So, I’ve watched the House of Commons debate on hypermobility syndromes featuring @CWhittakerMP @JimShannonMP @HollyLynch5 and @Jochurchill4 and read the transcript. I’d like to offer some thoughts based on my background knowledge and experiences THREAD /1
I believe I am in a fairly unique position in my ability to comment on this topic. I’ve been a pharmacist for over 20 yrs working in or with the NHS. I have worked in community pharmacy, general practice, and as a lead primary care pharmacist, managing NHS prescribing budgets /2 
I have also worked in NHS clinical commissioning in planned care service redesign, including working on specialties such as orthopaedics, dermatology, gynaecology, and service transformation. I have also worked in research. /3 linkedin.com/in/lisa-jamies…
I’m also now a qualified nutritionist who has conducted research in a hypermobile Ehlers-Danlos Syndrome (hEDS) patient group. (And I received a distinction for my nutritional medicine MSc and also an award for my work! 😉) /4
And, importantly, I am also a patient with hypermobile Ehlers-Danlos Syndrome (hEDS). I was officially diagnosed 5 years ago at age 41. This was despite having signs and symptoms since early childhood. I have over 40 years of lived experience of hEDS. /5
Five years ago, during an acute illness with a spontaneous spinal cerebrospinal fluid (CSF) leak, I taught myself how to manage my hEDS-related symptoms with a nutritional approach via a combination of diet and nutrient supplements. /6
I had to take about 9 months off work with my CSF leak. After a long and arduous recovery, I am now back to working full-time and feel the healthiest I have felt my whole life. My stamina for pain-free activity is probably the best it has ever been. /7
Since adopting my nutritional approach to managing my hEDS-related symptoms over 5 years ago, I have also been able to massively reduce my use of prescription and over-the-counter medicines #deprescribing /8
I have given talks about my experiences to a variety of audiences and have been involved in educating patients and healthcare professionals about hypermobility spectrum disorder (HSD) and hEDS, including why I think nutrition is so important /9 youtube.com/watch?v=QdpJzH…
I tried for over 4 years to obtain funding to test whether my experiences with a nutritional approach to managing my symptoms were reproducible in others with hEDS, but have been unable to secure the necessary funds for my research. /10
I keep up to date with NHS policy, and have read the @NHSEngland Five Year Forward View, the Next Steps on the 5YFW and the 2019 NHS Long Term Plan (all from cover to cover – yes I am that nerdy!) and I keep abreast of NHS transformational change /11
I have read the @NHSEngland specialised commissioning service specification FOR COMPLEX EHLERS-DANLOS syndromes (which hasn’t been updated since 2013) and have conversed with people who work in specialised commissioning /12 england.nhs.uk/wp-content/upl…
I also keep a close eye on new developments with regards to innovations in the NHS, including the Accelerated Access Collaborative and the work of @nicolablackwood on ‘rare diseases’ (who has also been diagnosed with hEDS). /13 gov.uk/government/new…
I have helped to educate other healthcare professionals about HSD and hEDS, and was also involved in the development of the @rcgp Royal College of General Practitioners Ehlers-Danlos Syndromes clinical toolkit /14 rcgp.org.uk/eds
I have been impressed with the work undertaken by @hwcalderdale and was heartened by the enthusiasm and knowledge displayed by the (small number of!) MPs during the recent House of Commons debate. It’s a pity that @MattHancock missed it! #HSD #EDS /15 hansard.parliament.uk/Commons/2019-1…
However, I want to highlight some issues I believe are relevant, and why I think that the diagnostic and treatment odyssey continues for people with hypermobility syndromes, and especially, hypermobility spectrum disorder (HSD) and hEDS /16 gov.uk/government/spe…
Firstly, there is NO HIGH QUALITY EVIDENCE that hEDS is a rare disease, and neither is HSD, and so I believe we need to stop calling them RARE. The 1 in 5,000 prevalence statistic is based on an estimate, not on research /17
If hEDS/HSD were truly rare, then they should be included in the @NHSEngland specialised commissioning service specification for complex Ehlers-Danlos syndromes. But they are not included, and so people with hEDS and HSD cannot access these services /18 england.nhs.uk/wp-content/upl…
The responsibility for commissioning services for rare diseases sits with @NHSEngland Local Clinical Commissioning Groups are responsible for all other care. Whilst hEDS/HSD are described as RARE, local commissioners are unlikely to prioritise them /19 england.nhs.uk/wp-content/upl…
I have met many people with HSD/hEDS. From extensive reading, and my personal experiences in research, education and clinical settings, I know these conditions are common. One estimate suggests there could be up to 2 million people affected in the UK /20 ehlers-danlos.com/pdf/2017-FINAL…
Referring to hEDS/HSD as ‘rare’ diseases, means that primary care healthcare professionals are less likely to learn about, look for, or diagnose them. They are more likely to prioritise their continuing professional development on other conditions /21
MANY people are continuing to receive inadequate care. My MSc research showed that people with hEDS are bouncing around different parts of the NHS, for years, sometimes decades, seeing many different healthcare professionals, before they can find someone who can help them. /22
I have many ideas about what I think is needed to change the situation, to improve the experiences of care, and improve quality of life for people with hEDS & HSD. However, the ongoing lack of funding in this space means that I am unable to contribute my ideas and experience /23
Having worked in primary care and in general practice, I am certain that with increased awareness and knowledge, GPs could spot, diagnose and help to manage Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS) /24
I also believe that physiotherapists, pharmacists, nurses, dietitians and other allied health professionals need to have more awareness and knowledge of HSD and hEDS, as they are seeing these patients all the time, but they just don’t realise that they are. /25
I continue to feel very frustrated on behalf of my fellow hEDS (and HSD) patients, that they are unable to access the holistic multidisciplinary care that they need. /26
The situation needs to change urgently, so that the many children and adults (predominantly female), affected by HSD or hEDS, may be properly supported to (hopefully) reduce their symptoms and improve their quality of life, like I have. /27
The @NHSEngland Long Term Plan has a huge focus on prevention. Investment in appropriate multidisciplinary services for HSD/hEDS will be needed, to help people early (incl paediatrics), to try to prevent deterioration in health status, and to improve outcomes/quality of life. /28
@NHSEngland If you’ve made it this far, thanks for reading! I’d be really interested to know whether you agree with me, what you think about why the system is letting patients with HSD or hEDS down, and why people are not being helped? /End
