I LIVE WITH extreme pain. I have a rare neuromuscular disease that comprises parkinsonism, muscle myopathy, dystonia and a concomitant severe osteoarthritis of my spine, hips and knees.

I have been using Versatis patches for well over two years. I found Versatis patches took the edge off my pain. It wasn’t revolutionary, it just made things bearable.

In January, my GP prescribed them for me as usual but when I went into the chemist with the prescription a couple of weeks ago, the chemist told me, “These are no longer approved for medical card holders”.

I’ve since learned that GPs can now only prescribe the patches on a medical card for people using it for post shingles pain.

I was told by the pharmacist that the only way I could get the patches was with a private prescription for post shingles pain and it would cost me €160 for one box.

However, I don’t have post shingles pain. I used the patches to treat the pain from my osteoarthritis. I used to put them on my knees and left hip where I have degeneration of tendons, called tendinopathy.

My right hip and left knee have completely degenerated but surgeons are reluctant to operate for replacements because of my rare disease. So I’m left with excruciating pain where I rarely get a good night’s sleep.

‘I’m still in agony’

Last week the HSE Director General Tony O’Brien told the Oireachtas Committee that there was no directive to doctors to withdraw Versatis pain patches from medical card holders.

This week he retweeted a tweet about Versatis not being recommended in the NHS due to a lack of robust evidence of clinical effectiveness.

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I think Tony O’Brien is trying to cut costs, he’s not looking at the experience of patients.

One always has to be suspicious when ‘cost-cutting’ is the real cause of withdrawal – not that the product doesn’t work. It does and a great many patients find it does.

As for Versatis only working for one type of medical condition … that was found for aspirin, which is now used for strokes.

Thalidimide was first used for morning sickness (with disastrous consequences) but is now used in cancer treatment. Drugs said to be only for one purpose have been found to be effective for many conditions and for multi-condition use.

When the HSE listen to patients they’ll find we contradict so-called ‘research’.

‘Enduring, constant pain’

I’ve asked my GP for a Volterol gel prescription, a pain gel to have instead of Versatis. The chemist said there was great difficulty sourcing supplies of Volterol, so offered me Diffene gel instead.

Diffene gel is a far smaller tube – about a third of the size of Volterol, so I’d have to get more frequent prescriptions and thus spend more money in prescription charges.

I believe the Versatis is better. I used it alongside morphine and panadol – a multi-analgesic approach – but I’m still in agony a lot of the time.

It’s time pain was taken seriously by the health services in Ireland.

It is simply torture to leave medical card holders in agony. It must constitute a human rights violation.

I live in enduring, constant severe pain and I get virtually no care for it. My life is a misery.

I personally believe we pain-patients know best. I’m sick of the medical ‘power and control’ that give us little choice and expect us to suffer.

Margaret Kennedy is a disability activist and campaigner on rights for disabled people in Ireland. She (and her identical twin sister Ann) have a rare neuro-muscular degenerative disease. Margaret is a wheelchair user and moderates the facebook forum ‘Wheelchair Rights Ireland’.