Professionals The Kent Model Kent Model: The Steps The Kent Model provides various elements, listed below, which can be combined to create local program for improving local service provision for the hypermobile community. HMSA Masterclass 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: 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. 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, advocacy 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 substantial training from the HMSA. Educating Professionals - HMSA Professional Hypermobility Masterclasses and Seminars The HMSA Kent 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; Dr Alan Hakim (HMSA Chief Medical Advisor, Consultant Rheumatologist) Dr Nelly Ninis (Paeds. Consultant) Dr Philip Bull (HMSA Deputy Chief Medical Advisor, lead clinician for the HMSA & Kent Hypermobility Network, Consultant Rheumatologist) Dr Jane Simmonds (HMSA Medical Advisor, Physio Adolescents / Children) Ann McCarthy (Physio Adults) Professor Qasim Aziz (HMSA Medical Advisor, Neurogastroenterlogist) Dr Chad Shepherd (Psychologist) Dr Jessica Eccles (HMSA Medical Advisor, Consultant Psychiatrist/ Researcher) Donna Wicks (HMSA CEO, RMN retired) Hannah Ensor (HMSA chair, Patient Expert) These can be tailored to various professions and have included: physiotherapists, GPs, OTs Psychologists, rheumatologists and neurologists. Shorter seminars providing a solid and practical understanding of hypermobility syndromes - tailored to the audience - can also be given by the HMSA. 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 have also allowed 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. Providing an HMSA local Group Leader The local group leader is a key part of the Kent Model. This is a local patient who is trained as an HMSA volunteer, and, with support from the charity, can help to provide support to local members through the local group.. Creating an ‘HMSA Care Web’ As part of the project, the HMSA can create an ‘HMSA 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 Kent 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 [email protected] CCG Level Working with the local CCG to include hypermobility related disorders in the relevant service development plans.