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 firstname.lastname@example.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.