Charities have to be flexible to meet the needs of all, including medical professionals.
The Hypermobility Syndromes Association (HMSA) has had a very busy productive few months and continues to evolve as the work of its team develops to incorporate the needs of members and service users. To reflect our changing role and the differing hypermobility syndromes or heritable connective tissue disorders we work with the HMSA has changed its logo and branding. Part of our rebranding has led to the end of the old newsletter and the production of the 54 paged ‘HMSA News and Views Journal’ in full colour with medical and member articles.
Interestingly, the HMSA has noted and evolved over the last few years to include reaching out to more than the sufferers of these complex and multi-systemic conditions. Our work is increasingly with the multi-disciplinary professionals working with them. Evidence suggests that professionals are coming to us for more information and guidance and this may be related to gaining of the Information Standard last year, which has enabled confidence, as well as the hard work of the HMSA team. The HMSA has been involved in delivering masterclasses in hypermobility syndromes for medical and health professionals throughout the UK and statistical feedback indicates it has been well received. In addition, the HMSA has co-run focus groups in and provided additional support to hospital services at their request. The professionals report relief that there is an organisation such as the HMSA, who has qualified health and medical staff employed and volunteering with in the team, who can assist their patients with the most complex needs.
In particular, our Education Development Coordinator, Jenny Parris (also a school nurse), has been assisting with hospital-based programmes for parents and children in Southend, which has led to additional closer working relationships. Often professionals are limited with what they can do to support these patients and using the HMSA opens a wider network of support. To further underline the need for the Third Sector to be more involved in services the HMSA’s CEO, Donna Wicks, is speaking at the BSR’s (Special Interest Group on Heritable Connective Tissue) this July on ‘Plugging The Gap’.
Throughout Ehlers-Danlos Awareness Month the Hypermobility Syndromes Association is running many Family Programmes throughout the UK to assist members and delegates in learning how to manage their often generational, complex and multi-systemic conditions. The HMSA has also been awarded a grant by Genetic Alliance to enable it to run a ‘Masterclass Hypermobility Family Programme’ in Kent in September.
The biannual ‘Patient Conference and Residential Weekend’ at the Hilton St George in Staffordshire is in July and the take up on the conference of service users/members is now well over 200. The facility hosts the Football Associations training and rehabilitation services which we are making full use of. The adult programme is under the direction of Dr Alan Hakim, Chief Medical Advisor of the HMSA and ARMA Trustee. The adults will have choices of lectures with key specialists working in the field, workshops, taster sessions and 1-1 clinics. Whilst the younger members are undergoing the HMSA’s adapted pain management programme where they will develop their own personal strategies for coping with pain and fatigue, a plan to increase their activity and set a realistic goal to be achieved by Christmas. The theme of the weekend is based on education allowing people to self-manage with confidence.
We have now changed how our network of local support groups’ work throughout the UK to include themed self-management subjects, which are explored and or speakers invited to attend to discuss during the group process. This also feeds into our social media work for that month. This has been incredibly successful and increased group attendance and allowed for increased dissemination of information.
These days no charity can stand still and survive, but too much change without considerable thought can be of equal detriment. Yet the HMSA is confident that our continual evolvement to meet the needs of both patients with the conditions we serve but also the professionals charged with their care will lead to a better future for all.
For more information on the work of the HMSA or its events please visit the website www.hypermobility.org