Wales Online reports
Three years ago the oral spray Sativex was made available in Wales following approval from the All Wales Medical Strategy Group (AWMSG).
It meant Wales became the first country in the UK to offer a cannabis-based drug for sufferers of the progressive condition.
Sativex helps treat Welsh MS patients experiencing symptoms of muscle spasms and stiffness.
But experts claim there is a “postcode lottery” in Wales when it comes to accessing the medication.
Consultant neurologist Dr Andrea Lowman and MS specialist physiotherapist Rhian O’Halloran, both of Cardiff and Vale University Health Board, say Sativex availability remains “patchy” following its approval for use in 2014.
In a joint statement they said: “While the All Wales Medicines Strategy Group decided that Sativex should be available to Welsh patients despite it not being approved by NICE, implementing a service to deliver this medication has proved complex.
“New drugs are not automatically approved by local health boards.
“In order for Sativex to be available, I had to request this via my clinical board.
“This requires the filling in of a request form which requires a lot of data that we simply do not have readily to hand and took some time to collate.
“While we planned to provide Sativex through the existing spasticity and MS clinic service at Rookwood Hospital in Cardiff, this was complicated by both clinics by being full beyond capacity, and no means of increasing this within available resources.
“This meant that we did not have available appointments to see patients who may benefit from Sativex very quickly.”
At a meeting with Assembly Members held last week, the experts spoke of the challenges in delivering an increasing number of available treatments to people with MS.
There are currently 12 disease-modifying therapies (DMTs) for MS, each with different support and safety monitoring requirements.
As the numbers of patients with relapsing MS on treatment grow, specialists are increasingly concerned that timely follow-up is becoming more difficult.
They claim there is not enough time during clinic appointments to assess patients effectively or to discuss treatment options.
Furthermore, as a result of added pressures on MS neurologist and specialist nurse case loads, people living with progressive forms of MS, for whom disease modifying treatments are currently unavailable, are pushed further down waiting lists and receive limited support.
Lynne Hughes, director of MS Cymru, added: “It is not only access to Sativex which has experienced delays in being prescribed to people living with MS.
“We know of one local health board which has a waiting list for Tysabri (a common intravenous treatment for highly-active MS) because they are unable to manage the ongoing monitoring and follow up needed.
“Another health board is developing business case to manage infusion clinics but still has an issue with ‘follow up’.”
Professor Neil Robertson, an MS specialist working at the University Hospital of Wales in Cardiff, said Sativex is just a “small taste” of the problems which will come in the next year or two when newer treatments becoming available for progressive forms of MS.
He said: “Although we have an obligation to supply NICE-licensed drugs within a defined timeframe, we consistently fail this three-month target and it is more commonly 12 to 24 months before approved drugs are delivered to patients in Wales.
“However, drugs on the horizon are likely to dwarf recent experience with Sativex.
“For example new drugs for progressive MS may be suitable for up to 50% of patients with MS who have a progressive form of disease and who currently receive no disease modifying therapies.
“Delivering effective treatments to this local patient group who may number more than 1,000 individuals will require a step change in infrastructure.
“We struggle with simple things: for instance there are only two outpatient clinics that are available and suitable for patients with neurological disease to be seen and it has been difficult to identify additional clinic capacity.
“In addition most new treatments require complex safety monitoring including MRI scans.
“However, capacity to provide the annual scans required for all patients is limited, and although high-quality scans are available locally these are currently used solely for research purposes.”