Fighting … Maureen and her husband Philip, who has multiple sclerosis (Photo: OLIVIA MASSIE)

Maureen Kirchin has contacted the NHS East and North Hertfordshire on behalf of her husband Philip, 68, who has primary progressive multiple sclerosis.

She said: “Anyone with MS should be able to access medicine to help them.

“It is totally unacceptable that Sativex is not funded in our region, so I took action and contacted our clinical commissioning group.”

Cannabis-based mouth spray is only approved for people with moderate to severe spasticity for whom other treatments have not worked.

But half of UK sponsoring groups do not systematically fund the drug, meaning thousands of patients are absent based solely on where they live.

The MS Society partnered with the Daily Express last month to campaign for equitable access to treatment.

The charity has launched a tool on its website that allows people to check if their clinical commissioning group is funding Sativex and send an email calling for a change if they aren’t.

And more than 2,000 have joined the fight. Nick Moberly, Executive Director of MS Society, said: “This is an important milestone in our campaign to end the Sativex Postal Code Lottery.

“We would like to thank everyone who took action, as well as the Daily Express for their incredible continued support.”

MS Society research found that only 49 of England’s 106 GCCs funded Sativex.

Anyone not providing the drug has now received at least one email from a local campaign supporter. Norfolk and Waveney, Berkshire West and West Sussex received the most contacts, with more than 90 each.

Expressing the agony that people with MS can feel, Maureen described her husband’s heartbreaking condition.

She said: “Philip’s mobility is very limited. He has to be hoisted up, he is right handed but has lost the use of that hand, there is only a tiny bit of feeling left in his left hand. His MS is affecting him. also his hearing, sight, speech and cognition.

“On top of all this he has terrible spasms that keep him awake. It is soul destroying for him and it breaks my heart. I read the story of someone who received Sativex and it changed his life – Philip deserves the opportunity. “

Maureen said if Philip could have a day without spasms and sleep better, it would make life more bearable.

She added: “He has tried so many other treatments, but nothing is working.”

Earlier this month, NHS England wrote to all GCCs reminding them of the 2019 guidelines recommending Sativex in cases like Philip’s.

But activists said there is still a long way to go to ensure equitable access.

Mr Moberly added: “While it is encouraging to see so much pressure on the CCGs in England, it is essential that we do not lose momentum until all Sativex-eligible people with MS have gone through the process. no access. “

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My long, slow, torturous attempt to receive drugs

Before trying Sativex, David Beale could only get two hours of sleep a night.

The drug was a “wonderful success” for the 70-year-old man, who has lived with MS for 20 years.

For the first time in years, he was able to sleep for seven hours.

But since Sativex is unfunded in his area, he has urged his NHS North East Essex clinical commissioning group to provide it – and faces an agonizing wait. David, who has secondary progressive multiple sclerosis, which means his condition is getting worse, said: “I am totally exasperated by the long, slow and torturous process of accessing a drug.”

My neurologist made an amazing funding request, but I still don’t know if it was approved.

“My treatment options are limited. I have tried every drug available and the Sativex is the only thing that has really helped me.

“I support the MS Society’s campaign because I want to do whatever I can to help make it more widely available. “

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COMMENT FROM JOELA MATHEWS

I have seen the significant impact that Sativex can have on a patient’s quality of life.

It can help people continue to lead full, independent lives and enable them to undertake daily tasks such as shopping or looking after their children. It is sad to see patients being denied this due to a postal code lottery.

I have worked with patients who have told me that they do not want to quit their jobs or move out because they feared losing access to Sativex.

Some people want to be closer to their families as their care needs increase, but the Sativex zip code lottery can make that impossible. It is unfair.

Three things need to change. First, Sativex must be included in drug formularies – the drug list is a clinical commissioning

The group is ready to finance. Second, the responsibility for prescribing will be shared between GPs and specialists, freeing up specialist time and reducing costs for the NHS.

Finally, improve spasticity services as a whole so that people can benefit from other services, such as physiotherapy, to help them with their spasms, before being prescribed treatment.

  • Joela Mathews is a neuropharmacist

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This notice was published: 2021-10-04 18:23:44

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