many Facebook pages!  A few hours here and there would be hugely helpful to the team. We particularly need help with managing the main HMSA Facebook page at present.

The Information Standard

As we hold the Information Standard we are looking for people to assist us with our INFORMATION PRODUCTION. This could be reviewing articles, helping to write them, seeking new material or assisting the Editor of the HMSA twice a year published Journal, or by assisting our Social Media Coordinator with the monthly e-newsletter.

Our HELPLINE is always busy and it is time to recruit again to help support the staff and volunteers who manage this busy resource. You would be talking to newly diagnosed people, people needing signposting for services and diagnosis and support from the HMSA. You may also be talking to medical, health and social care professionals who are looking for advice for their patients. You will need to feel comfortable on the phone and have very good communication skills, professional attitude and a good knowledge of the hypermobility syndromes.
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We always need people to FUNDRAISE as we are a very small charity. Please see the Charity Commission for our accounts. Funds raised are used to help run the charity, pay for events, programmes, research etc.

The HMSA is also looking for assistance from people who are skilled in WRITING GRANTS to enable us to continue to provide the Family Programmes, research activities, education days etc.

ACTION FOR DISABILITY AND WORK UK

If any of these roles are of interest, to find out more (with no obligation) please email Jen Patchett, Volunteer Coordinator and Social Media Coordinator by clicking here or Catherine Eves, National Groups Coordinator by clicking here

Referrals to Hypermobility Clinics

Posted By HMSA Editorial Team, October 26, 2014

We have been informed that St John and St Elizabeth Hospital is receiving referral letters from GPs to the Hypermobility Clinic, with the GP and patient thinking they are referring for an NHS appointment. The Hypermobility Clinic at St J and E Hospital is a Private facility.

GPs must refer to the relevant NHS Trust. A letter of referral to St J and E Hospital cannot be converted to an NHS referral. This has created a lot of additional admin for the team at St J and E Hospital as they have to write back to the GP to advise that the referral cannot be accepted.

If you are seeking a referral to a Hypermobility Clinic please see our list of recommended clinics and the referral process here

Have you used JustTextGiving?

Posted By Donna Wicks, October 25, 2014

Have you used JustTextGiving? To help us continue our work in supporting children and their families please consider donating to our JustTextGiving facility.

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Simply text: HMSA00 (zero zero) followed by the amount you wish to donate, to 70070. For example, HMSA00 £2

Any amount is appreciated in our fight to provide better services, earlier diagnosis and management in this complex, multi-systemic condition. Thank you

What the HMSA Does

Posted By Ben Cooper, October 24, 2014

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.