MS cannabis spray not available from NHS in England – and recognising EDS as a chronic painful illness

satifex use

A word of explanation about the cannabis spray that was the cause of the unfortunate script in ITV’s Coronation Street last Friday.

The spray goes by the name of Sativex and is licensed for use in the UK to treat muscle spasms and stiffness in people with MS. It is important to note that it is not, yet, licensed for the treatment of any other condition.

Furthermore, despite the license, the National Institute for Health and Care Excellence (NICE) decided that the spray was not cost effective and that its costs outweighed its advantages. Therefore, Sativex is not available on the National Health Service in England, Scotland or Northern Ireland – not even for people with MS. And, as Coronation Street is set in the English city of Manchester, it would not be available there even if Izzy did have MS instead of Ehlers-Danlos Syndrome (EDS).

In Wales, it is technically available because the recommendation of the All Wales Medical Strategy Group (AWMSG) to approve access to the treatment has been ratified at ministerial level in the Welsh Government. However, many Welsh people with MS are reporting difficulties in getting the treatment. “Having MS is not a golden pass,” one such person commented.

While Sativex is currently approved solely for the treatment of MS-related muscle spasticity, the drug is also being trialled for a number of other conditions. Besides cancer pain trials in the US, Sativex is being studied in the UK as an add-on treatment for brain cancer. Previous studies have also suggested benefits in treating arthritis and neuropathic pain.

My brief description of EDS Hypermobility type in the last blog caused some upset among people with EDS. For that, I am sorry. I did not intend to diminish the illness but did over simplify it; double-jointedness is involved but at the least serious end of the spectrum.

So, I’ll now try to put the situation right. EDS is a group of inherited connective tissue disorders, caused by various defects in the synthesis of collagen. It is known to affect men and women of all racial and ethnic backgrounds.

There are six distinct types of the illness currently identified. All share joint laxity, soft skin, easy bruising, and some systemic manifestations. Each type is thought to involve a unique defect in connective tissue, although not all of the genes responsible for causing EDS have been found. These types are: Hypermobility; Classical; Vascular; Kyphoscoliosis; Arthrochalasia and Dermatosparaxis.

Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees) and small (fingers, toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate frequently. The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.

Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.

15 thoughts on “MS cannabis spray not available from NHS in England – and recognising EDS as a chronic painful illness

  1. The thing is vascular type eds is deadly. So describing it as double jointedness did upset me. I’m pleased you tried to put this right and looked into a little more what eds really is. I appreciate your efforts. If you look at the EDS SOCIETY Web site http://www.ehlers-danlos.org there is a whole wealth of information. Let’s spread the awareness of all hidden disabilities. xx

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  2. “My brief description of EDS Hyperactive type…”

    You are trying to reduce offence caused, but you can’t even get the name of the condition right.

    Oh dear. Not going too well.

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  3. I have seen a great deal of backlash about Cherylee Houstons script as Izzy Armstrong last week. The comments were about wishing she had MS. I am writing to say I don’t think Corrie has anything to apologise for. Those that think the comments were out of order do not understand anything about EDS beyond the fact we are “double jointed” and suffer pain.

    I have EDS, and am mostly bedbound by the neuro issues of having a hypermobile neck as well as fatigue so bad I can only cope with a carer changing my clothes for me, bathing me or brushing my hair for me on average once every 10-14 days, I can manage to walk about 6 steps, fully supported by 2 carers and with Oramorph, fentanyl patches, dihydrocodiene, amitriptaline and another 12 meds for the gastro, bowel, bladder, neuro, anxiety and mental health and mood complications.

    EDS is often misdiagnosed as many things including MS, and MS is also one of the prevelence of other overlapping or comorbid conditions us EDSers are more likely to suffer than the general population. I for one have EDS and Severe ME, POTS, Cervical instability, premature menopause, TMJ, dyspraxia, sensory processing disorder with seizures, poor bladder and bowel control etc I have over 25 diagnosies and final borderline personality disorder and PTSD from 25 years of mistreatement and misdiagnosis since being being made disabled by it age 7 til diagnosis age 31.

    Now I finally have a diagnosis I have to travel to 6 different hospitals throughout England, by ambulance flat on a stretcher due to my condition. All this after I had to give up a life I just managed to just cope with in Scotland, that upon diagnosis I was told there was no speciality in Scotland to help manage EDS. The journey alone caused irreversible issues.

    Yeah I would have to agree with the words given Izzy. I have wished I’d have had cancer instead becaus one way or another it would be over by now, and I’d wish I had MS as they have the possibility of good pain relief without breaking the law, a sell as far superior research for their condition. So I will never apologise for my words, and I don’t see why Corrie should either.

    I have to pay a lot of my disability money to cover my own powerchair as I can weightbear so can’t have a powered wheelchair and can’t use a manual chair as my shoulders dislocate just wiping my bottom or turning in my sleep so I’ll never be able to self propel.

    I also pay stupid amounts to have CBD imported for my pain as the fentanyl etc isn’t enough to get me comfortable enough to function at any level, and I pray for the day we too are allowed medical marijuana.

    I have written to you about my “life” (and I use the term loosely, though I am thankful that Im not as unwell as some of my affected friends and family)as I back this storyline 100%

    Kind Regards
    Emma Fowler, Coventry

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    • Hi Emma, thank you for your comment and for the insight into your life with this illness. It is truly distressing just to read about, let alone be forced to live with it. In the same way, there are people with much more serious and advanced MS than I have – and they are an inspiration, just like you. Had the scripted comment by Izzy been based on fact, which it wasn’t, it may have been forgivable in the eyes of many who criticised it. However, the spray she wanted is not available from the NHS to anyone in England. It is only available to people with MS who live in Wales – and, even then, getting it is difficult.

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  4. Whilst the update is appreciated I still don’t think you have really portrayed how multi systemic and disabling EDS can be. I have EDS type 3 as well as joint pain/dislocations, I have bowel problems, bladder in continence and autonomic failure caused by the lack of connective tissue and chronic fatigue from living in a body not fit for purpose. I have friends who are PEG fed due to gasroparesis, friends who have had to have risky neck surgery due to chiari malformation.
    Whilst I don’t agree with the line used in Coronation Street at all, your blog has highlighted the lack of awareness and understanding that people who have EDS face.
    The MS Society (amongst others) has done a brilliant job at bringing awareness to MS so whilst people may not know the complete ins and outs of having MS the majority of people will accept if you say ‘I have MS’ it means ‘I have a serious and disabling condition.’ For people with EDS the lack of awareness can mean people take that as ‘I’m bendy’ which for someone who lives with such disabling conditions everyday can make the already difficult struggle almost unbearable.

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    • I agree that there is a lack of public awareness about EDS – an illness about which I had no knowledge until last week. So, although the scripted comment was somewhat insensitive and was factually incorrect, as the spray isn’t available from the NHS to anyone in England, it has led to awareness of EDS being raised a little.

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  5. This ignorance regarding EDS just keeps on getting better!!! What on earth is ‘EDS Hyperactive type’???? I myself have type 7a and have NEVER heard of Hyperactive type!!!! Don’t talk about what you clearly know NOTHING about!

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    • To be fair Sara I think this was a genuine typo. From my perspective I want people talking about EDS (especially if it’s something they know little about) we can only raise awareness by having conversations.

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  6. Well Corrie has helped to raise some EDS awareness in a round about way!

    I think we’re all missing the point here…..Coronation Street is a soap. I think a lot of people who haven’t researched the NICE guidelines about MS patients having cannabis on prescription just presume MS patients can have it. In my local hospital there are MS leaflets on display about cannabis. The character “Izzie” in question…..if she is to represent some of the EDS population ….in her severe pain, having just come out from seeing her GP with no pain relief or help…would be at her wits end and desperate. A patient in that state…..having a conversation with her ex…..would not think to go on Google to check the guidelines before she spoke.

    I’m sure we’ve all said things before getting our facts straight at some point in our lives?!

    Izzie was portraying a small portion of what it’s like and how it feels to be an EDS sufferer. It wasn’t aimed as a dig at MS patients but highlighting that not enough is done to help EDS patients.

    I don’t think Corrie have anything to apologise about.

    I’d actually like them to film Izzie going to lots of hospital appointments for every organ system of the body!

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    • Generally I’d take what they come up with as reasonable *because* Cherylee does know what living with EDS is like, as she has it herself – I’ve seen her out & about in her powerchair since I live in Manchester too.

      I will admit it, I have said that sometimes I feel as though I’d rather have cancer than EDS. I’ve lost far too many friends and family members to various cancers … but at least with cancer, there is a chance of either getting better, or death ending one’s pain (though I know that is rather an extreme way to look at it). With hypermobility EDS as severe as mine – 80+ dislocations every day, dysautonomia, secondary fibromyalgia & so many linked organ problems – I will be suffering all my life, and it’s likely to be a reasonably normal-length lifetime. That’s not the most hopeful outlook, you know?

      I’m already only able to go outside my apartment building in an electric wheelchair with power tilt, and that’s been the case since I was 25 (I’m now 31). The amount of abuse I get from total strangers on a regular basis just for trying to get around using my chair and public transport is disgusting & makes my anxiety ten times worse – and I can’t see that improving any time soon, because frankly, people suck and this government don’t give half a damn about anyone who isn’t a millionaire. I’ve been physically assaulted 4 times, mugged once, burgled twice, all by people who either could see I was disabled or knew it anyway and didn’t care. It gets very tiring…

      I can understand why it might have upset MS patients to hear such a statement, but… as others have said here, at least MS gets taken seriously. EDS almost never does. There are still, in 2017, less than 10 specialist doctors treating EDS in Britain, they’re not even all on the NHS, and there are no specialist EDS clinics in Scotland or Wales to the best of my knowledge (there used to be one at Glasgow Royal, but it appears to have been removed from the registers).

      How many MS specialist clinics are there? I bet there’s a lot more research going on into the variants of that condition than into those of EDS, based on the clinical studies I’ve seen & heard about. *sighs* It’s not a one-up contest or anything, but really, if you think about it I am sure you can empathise with our situation(s) at least a bit, as we do with yours.

      What I wouldn’t do to swap EDS for a condition with a defined beginning, treatment and cure or end, where it didn’t take 20 years of abuse from GPs & arguing with consultants & having to move district entirely to get an accurate diagnosis!

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