Healthwatch Calderdale have just released a new report which reflects feedback on Health and Social Care Services from Adults with Hypermobility Syndromes across Yorkshire and the Humber. Below, we explain, briefly, what the condition entails, before giving a little bit of background on the report, which is available to download – Download Hers (pdf file)
What is Hypermobility?
Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population, especially in childhood and adolescence, in females, and in people of Asian and African-Caribbean descent. In many people joint hypermobility is not problematic. It can even be a bonus, especially for sportsmen and women. However, the report is neither about athletes NOR party tricks. It’s about hypermobility linked to chronic ill-health. People who experience hypermobility with problematic and chronic symptoms can be described as having a hypermobility syndrome.
Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population, especially in childhood and adolescence, in females, and in people of Asian and African-Caribbean descent. In many people joint hypermobility is not problematic. It can even be a bonus, especially for sportsmen and women. However, the report is neither about athletes NOR party tricks. It’s about hypermobility linked to chronic ill-health. People who experience hypermobility with problematic and chronic symptoms can be described as having a hypermobility syndrome.
Hypermobility Syndromes
Hypermobility syndromes refer to the group of conditions in which symptomatic- hypermobility is recognised as a common feature. The most common of these is Hypermobility Spectrum Disorder (HSD). Other conditions of hypermobility include heritable disorders of connective tissue such as the Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta and Stickler syndrome. Whilst these are all conditions in their own right, hypermobility syndromes are complex conditions frequently associated with co-morbidities which require multi-
disciplinary health care teams for their diagnosis, treatment and management (Hypermobility Syndromes Association (HMSA), 2017).
disciplinary health care teams for their diagnosis, treatment and management (Hypermobility Syndromes Association (HMSA), 2017).
The Report
Feedback on Health and Social Care Services from Adults with Hypermobility Syndromes across Yorkshire and the Humber was published in July 2019 and authored by Karen Huntley, Dr Norman Sterling-Baxter, Dex Hanlon and Rio Kisjantoro. For more information about this work please contact Healthwatch Calderdale: karen.huntley@healthwatchcalderdale.co.uk – Tel: 01422 399433
This Report is a collaborative piece of work by local Healthwatch across Yorkshire and the Humber and was led by Healthwatch Calderdale.
This report is based on patient experiences. From the 183 people who have received a diagnosis, 141 (77.05%) reported that the process of obtaining the diagnosis was difficult or very difficult with 128 (69.95%) reporting the diagnostic process as leaving them with negative feelings about themselves, the NHS or certain medical professionals. In the qualitative data analysis similar proportions of negative experiences were described by the participants.
The report presents the results and the authors recognise such an overwhelmingly negative experience makes for difficult, if not, challenging reading. It was not their intention to be provocative or to hold any professionals to account. The aim of the report is to provide a starting point for developing and improving as many aspects of these NHS and social care experiences in the future.
It is not clear how many people in the United Kingdom are affected by hypermobility syndromes. Conditions of hypermobility are thought to be widespread though there is no up-to-date information regarding the exact
frequency in which they occur. Hypermobile Ehlers-Danlos syndrome (hEDS), is thought to be the most common genetic connective tissue disorder. Hypermobility is often misdiagnosed as fibromyalgia,
frequency in which they occur. Hypermobile Ehlers-Danlos syndrome (hEDS), is thought to be the most common genetic connective tissue disorder. Hypermobility is often misdiagnosed as fibromyalgia,
Observations gathered by a Healthwatch Calderdale staff member at a Management and Wellbeing conference in September 2017, run by the charities HMSA and EDS UK, highlighted that health services for people with hypermobility syndromes are often disjointed with no clear pathway available. There were approximately 300 delegates from around the United Kingdom in attendance at this conference. Many of these people also reported that medical professionals often lacked knowledge about hypermobility syndromes, resulting in delayed diagnosis for many, a lack of access to appropriate treatments and poor health and social care experiences, which in turn impacted upon people’s functionality and increased their psychological and social issues. Similar observations were collected by the same staff member in October 2017 at The Northern Patient Day run by the charity, Postural Tachycardia UK (PoTS UK) and EDS UK, which was attended by around ninety people.
Around the same time, Healthwatch Calderdale also began to hear from individuals with hypermobility syndromes via its signposting and NHS Complaints Advocacy services. These people wanted support in complaining about their NHS care for hypermobility and/or requested signposting advice on how to obtain a diagnosis. This feedback, together with the stories from people with hypermobility syndromes at the aforementioned events, prompted Healthwatch Calderdale to engage with people further on this subject.
