A WIDOW plagued by orgasms since a botched smear test in 2017 has spoken of her distress after the NHS refused to pay for the cannabis-based suppositories which alleviate her symptoms.
Maria, a 61-year-old from East Dunbartonshire, has been told by NHS Greater Glasgow and Clyde that they are unable to prescribe the medicinal cannabis product because there is not enough evidence to support it.
The hemp suppositories were recommended by Dr David Goldmeier, an NHS consultant and UK expert in persistent genital arousal disorder (PGAD) at St Mary's Hospital in London who the health board referred Maria to for treatment last year.
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She said the effects have been "life-changing" in relieving the excruciating discomfort caused by a trapped pudendal nerve which was damaged during a routine cervical examination at Stobhill Hospital in Glasgow in September 2017.
As well as being effective, the suppositories - which cost just £49 for a pack of 10 - are also much cheaper than the treatments she has been previously offered, including £100 tubes of topical gabapentin and £500 bottles of Ichthammol lotion.
She has also endured "painful and humiliating" nerve block injections in a bid to numb the area, but the effects would often wear off within hours if they worked at all. She has even suffered from disturbing hallucinations - including seeing her GP "melt" in front of her - as a result of side effects from tranquilisers prescribed to calm her.
However, if Maria wants to continue taking the hemp suppositories she will face a £1000 a month bill for the 20 packs she needs.
The mother-of-three said: "Why should I be paying the bill when I didn't cause the problem? This was inflicted on me by the NHS so the NHS should be paying for it.
"It's been recommended by the very specialist they sent me to - that I had to fight to be sent to - and now they're ignoring his advice.
"The condition has calmed down a lot. My own GP says she's never seen me looking better in the past two years than I do now. They're the only thing that's worked. For me, it's amazing not to have feeling down there."
The Herald first revealed Maria's story in July last year when she spoke of how PGAD meant simple activities such as driving over a pothole or using an escalator could trigger embarrassing orgasms.
The condition and the memory of the initial injury have been so debilitating that Dr Goldmeier also recommended a course of eye movement desensitisation and reprocessing (EMDR), a form of psychotherapy more commonly prescribed to alleviate trauma in people who have suffered abuse or served in warzones.
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There is a two-year waiting list on the NHS, however, so Maria is paying for it privately through her health insurance.
The same is not possible for the suppositories, however, as current UK guidelines on medicinal cannabis state that it should only be considered where there is "clear published evidence of benefit".
Currently, that only applies to rare forms of epilepsy in children and young adults, chemotherapy-induced nausea, and muscle spasms in multiple sclerosis.
However, when Maria's case was raised with Jeane Freeman in December by her then-MP, Jo Swinson, the Scottish Health Secretary said that exceptions could be made for so-called unlicensed products on a "named patient basis" where "there is a clinical need which cannot be met by a licensed medicine and where established treatment options have been exhausted".
Maria has now written back to Ms Freeman begging for her help "as a woman" with the health board after her request to be granted the suppositories on this basis was refused.
She wrote: "I have been prescribed an unending list of medication since December 2017, with insufferable side effects. I do not believe that I should be required to tolerate anything producing such side effects when the condition was not of natural cause, but inflicted upon me by the NHS...it is ludicrous that I should be expected to pay for these in order to live a quasi-normal life.
"If the health board will not supply these, then there is a moral obligation for them to fund me in advance in order that I may purchase them myself. At a cost of £49 for ten, and with no cure for this condition, I could require them for 10 or 20 years or however many years I may have left to live."
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In a further twist in the saga, Maria was shocked when she requested copies of her medical records from the health board's legal office in October last year only to be accidentally sent the notes for another female patient from Paisley who had been the victim of a sex attack, including the woman's name, address and a copy of police reports on the assault.
The incident has been reported to the Information Commissioner as a breach of data protection.
Maria has yet to receive copies of the information she asked for about her own case, however.
She said: "Imagine I knew the woman? Imagine if the attacker was named and I knew him? The incompetence is staggering."
A spokesperson for NHS Greater Glasgow and Clyde said: "We understand this is a difficult time for this patient. We are working hard to provide her with the best care possible.
"Prescription of cannabis-based products is subject to considerable regulation. We are currently looking into the patient’s request and will be in touch with her next week once we have explored all options.
"We take the confidentiality of our patients’ health records very seriously. This was an isolated incident where a set of health records of another individual was released in error. Once we became aware of this, we immediately informed the individual and apologised.
"We also reported the breach to the Information Commissioner's Office. We have taken measures to ensure this doesn’t happen again. We have re-trained staff who release health records and added an additional check by senior staff before any records are released."
A Scottish Government spokesman said: “The Health Secretary continues to express her deepest sympathies for the difficulties and extremely distressing symptoms which Maria is experiencing – and she will say again in her reply to Maria’s most recent letter that she absolutely understands Maria’s concerns.
“Ministers cannot make or influence prescribing decisions. The decision on whether to prescribe any medicine for a patient, and which medicine to prescribe, is entirely one for clinicians to make.
"If a clinician on the specialist register were to prescribe an approved cannabis-based product for medicinal use using an NHS prescription, it would be dispensed free of charge in Scotland.”
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