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Cannabis-based products, chronic pain, and hypermobility-related disorders

Posted By Donna Wicks, November 14, 2018

                      

Statement from The HMSA, the Ehlers-Danlos Support UK, and The Ehlers-Danlos Society regarding changes in the law in the United Kingdom

12th November 2018

This statement is for people with chronic pain and hypermobility disorders such as hypermobility spectrum disorder and Ehlers-Danlos syndrome. It is for people in the UK, or non-UK patients being treated by doctors in the UK.

As of the 1st November 2018 the UK Government has changed the law such that doctors can prescribe cannabis-based medicines.

However, the doctor must be a specialist consultant, and the conditions for which these medicines might be used at present are multiple sclerosis; epilepsy; and nausea and vomiting caused by chemotherapy. Even then it must be that all other treatments have been tried first, and the risks and benefits considered carefully.

Currently there are no licensed cannabis-based medicines for chronic pain in the UK. This may change in the coming years with new drugs, or there may in the future be guidance from the National Institute for Health and Clinical Excellence (NICE) and other organisations that would allow pain specialist doctors to prescribe such medication.

For now, we are advising our members that they should not expect that their doctor in the UK will be able to prescribe a cannabis-based treatment for chronic pain or muscle spasm for hypermobility-related conditions, or any form of chronic widespread pain such as fibromyalgia.

We will support research and guideline development where we are able to; and, monitor the situation and advise our members as this changes.

If you would like to read more about the change in the UK law and the Department of Health and Social Care’s position on this you may find the letters referenced below a helpful start. These letters have been published by the Chief Medical Officer, National Medical Director, and Chief Pharmaceutical Officer of NHS England; and, The Chief Medical Officer for Scotland.

Donna Wicks, Chief Executive Officer, and Dr Philip Bull, Medical Adviser and Trustee, HMSA

Kay Julier, Managing Director, and Dr Hanadi Kazkaz Chief Medical Officer, Ehlers-Danlos Support UK, and

Lara Bloom, International Executive Director, and Dr Alan Hakim, Dir. Of Education, The Ehlers-Danlos Society

 

References

Cannabis-based products for medicinal use. Department of Health and Social Care, Gateway Publications clearance 08539, 31st October 2018

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/753444/

Cannabis-based products for medicinal use. The Scottish Government, 31st October 2018

https://www.sehd.scot.nhs.uk/cmo/CMO(2018)15.pdf

 

 

 

 

Positive Psychology Research Recruitment – Larissa Kalisch

Posted By Donna Wicks, May 23, 2018

 

CALL for participants for my study “Feeling good despite EDS”!

Please note: The study has received ethics approval by the Psychology Departmental Research Ethics Panel (DREP) at Anglia Ruskin University.

Are you…
þ 18 years old or older?
þ Diagnosed with EDS (any type)?
þ Motivated to contribute to research about treatments designed for EDS?
þ Interested in improving your health and well-being?
þ Fluent in English language (no matter the citizenship)?

IF YES, participate in the 5-week online programme based on positive psychology! Positive psychology focuses on how we can become happier and more fulfilled. The programme includes different exercises, writing and reflection tasks about kindness, strengths, hope, gratitude, etc.

Click on the link below:

https://angliaruskin.onlinesurveys.ac.uk/feeling-good-despite-eds-study

If you have any questions, please contact me via email at larissa.kalisch@student.anglia.ac.uk.

Thanks a lot for your support!!

Research participants needed!

Posted By Donna Wicks, May 10, 2018

Please note that this research is looking for brothers or sisters of people who have been diagnosed with HSD or hEDS. The brother or sister must NOT have a diagnosis. This is a fantastic opportunity for us to learn how siblings experience life with a brother or sister with HSD or hEDS. The HMSA has run focus groups for siblings and we know that this research is badly needed. It will help give siblings a voice!

 Department of Psychology,
City University, London

Do you have a sibling with Joint Hypermobility, Hypermobility Spectrum  Disorder or Hypermobile Ehlers-Danlos Syndrome?

Would you like to talk about your experiences?

We are looking for volunteers to take part in a study on
 sibling experiences of Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome (formerly Joint Hypermobility).

You would be asked to: take part in a one-to-one interview on your experiences as a sibling of someone who has these conditions.

Your participation would involve 1 session which would last approximately 60-90 minutes.  Interviews will be conducted in English and you will remain anonymous.

Your time will be greatly appreciated.

For more information about this study, or to take part,
please contact:
Sharina Nathan or Dr. Zoe Boden
Psychology Department
on

0207 815 5814

or
Email: Sharina.Nathan@city.ac.uk

This study has been reviewed by, and received ethics clearance
through the Psychology Research Ethics Committee, City University London [PSYETH (P/L) 17/18 108].

If you would like to complain about any aspect of the study, please contact the Secretary to the University’s Senate Research Ethics Committee on 020 7040 3040 or via email: Anna.Ramberg.1@city.ac.uk

 

Research Brief

Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS), (recently reclassified from Joint Hypermobility and Ehlers-Danlos Syndrome, Hypermobility Type) are conditions which are widely underdiagnosed due to a lack of awareness and knowledge by professionals.

Research is available on the experiences of people with the conditions, but we are not yet aware of the experiences of siblings of people with HSD or hEDS.

This study is interested in sibling experiences of the conditions.  This research aims to increase awareness of the conditions, understand siblings’ experiences and inform professionals from various fields, how they can support siblings, in addition to giving siblings a voice.

The study will involve approximately 60-90 minutes of a one-to-one interview, which will be digitally audio-recorded.  Recordings will only be used for the purpose of analysing data and will be deleted upon submission of the researcher’s thesis.  The study will be undertaken as part of the requirements for the Professional Doctorate in Counselling Psychology at City, University of London.

Giving GPs the Tools campaign – Jenny’s Personal Experience

Posted By Donna Wicks, January 31, 2018

Many people who have a hypermobility related disorders. such as, hypermobility spectrum (previously known as joint hypermobility syndrome or benign joint hypermobility syndrome), have had a mixed experience with their GP or primary care physicians.

It isn’t uncommon for members of the HMSA to tell us that they have been accused of having a mental health problem, rather than a physical condition. It is well known, that mental health is closely linked to physical ill-health. Depression and anxiety, is known to co-exist in people with long term conditions of all types, usually those which cause chronic pain, persistent fatigue or physical disability. So it should be expected that we may, to some degree,  suffer from depression and anxiety, but probably due to our experience of living with what are misunderstood and complex conditions, after all, we are no different from those with other long term conditions.  However, we now know that there may be underlying physical changes to our brains, which may be linked to actually having a hypermobility condition. This is a very simplified explanation and much more research is needed to establish the evidence.

 

Jenny explains the complexities she faced with her own GPs. (Name changed to protect privacy).

 

 

I have been the recipient of both extremely helpful, and less than helpful care via GPS.

A few years ago I moved to a new area, and therefore signed up with a new GP surgery. This coincided with the same time I was diagnosed, and started to really struggle with management of my symptoms.

Initially the GP I saw was helpful, and he was even the doctor who diagnosed me with benign joint hypermobility. I was in out of the GPS a lot, as I had various health problems arise that no one could really sort out.

After doing research myself, I found out about Ehlers-Danlos Syndrome, and all the other issues it can cause, and it soon became clear that everything was linked.

However, this wasn’t the opinion of my GP, who was very much of the opinion that, as I had benign joint hypermobility, nothing was linked and I was made to feel like a hypochondriac. It was even suggested that the pain was due to my mental health. I fully understand that pain and mental health issues can come hand in hand, but I absolutely do not support his thinking in that my pain was ‘just’ my mental health. We fought for a referral to a geneticist, which was eventually begrudgingly made, however I feel it was made very much with ‘ I’ll do it but he will say the same as I’ve diagnosed’ feelings from my doctor.

As it transpired, the geneticist diagnosed Hypermobile Type Ehlers-Danlos, and I finally felt validated. I understood what was going on now, and I believed myself, something my GP had made me doubt.

My GP however, still struggled to take this into account, despite the geneticists diagnoses and consequent report.

It was the advice of genetics that rheumatology be involved. However my GP refused to refer me. He denied multiple times. He was of the opinion that it would add nothing to my care, despite the fact at that time, I didn’t have much care, and rheumatology is supposed to head EDS care. I had major issues getting referrals to anyone else whom I needed to see, and had to practically beg. Again, this made me feel invalidated, like a time waster. I was having to fight every step of the way to get any medical care, it was exhausting and disheartening.

I did finally get a referral to orthopaedics, but my surgeon had to then make further referrals to appropriate care as my GP still refused, and my surgeon agreed it was needed.

 During my care with that GP, I was made to feel like a fraud. I didn’t yet understand EDS myself, and  I simply didn’t have the medical support I should have had. I didn’t know how to manage my condition, and the people that should have been helping me to figure this out, were not. I had to fight for every single referral, and several things were left untreated until I joined my new surgery.

I decided to move from this surgery in the hopes of finding a doctor whom took me more seriously. Luckily, I found the perfect doctor.

My new doctor has listened to every single thing I have had to say. He has gone above and beyond every single time I’ve needed him, and taken time out of his day to check in with me after surgeries. He has not judged me by prior history or notes, something I am grateful for. He is aware of EDS, and this has obviously helped. When I go to my new GP with a query, he answers in depth and gives me as much information as possible. My new GP will literally move heaven and earth to help. I understand my condition a lot more now, I now have the medical support I need. He’s put referrals into appropriate places, he’s given me tips to cope until my referral is accepted. He’s never once doubted me, made me feel like a fraud, or ignored me. Because I can work effectively with my GP, I actually need less GP visits. My condition is now controlled much more effectively because I have the right support and care. A lot of the time, I can now just speak to him via the phone, or leave a task for him with reception, because I know he knows me well enough, and I trust him. Both my experiences were totally contrasting. I can say with certainty that my first GP did not have much knowledge of EDS,  and I feel this effected his way of working. I felt it was very much a case of ‘ I’m unsure what that is, I didn’t diagnose it, therefore it’s not real’.

My current GP has much more knowledge, but this isn’t all that makes him an amazing doctor. He listens, he does not judge, he genuinely cares and wants to help. He’s up for a challenge, and he treats me as a human being. He is proactive, open and supportive. If he doesn’t understand something(which is rare!), he will research it. I am starting to take back control of my life. He is a brilliant GP, I am very thankful.

To enable more of us to have the experience of a great GP who researches what he doesn’t understand please give to the HMSA’s Giving GPs the Tools campaign. You can do so by the following means;

You can donate directly to http://bit.ly/2j3ouc7

Or Just Text HMSA13 to 70070 followed by the amount you wish to donate 5 or 10 (£)

Thank you for your support.

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout

Giving GPs the Tools campaign- Susan’s Personal Experience

Posted By Donna Wicks, January 28, 2018

Susan has kindly submitted her personal experience of visiting GPs whilst having a hypermobility syndrome.  We should point out that many GPs have come to the HMSA’s Kent Model Professional Masterclass, seeking more information and advice on how to best manage, what can be, complex and multi-systemic disorders. GPs have personally paid for training and given up their Saturdays to attend; some of them came to all 3 Masterclasses in Kent.

So whilst there is undoubtedly many GPs who do not recognise or who are not aware of hypermobility related disorders, there are those who are proactive and have insight into the difficulties we all face. The HMSA wants to spread this knowledge to all GPs in the UK and help disseminate the information worldwide. Many of you will relate to Susan’s experience (name has been changed for privacy reasons).

I first noticed signs of hypermobilty when I was 12, my hips would semi dislocate when I walked, it was more of an annoyance than painful at this time. I visited my GP who put it down to my age and advised I would grow out of it. However, I didn’t, I started to get discomfort when walking and sitting. I continued to visit my GP, who would time and time again, tell me I would grow out of it, to take pain killers and to avoid anything that would aggravate them.

Finally in 2010 aged 16, I saw a GP who actually listened to what I had to say. She was unsure what was causing my hips to move, so referred me for x-rays and to a rheumatologist as she was convinced there was an underlying issue. Shortly after I was diagnosed with hypermobility. I seen a physiotherapist a couple of times and was advised that as long as I stay active I shouldn’t get many issues and that was the end of that.

Since then, I have suffered with a lot of back pain and hip pain, at times I can barely walk. When visiting my GPs, they would only focus on my back pain and advise that if I still had hip pain afterwards I should go back again. I felt this was because it was easier for them to diagnose, as they could and would put it down to sitting at my desk all day or pushing myself to hard at the gym etc.

They would also do tests for water and kidney infections, which would come back clear and then prescribe me pain killers (tramadol or codeine) to ease the pain. These would not help at all, the dose would get increased and again not help, so I stopped taking them. I advised I was diagnosed with hypermobility multiple times but the GPs would disregard this instantly, saying if I did have it, they wouldn’t be connected. Making me feel like I was lying and it was all in my head.

I started questioning it myself, thinking maybe the diagnoses was wrong. I would leave feeling deflated and annoyed. I stopped going for a few years after this, as I knew they would not listen to me and I didn’t want to be prescribed more unnecessary pain killers. My employer and family would encourage me to go back but I had the attitude of what is the point, they will not help me and I put up with the pain day in day out.

Eventually in December 2016, I couldn’t cope any longer after the pain became unbearable. I rang my GP surgery and told them my back, hips, wrists and shoulders were in constant pain to the point where I could not sleep. He asked if I knew any reason which could have caused it, to which I advised no but I was diagnosed with hypermobility in 2010. Again he did not believe that I could have been diagnosed with hypermobility because apparently I would have been to young at the time. This comment made me feel belittled and aggravated, as if he looked at my records he would have seen the diagnoses. But due to the fact I am in pain everyday he agreed to send me to a rheumatologist, who diagnosed me with EDS. He appeared annoyed that my GP had referred me again to get diagnosed, questioning me on what I had told them. I am now regularly seeing a physiotherapist which is finally  starting to help.

In reflection the only positive GP experience I have had in the last 12 years, was when I was 16, the doctor was unsure what was wrong but I felt satisfied with the care, referral and treatment I received at the time.

Since then I have not had one positive experience with my GP, every one of them have made me feel that I was wasting their time, that there isn’t actually anything wrong with me, it is all in my head and that I should just take pain killers and rest to ease the pain. I left every appointment wishing I didn’t go in the first place.

I feel that I have spent the last 7 years in preventable pain, purely because the GPs I saw did not have enough (if any) knowledge of the condition.

This is a photo of how my GP experiences makes me feel.. deflated.

You can help the HMSA to spread information to all GPs and primary care physicians in the UK by donating a small amount of funds to the HMSA’s Giving GPs the Tools campaign. You can do so by the following means;

You can donate directly to http://bit.ly/2j3ouc7

Or Just Text HMSA13 to 70070 followed by the amount you wish to donate 5 or 10 (£)

Thank you for your support.

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

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