Background to project;
The Hypermobility Syndromes Association (HMSA), is a charity working with people, predominantly in the UK, who have; Hypermobility Spectrum Disorder (previously known as Joint Hypermobility Syndrome), and heritable disorders of connective tissue such as; Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, Sticklers syndrome, and other hypermobility associated conditions.
The conditions labelled above are long term health conditions in their own right but they are frequently associated with a wide range of comorbidities. As a result, multiple disciplines are involved in the diagnosis, treatment and management of people with hypermobility syndromes, across a range of primary, secondary and tertiary services, assisted by third sector organisations, such as the HMSA. It should also be noted that due to the genetic inheritance patterns, professionals may be working with a number of family members at any one time. And that even amongst a family group, symptoms are still very varied and therefore, member needs are very different.
From a ‘patient’ point of view, these services are often disjointed, with lack of service provider’s knowledge and no clear pathway available. Patients report that they feel disbelieved, frustrated and lack confidence in the professionals they see at appointments. 55% of the HMSA members who participated in a snapshot survey in 2012, report that it takes 10 years or longer to get a diagnosis. In the same survey, good care experiences were significantly improved when delivered by specialist services because of validation and confidence in the recognised ‘expert’ professional.
Lack of early diagnosis and access to treatment has a significant impact on the level of functional ability, increasing psychosocial issues with a wider impact on family, friends, employers etc. Many patients find that they end up retiring on medical ill-health grounds or have to leave their employment because of worsening symptoms. Many younger patients struggle to stay in education and do not continue further education as planned. A significant number of patients with the hypermobility syndromes are unemployed, and on DWP benefits. With changes to the benefit system in the UK, many patients find they are under pressure to return to, or gain employment, despite having a lack of skills needed to manage their symptoms or awareness of what can be done to make employment or further education achievable.
Medical, health and social professionals are increasingly struggling with a lack of resources and services to offer people with hypermobility syndromes. This means that professionals are finding it increasingly difficult to;
- give time to patients
- diagnose correctly
- follow up,
- treat and coordinate care
- prevent further disability
- reduce number of GP appointments
- reduce number of referrals to local services
- reduce number of referrals to ‘out of area’ services
There is a significant lack of resources for teaching people how to live well with their hypermobility syndromes. Incorporating third sector organisations into education services and service delivery can assist with meeting the needs of this population of patients without the need to refer out of area.
The Usual Pathways;
For the vast majority of cases, diagnosis and management of people with Hypermobility Spectrum Disorder, can be held at primary care level, with referral to secondary level only dependent on comorbidities and complexities, or to access various services such as physio, OT, podiatry etc.
For some patients, access will only be required to certain services as a ‘one-off’. Despite this many GPs, or primary physicians, appear reluctant to diagnose in-house, preferring to send patients through to rheumatology (the normal route for vast majority of HSD patients) or to genetics. Other hypermobility syndromes may need a secondary service input to assist with diagnosis but day to day treatment/ management can then be managed by the primary physician or GP.
Whilst the above may be the ideal pathway to follow; many patients have negative experiences, further complicated by the wide range of professionals that they have been previously seen, and develop a lack of confidence in their GP and therefore, a barrier to further management. In addition, the GP may not have the knowledge and skills to confidently work with this patient group and would benefit from access to advice and support from additional local professionals (or the HMSA).
For some people with either very complex issues or those with suspected rarer types of hypermobility syndrome, tertiary service input may be of benefit, and indeed be the correct means to proceed for the primary and secondary service professionals involved. However, the costs associated with tertiary referral, and the increase in demand for these referrals (greatly fueled by social media groups and the increased recognition that there are ‘experts’ at these centres), amongst this patient population need to be considered, and this cannot be a sustainable ‘normal pathway’ for all.
For this to change, GPs or primary physicians, need to develop their knowledge base and to also be supported by informed and experienced secondary service providers in the hypermobility syndromes. It would also be of benefit to all professionals in a given geographical area (and at all levels of service provision) if there were acknowledged ‘local experts’ in wide ranging disciplines, who could be called upon to discuss a patients needs, and to advise if to refer on, to whom and where.
To assist with this work the HMSA, staff and volunteers, has been trialling a new project which assists with the education and training of professionals of all disciplines, and those in senior management roles. The aim being to give the professionals confidence in their skills and knowledge, as well as in the services they may refer the patient to. And simultaneously, give patients the confidence that their needs have been understood, potential risks appraised and comorbidities recognised, leading to access to the best evidence based practice in treatment and management, either in their local area or in a few cases at recognised centres of excellence.
The HMSA charity staff, volunteers and medical advisors has been working within East Kent NHS service providers for the last 18 months; and will continue to develop and adapt the model for at least a further 2 years.
The initial project was started at the request of Dr Philip Bull, Consultant Rheumatologist, in Kent. Dr Bull enlisted the help from Dr Alan Hakim, (HMSA Chief Medical Advisor) and Donna Wicks, the CEO of the HMSA, who was previously a RMN retired on medical grounds due to EDS.
The project aims were to;
- To increase the education and improve outcomes for people with the conditions previously named
- To give confidence to the population of people in Kent with Hypermobility Spectrum Disorder (previously known as Joint Hypermobility Syndrome), Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, and other conditions with the complication of hypermobility related issues
- Increase knowledge, awareness and resources for East Kent medical, health and social care professionals.
- To build up a network of professionals with an interest in working more closely with the charity in a collaborative manner
- To reduce the number of people who would need to be referred ‘out of area’ and thereby reduce the cost to the NHS
- To build up a ‘HMSA Care Web’ of professionals, who would be willing to act as the ‘local expert’
Step 1 – HMSA Masterclass for People with a Hypermobility Syndrome
The first ‘HMSA Masterclass for People with a Hypermobility Syndrome (HMS)’ was run in 2015. The event was loosely based around the HMSA’s Model of Care, which includes,
- Validation; 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, accordingly, there is nothing wrong with the person. Each time, a person goes back to their GP, more tests are run and the same result, delaying diagnosis and increasing chances of disability etc. This is often complicated by the genetic inheritance nature of an HMS, and having children experiencing the same issues, which are also not addressed.
Validation is a key factor in successful management of a hypermobility syndrome.
- Education; People need to understand what a hypermobility syndrome is, and which one they have, and how to best manage their condition. The HMSA provides high quality evidence based information accredited by NHS England.
Education on a health condition can significantly assist with understanding what is happening and how to make informed decisions.
- Rehabilitation; This is not a formal rehabilitation programme. This is accessing the right services, at the right time and in the right place. This combined with increased knowledge of a health condition can significantly improve quality of life. At this stage 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 by incorporating knowledge of the hypermobility syndrome, pacing, pain management, exercise etc.
The HMSA’s Model of Care, is very much a dynamic approach, which is taught to all volunteers when supporting all the charity’s work. People using the HMSA are known to move forwards and backwards through the model and their needs are quickly established on first contact, enabling the charity to provide tailored individual support as needed.
In addition to the actual event, the HMSA offered 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 volunteers from the HMSA, who have already developed positive self-management skills and had substantial training by the charity.
The first event for people with a hypermobility syndrome was well attended and received by the delegates. Time was taken to listen to what delegates were saying were the problems they were facing in living well with their long term conditions in East Kent. The HMSA problem solved some of the difficulties faced by the delegates and agreed to address more individual difficulties on a case by case basis.
The HMSA Kent Model also aimed to and delivered three ‘HMSA Professional Hypermobility Masterclasses’ commencing in 2015. These events allowed access and information to over 150 East Kent professionals, and have been overwhelmingly positively received. This highlights that professionals are very interested in meeting the needs of their hypermobility syndrome patients. The delegates have been multi-disciplinary. A list of professionals who have attended will be found ……insert page here……………….
The HMSA has also co-chaired focus groups on specific areas to establish unique training and education needs amongst professionals, including paediatric services.
Furthermore, ‘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. This includes training sessions from experts including;
Dr Alan Hakim (HMSA Chief Medical Advisor, Consultant Rheumatologist)
Dr Nelly Ninis (Paeds. Consultant)
Dr Philip Bull (HMSA Medical Advisor, Consultant Rheumatologist, Alexander Teacher)
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 HSD Ambassador, Patient Expert)
Further details on the expert lecturers can be found .,…….page to be inserted here ……
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 Alexander Technique teachers, Pilates and Yoga Instructors. People from these professionals have also attended the Masterclasses.
Step 3- Providing a HMSA Kent Group Leader
A new Group Leader for Kent has been identified and introduced to the professionals at the last Masterclass. Dr Nikki Paiba, an anaesthetist who is also an EDS patient, has come on board to work within the project. Nikki’s role as a ‘professional/ patient’ will be to coordinate and run local groups in East Kent, with the theme of self-management being centre to the work of the group.
Each month the HMSA nominates one aspect of self-management, which is discussed and supported in geographical groups and also on social media groups. Nikki will initially be supported by Donna Wicks and Dr Philip Bull, and additional preparation work will be undertaken for Step 7.
Step 4 – Creating a ‘HMSA Care Web’
The HMSA is currently creating the ‘HMSA Care Web’, which will allow key professionals, from multiple disciplines, to be clearly identified. These will be professionals who are willing to be viewed as the local expert professional for that discipline.
This will help provide support to professionals from primary, secondary and even tertiary services. This is work which is currently taking place, and further information will be found ….tbc…. The identified professionals will be amenable to the collaborative approach with the HMSA and will form a core group which will help direct future work in East Kent.
Step 5 – Providing Resources
The HMSA is currently collating video recordings of all expert speakers which will be available for viewing on the website. These are targeted at the professionals working with HMS patients.
The HMSA will also be providing links to the up to date articles on ‘Hypermobility Spectrum Disorder’, and the new nosology for hEDS and other EDS syndromes, and related good practice guidelines. These can be found ….itbc…..
Professionals can also join the dedicated and popular Professional Membership Scheme, more details can be seen ….tbc….
Professionals can ask for more information or to have contact with one of the HMSA Professional Team by emailing email@example.com
Step 6 – CCG Level
The HMSA has also been successful in working with Sue Baldwin (CCG), representing one of the Clinical Commissioning Groups for Kent in having ‘hypermobility related disorders’ included on the MSK service needs. It is hoped that the other 4 Clinical Commissioning Groups will follow suit.
What about the future?
Step 7 – Successfully develop, recruit for and run a collaborative ‘HMSA and Kent self-management programme’
It is planned that the HMSA will produce a self-management programme, to be run over a 6 week period, in collaboration with professionals and services in the near future. This will be more than a pain management programme, in that it encourages future use of the HMSA as a first contact resource. The programme will need to be piloted and evaluated before more programmes can be run.
Frequently Asked Questions;
The HMSA has had many questions from both professionals and people with one of the hypermobility syndromes. To assist we have included the questions we have been asked below. Further questions can be sent to firstname.lastname@example.org
How was this funded?
The HMSA received a donation from The Rotary Club, nominated by Mrs Irene Green, HMSA Kent patient member, to assist with the education and development of this model in Kent.
However, we are pleased to say that the ‘HMSA Masterclass for People with a Hypermobility Syndrome’ was funded in part by the HMSA and ticket sales.
ALL three of the ‘HMSA Professional Hypermobility Masterclasses’ were funded by professional delegates themselves, which indicates the high interest amongst professionals in Kent to provide a quality service to Kent patients.
For the HMSA to run any HMSA Masterclass the expenses of our staff and medical advisors would need to be covered. Please email email@example.com for more information.
Is this model available for my area?
The HMSA Kent Model is planned to be transferrable across the UK initially. However, there is a lot of ‘behind the scenes work’ that would need to be carried out by those in the location in collaboration with the HMSA staff and medical advisors, to make it a successful project.
If you wish to discuss this please email firstname.lastname@example.org
Is the work in East Kent complete?
No. The HMSA will continue to develop the Step 7 as previously described. In addition, the HMSA will be in constant contact with the professionals who have attended the project, identifying and meeting any new information gaps.
The HMSA is also planning to run a ‘HMSA Patient and Professional Hypermobility Masterclass’ in the future. This will be a unique opportunity for both populations to come together and learn alongside one another. More information will be disclosed nearer the time.
Were patients involved in this project?
We have been asked this several times. The HMSA did involve patients in the ‘HMSA Masterclass for People with a Hypermobility Syndrome’ in 2015. We have also invited ‘patients’ to the other Masterclasses and paid close attention to the comments we have received. HMSA members have also been involved in the discussions around the entire project.