The Steps
The HMSA Education Model provides various elements, listed below, which can be combined to create local program for improving local service provision for the hypermobile community.
HMSA Self Management Courses for People with a Hypermobility Syndrome
The HMSA’s ‘Masterclass for people with a hypermobility syndrome’ is a day-long course based on the HMSA’s model of care. It includes input from both professionals and expert patients.
This is based on key concepts from the HMSA model of care which include:
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Validation: a key factor in successful management of a hypermobility syndrome.
People with one of the hypermobility syndromes, such as Hypermobility Spectrum Disorder or Ehlers-Danlos syndromes, often feel that the symptoms they experience are not believed by professionals. For example; the blood tests usually ordered by GPs, or primary physicians, come back with nothing abnormal detected, and therefore they are told there is nothing wrong. Each time, a person goes back to their GP, more tests are run and the same result, and no diagnosis. This leaves the individual feeling that they are not believed – and that advice given is not relevant or even safe to follow, because it seems to be based on the assumption that they are lying and/or over-anxious. Validation allows clear communication that yes, the symptoms are real – and from that starting point, good management techniques can start to be learnt. This is often complicated by the genetic nature of many HMSs, – having children experiencing the same issues, which are also not believed and are often dismissed as the product an over-anxious parent rather than a heritable condition. -
Education to help understand what is happening and enable informed decisions.
People need to understand what a hypermobility syndrome is, which one they have, and how to best manage their condition. The HMSA provides high quality evidence based information accredited by NHS England as well as practical advice based on personal experience of living well with hypermobility from its staff, volunteers, and members. -
Rehabilitation. Rather than attempt to provide rehabilitation programs, the HMSA helps patients understand how to access the right services at the right time. The charity also assists in establishing realistic expectations for using health, social and medical services.
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Positive self-management. The HMSA encourages people to manage their hypermobility syndromes through a good understanding of their condition, pacing, pain management, exercise etc.
In addition to the actual event, the HMSA offers a host of resources to promote self-management. These included a dedicated helpline, social media groups, residential weekends, local groups throughout the UK, and email support. These are predominantly run by HMSA volunteers who live with a hypermobility syndrome themselves, have positive self-management skills and have had appropriate training from the HMSA.
Educating Professionals – HMSA Professional Hypermobility Masterclasses and Seminars
The HMSA Education Model can also ‘HMSA Professional Hypermobility Masterclasses’ These ‘HMSA Professional Hypermobility Masterclasses’ have allowed the charity to share knowledge from its globally recognised medical advisors, on specific aspects of hypermobility syndromes and best practice guidance in management and treatment. These can include sessions from experts including;
The HMSA Education Model can also ‘HMSA Professional Hypermobility Masterclasses’ These ‘HMSA Professional Hypermobility Masterclasses’ have allowed the charity to share knowledge from its globally recognised medical advisors, on specific aspects of hypermobility syndromes and best practice guidance in management and treatment. These can include sessions from experts including;
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Dr Philip Bull (HMSA Lead Medical Advisor, lead clinician for the HMSA & Kent Hypermobility Network, Consultant Rheumatologist)
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Dr Alan Hakim (HMSA Chief Medical Advisor, Consultant Rheumatologist)
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Dr Jane Simmonds (HMSA Medical Advisor, Physio Adolescents / Children)
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Professor Qasim Aziz (HMSA Medical Advisor, Neurogastroenterlogist)
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Dr Jessica Eccles (HMSA Medical Advisor, Consultant Psychiatrist/ Researcher)
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Jo Southall (Independent Occupational Therapist)
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Hannah Ensor (HMSA chair, Patient Expert)
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Jeannie Di Bon (Movement Therapist)
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Kim Clayden (Solution-focused Psychotherapist)
These can be tailored to various professions and have included: physiotherapists, GPs, OTs Psychologists, rheumatologists and neurologists.
Multiple training options available providing a solid and practical understanding of hypermobility syndromes – tailored to the audience.
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Mini Masterclass online – 2-3 hours
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Lunch and Learn online – 1 hour
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Masterclass online – Full day with 6 speakers
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Masterclass live in a venue (coming soon)
The feedback from professionals has been overwhelmingly positive, with professionals at all levels finding they are better at recognising hypermobility syndromes, and initiating appropriate treatment and management in many patients whom they would previously have not known how to help.
The HMSA can also co-chair focus groups on specific areas to establish unique training and education needs amongst professionals, including paediatric services.
These events also allow the charity to encourage a collaborative approach in supporting patients by using the charity for meeting the needs of complex psychosocial issues and to offer realistic expectations of service provisions, whilst ensuring services provided are to a high standard. In addition, to supplement the prescribed services that are supplied by the NHS, we have encouraged the use of personal trainers/fitness professionals, Alexander Technique teachers, Pilates and Yoga Instructors who have attended our training sessions.
Creating an ‘HMSA Care Web’
As part of the project, the HMSA can support areas to create a care web which will allow key professionals from multiple disciplines within the area, who are willing to become the local hypermobility syndromes lead for that discipline to be clearly identified.
This will help provide support to professionals from primary, secondary and even tertiary services.
Providing Resources
The HMSA website is kept up to date providing information on the latest research and information, including video recordings of some of the HMSA’s Masterclass lectures, and from the HMSA’s residential conferences, and other relevant resources. You can find many of them on our HMSA Education Model Resources page LINK.
Professionals can also join the popular Professional Membership Scheme; more details can be seen in our ‘become a member’ section.
Professionals can ask for more information or to have contact with one of the HMSA Professional Team by emailing professionals@hypermobility.org
CCG Level
The HMSA has produced draft guidance for discussion with Commissioners in East Kent which you can read here: (HMSA_-_Guidance_for_Commissioners_2020_06.pdf) .This is under development and we are happy to offer guidance on relating to commissioning.
