Latest News

POTS UK Masterclass for Healthcare Professionals – 8TH SEPTEMBER 2017

Posted By Donna Wicks, August 15, 2017

Healthcare professionals are invited to attend a PoTs Masterclass on the 8th September 2017.

Our colleagues at PoTs UK and leading Consultant Cardiologist, Dr Nick Gall (Kings College Hospital),  have organised training for healthcare professionals in London. This is an exciting opportunity for professionals and their continued professional development.

For more details please see the attached document or contact info@potsuk.org

More details can also be found on the following website www.potsuk.org
Venue ; Olympic Studios, 117-123 Church Rd, Barnes, London, SW13

Cost £30
RCP approval for 6 CPD credits
We are delighted to announce this meeting in London at this celebrated former recording-studio, The venue is close to the major transport hub of Hammersmith, with excellent links across London and out to Heathrow.
We have a stellar line up delivering the latest sounds in the world of postural tachycardia syndrome.
A light breakfast, coffee and a delicious lunch will be provided.


To book, copy/paste the following into your browser
https://potsmasterclasslondon2017.eventbrite.co.uk

PoTS Masterclass CPD2017

Exciting News! HMSA and EDS UK Residential Conference

Posted By Donna Wicks, May 12, 2017

The HMSA and EDS UK are proud to announce that we are to run a joint residential conference, based on ‘Management and Wellbeing’ later this year.

The dates are 30th September to 1st October 2017 and the venue is Chesford Grange, Warwick.

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This will be the largest conference for this population of people in Europe, with space for 350 delegates and we are looking forward to meeting you all there. For many years the members of the HMSA and EDS UK have wanted the charities to work more closely together and we are happy to be able to show you some of the results of our work at this conference.

The conference will focus on how to live well with the conditions that both charities support.

The event is suitable for ALL HMSA members, including those who have Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome etc. It is an wonderful opportunity for people with the above conditions, and those with HSD (JHS) and EDS, to meet with each other and help shape the future work of the charities.

Of course, we will be bringing globally recognised experts along to share their knowledge and skills. Additionally, we are also running a childrens and teens programme. The programme details are still being worked on and we will of course update you as soon as we can.

We are very excited here at the HMSA, and we know that spaces will sell quickly, so please do join us and visit the web page as soon as possible to register your interest.

Please register your interest to keep updated on the conference and be the first to hear when tickets are released:

https://www.ehlers-danlos.org/health-and-wellbeing-conference-2017/2017-management-wellbeing-conference-register-interest/ 

HMSA ‘Our Work in Action’; Professionals #HMSAware

Posted By Donna Wicks, February 26, 2017

Hypermobility Syndromes Awareness week is drawing to a close, we’ve learned loads from you guys and hope we’ve been helpful to you!

A significant part of the HMSA’s work is in educating professionals, on the impact of living with one of the hypermobility syndromes it supports.  The main reasons for this include the facts that many of our members have such poor experiences in using the services they are being referred to. A snapshot Patient Experience Survey, of HMSA members, was taken a few years back that indicated that 55% of members take 10 years plus to gain a diagnosis of Joint Hypermobility syndrome, now known as part of the Hypermobility Spectrum Disorders. (This survey was undertaken before the HMSA brought all Ehlers-Danlos Syndromes, Marfan syndrome, Pseudoxanthoma Elasticum, Osteogenesis Imperfecta and Stickler Syndromes under its umbrella.)

The survey also showed that the members who were able to see professionals who were ‘hypermobility experts’ or involved in ‘hypermobility services’ had much better experiences. This included physiotherapy, rheumatology etc.

It was also clear via our work at that time, and in discussions with professionals, that most professionals did not receive any training on hypermobility syndrome when they were qualifying. Some professionals received training post-grad but this was limited. Of those who did, training usually looked at the ‘normality of hypermobility’ and not the ‘syndrome’ aspect that many experience.

The HMSA commenced working closely with the services allocated to hypermobility (‘hypermobility clinics’) to feedback the experiences of patients using them in 2008. This was received very positively by the service professionals and of course, an element of this work continues today.

We now work very differently and in recognition that not all members can travel hundreds of miles to see a recognised expert in hypermobility or attend a clinic. Additionally, it is in fact, the responsibility of all geographic areas to supply’ fit for purpose’ services, which meet the needs of the people in their catchment area. Some of our work has been delayed by the changes to the NHS commissioning and provision of services but we are now starting to work more closely on a commissioning level.

The HMSA feels it is important to ask service providers to take responsibility for the education of professionals working in services where they are likely to meet people with a hypermobility associated condition. This in reality is ALL services; including neurology, orthopaedic, gynaecology, gastroenterology, maxofacial etc. The more obvious ones include; physio, pain management, OT, rheumatology, genetics etc.

To assist with this the HMSA can now set up a HMSA Professional Masterclass in areas where we are asked. The funding of these needs to come from the service providers, or the delegates themselves, as we do not have ‘spare’ funding but this has not been a barrier in our experience.

To complement all of this the HMSA is also currently trialling a new HMSA model in Kent. This model includes the HMSA educating professionals, and is backed up by the work that the HMSA does with their patients. We have been able to run several Masterclasses to enable the education of the professionals in that area. This work has also allowed us to work on building a ‘care network’, which our Chief Medical Advisor, Dr Alan Hakim, explained to the professionals during his presentations. Part of the HMSA Masterclasses include, telling professionals what the HMSA has to offer for their patients. For example; most of our information is free of charge on our website, and the Helpline and open Facebook pages are there to support everyone.  We also offer more individualised services and a membership scheme, which their patients can also access.

The HMSA has exciting additional plans which will directly assist Kent patients with a hypermobility syndrome. These will be announced as soon as our plans have been finalised!  In addition, there is a lot of ‘behind the scenes’ work going on to use what has been learnt from Kent to help people throughout the UK and benefiting our global members too.

Once we have finished assisting Kent and reviewed the outcomes, we will be looking at running other programmes throughout the UK. The programmes are not quick fixes, they take a lot of organisation and professionals need to be able to free up time from seeing patients, to actually go and attend the Masterclasses.  Obviously, people with a hypermobility associated syndrome will instantly benefit from seeing professionals who have had training. But it is probably more realistic to see this as a long term model, with several smaller goals achieved along the way.

A new snapshot survey will be undertaken in the next few months to assist us with setting objectives for the next few years. So please keep a look out for it to be announced in the e-news and in closed FB groups.

 

What we need to do now is to build up a database of professionals and services recommended to the HMSA because of a ‘positive experience’ by users. So if you have had a good experience in attending any of the services, regardless of department, then please do let us know.  We are also very interested in hearing what GPs are known to be supportive and who understand about the conditions we support.

You can send us the details to info@hypermobility.org  or use our social media*

We will collate this information;

  • To give to people who need a GP or other professional or service in a specific area (something we are asked on a daily basis)**
  • To give feedback to services
  • To target for HMSA Professional Masterclasses

*Please note; any negative comments naming professionals directly on our social media will be removed. This isn’t because we don’t care. We do! But to be fair, any professional who is named as providing a poor service should be able to offer a defence, rather than being found automatically guilty! We hope that you will support this.

** Please note; With NHS services it is often the department that your GP needs to send a referral to and not a named professional.

 

HMSA Work In Action; Hypermobility Spectrum Disorder

Posted By Donna Wicks,

Well….yesterday a very distressed mum called the HMSA for support and this is what she told us.

Her 14 year old  daughter had been regularly dislocating her elbows and  right knee without much trauma, for a couple of years since  puberty. Now Annie was scared of school in  case someone bumped into her and caused another dislocation and she was also embarrassed of being in her PE kit as she was covered in bruises with no recollection of their cause.

The tired schoolgirl has fallen asleep during reading

Her mum listened to Annie crying with persistent pain and  watched her daughter sleep on the sofa, exhausted with persistent fatigue. Over the last six months her daughter was suffering from gastrointestinal symptoms, feeling constantly sick and reluctant to eat as it caused tummy pain.  
To make things worse she had chronic constipation and was suffering from an irritable bladder leading to incontinence. Every time she stood up Annie felt exhausted and faint. Sh esuffered from palpitations and an inability to regulate her temperature.

Annie was previously very popular and a fantastic gymnast. She was a typical teenage girl to all intents and purposes. But now Annies  friends had disappeared and the local education authority were concerned about her attendance at school. Annie was depressed, isolated,living with persistent pain and a host of symptoms which her GP didnt know what to do about.

Annies Mum did some research and realised that she may have a one of the hypermobility syndromes. She called the Hypermobility Syndromes Association for advice and support.

This is a typical case of  onset in teenagers with regards to some of the hypermobilitysyndromes.

Please help us to support Annie and her mum in getting the right information, and the right services, to improve her quality of life so she can start living it again!

Just Text 70070 followed by HMSA13 £5 or an amount of your choice. Dont forget thespace between 13 and the pound sign.

Thank you for reading.

Volunteering the Flexible Way! #HMSAware

Posted By Donna Wicks, February 25, 2017

Without our volunteers, the HMSA would be at a complete standstill. Having only 2 part-time paid staff, means that the day to day work of the HMSA, is completed almost entirely by our wonderful and passionate team of volunteers. We do not have a physical office for volunteers and staff to congregate in, instead we all work virtually the majority of the time; liaising with each other by teleconferencing or email! This makes our achievements so much more amazing and we are all very proud of the work we do.

A few times a year our volunteer Team Leaders and Team Members meet up for training and to discuss  the objectives of the charity. We are just about to meet up to discuss the impending changes to the categorisation of EDS, and the new  diagnosis for people with  Hypermobility Spectrum Disorder. We have  volunteers up and down the UK, and we promise we are listening  to all our overseas members and starting to look further away!

Volunteering for the HMSA has to be a good experience.  People need to feel comfortable in the work they do for us and they are never without support. Each volunteer has a nominated Team Leader, who is responsible for the volunteering experience of those that they lead.  In addition, our Volunteer Coordinator, Brenda Jones, is always around if needed for advice and support. We provide full mentorship to make sure our volunteers continue to feel rewarded and valued for the work they do. We help to provide goals for individuals to work towards and we can work with the DWP to assist with getting back to paid work if that is what the volunteer wishes.

Every volunteer who has face to face contact, or deals with any vulnerable person, must have full current DBS certification. It is important to us that our members feel comfortable and safe when using our services.

All organisations that have volunteers need to be able to offer training to equip people with skills needed for the role they choose.  The HMSA is very keen to ensure we match the right person, with the right role. Whether it is for our;

  • helpline, which took just under 900 calls last year,
  • social media groups, which are over most of our social media platforms
  • shop, which sends out membership packs, literature and  our HMSA branded merchandise across the world,
  • Information Standard process, we were one of the first charities to successfully gain accreditation, leading the way for many others,
  • national groups, which assist with self-management, and (where volunteer group leaders are available)  our local member support groups.

and much, much more.

Many of our volunteers go on to gain employment with skills they have developed through their work with the HMSA and through the bespoke training that we offer.


Not all our volunteers help us on a full time basis; the HMSA aims to make volunteering easy! This means we will be flexible to your needs (excuse the terrible pun!). If you wish to only do 2 hrs a week, we will find a role for you. If you have a specific role in mind, we will let you have a go and see how it works for you. If you want to volunteer but don’t know what you want to do, we will use our application and interview process to match you to a role.

 


Volunteering with the HMSA is a dynamic process, driven by passion for assisting people with Hypermobility Spectrum Disorders, or Marfan, EDS, OI, PXE or Sticklers, and for most it is a massively rewarding way of staying well informed, while helping themselves and others to live well with hypermobility syndromes. You don’t need to have one of the conditions to volunteer with us. We are just about to start recruiting people who have no hypermobility related conditions but wish to help the charity on its mission.

A few of the roles our volunteers play are very involved and time consuming (Not relying on paid staff, helps keep our overheads down), but most others require just a couple of hours a month. For more information about volunteering please e-mail volunteer@hypermobility.org.

You can be as much involved with the charity as you like, after all, we’re here to serve you and nobody else!

To support the work we do please Just Text “HMSA13 £5” (or your preferred amount) to 70770. Your donation is appreciated and goes directly to members support, we are volunteer run so we don’t have large overheads.


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.
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