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.