Jenni Meredith - When challenging the system results in medical progress

October 25, 2018

UCan2 contributor Jenni Meredith comments on the changes in regulation concerning cannabis oil, and talks about mental health issues and accessible loos...

Do All Systems Go?

Systems are necessary. Everything we do has some sort of structure. It’s the rigidity built into systems that gets me going. Surely flexibility is optimal? So why are we faced daily with the inflexibility of systems imposed, it would seem, just to make us think more mechanically? Is this what Andy Warhol meant when he famously said he wanted to be a machine? But that was back in the mid ‘70s— an analogue era with no computer algorithms to curtail his creative flow.

Recently, I phoned the audio department of our local hospital to try to book another hearing test, only to be told I need a referral from my GP. An appointment with him takes three weeks, so I rang and asked if I could book an appointment with the practice nurse instead.

“Oh no, you can’t do that. The nurse doesn’t have authority to make a referral unless you’ve seen the doctor.”

“OK, so what will the doctor say at that appointment?” I asked.

“He’ll tell you to make an appointment with the practice nurse, because he doesn’t conduct hearing tests. He’s far too busy,” came the reply.

I have been issued hearing aids for nearly 20 years now. Maybe I’ll have to put up with them a bit longer before winning the fight against the frustratingly rigid systems.

A Fitting Fix

These slow machinations, intended I am sure, to protect us, sometimes cause far more serious side effects than frustration. Take for example the recent events concerning cannabis-based medication for young children with severe forms of epilepsy. The CBD oil was approved at the end of June this year in the US amongst a lot of media hype about a medicine derived from cannabis; an otherwise illegal drug in the UK and in some US states. Parents have challenged governments both sides of the Atlantic about medicinal cannabis treatment for their young children.

Throughout summer we could read of young children who have severe epilepsy, resulting in several seizures every day – every seizure potentially life threatening – and about the case ofone 12-year-old boy whose seizures reduced dramatically when prescribed medicinal cannabis oil whilst living in the Netherlands. The bureaucratic nightmare his mother undertook to get him the same help in the UK, and her determination to succeed, finally prevailed. Her victory means that medical cannabis is soon going to be legal in the UK and should then be available on prescription for certain patients. On the same day that the mother was allowed to keep cannabis oil from Canada for her son – which, this time, was not seized by customs after she got a special licence from the Home Secretary – one little girl in Northern Ireland waiting for her medication licence was rushed to hospital, where medics induced a coma to protect her from the effects of severe seizures.

Yet why all the fuss? It is 12 years since the Home Office licensed Sativex, another cannabis-derived medication, for use in helping some people who have MS. The Home Office specifically stated then that doctors could privately prescribe the herbal medicine “at their own risk” and pharmacists could possess and dispense it to named patients with a prescription.

Then in 2010 the Medicines Healthcare Regulatory products Agency (MHRA) authorised Savitex as an extra treatment for people with MS, and said that doctors could prescribe it for things outside that authorisation – but again “at their own risk”. Since 2013 the medication was separated from cannabis to slightly ease the legal restrictions. A year later the National Institute for Health and Care Excellence (NICE) said did not recommend its prescription, as it is “not a cost-effective treatment”. As a result Sativex is not available from the NHS in England, nor in Scotland. But Welsh people are able to obtain it via their NHS.

Interestingly NICE didn’t find the medication wasn’t effective or had bad side effects. They clearly stated the reason for rejecting it as cost related – an all too familiar story. Yet Sativex is licenced and has, and continues to, help a lot of people with MS related spasms and pain.

Relieving those symptoms is a boon, but reducing life-threatening seizures in young children is another matter.

These families have been through hell to protect their children. But happily now there’s a chink of light, as finally the rigid system has undergone sufficient bends to enable doctors
to not only first do no harm but to proactively do some good when faced with epilepsies where other treatment has proved ineffective.

The Daily Stigma

Most disabilities are stigmatised but epilepsy perhaps more than most. I used to hide my epilepsy, fearing people’s reactions. But when I read about the social model of disability, I realised that anyone daft enough to react badly wasn’t worth worrying about anyway. Another stigmatised disability is mental health. We’ve come a long way from headlines like the infamous ‘Bonkers Bruno Locked Up’ which feels as if it should have dated from the ‘50s or ‘60s, but was in fact published in the Sun only 15 years ago. At least the paper was flooded with complaints. So even if sensationalist reporters were not au fait with the public mood, readers demonstrated that they wanted change.

However change, as always, is proving slow to manifest. We have come a long way but there’s still a long way to go before people feel free to share their concerns in a supportive environment. Why is it we are Jenni Meredith - When challenging the system results in medical progresshappy, even eager, to talk about bone breaks, a serious bout of ’flu or the grizzly details of an op, but feel embarrassed to mention our mental state?

“How are you?”

“Fine.” That‘s the answer we all expect. You can get away with, “Got a cold,” or, “Just recovered from a tummy bug.” But try telling people you’re feeling down when all they wanted was the “Fine. And you?”

They’ll feel uncomfortable. Why? Because of the stigma they’ve internalised about mental health problems. And that stigma is in largely part due to media coverage that focuses on violence; stereotyping and sensationalism that sells but diminishes support seeking.

A long-time friend of mine has periods when she needs to lock herself away and just get the worries of the world off her shoulders. I know this and she knows I know. But we don’t talk about it. My mother’s cousin had a bipolar condition, which we weren’t told about for decades, despite Mum and her cousin being very close. My parents never talked about my epilepsy. They preferred to pretend it didn’t exist.

The WHO estimates that globally 50million people are diagnosed with epilepsy and that mental health issues affect a quarter of the global population. We are not alone. And we still need to work on improving the perception of these conditions so that those who find themselves or their loved ones affected, are not afraid to seek the help they need.

Changing Places

Meanwhile, with physical barriers to the built environment there have been plenty of improvements too. But we still need more changes. One problem is that the average male planner doesn’t plan things with the average female in mind – tiny toilet cubicles, for example. It’s OK for a man to squeeze into those spaces, because they are not usually the ones carrying a handbag and shopping bags, or accompanying small children. But once we have found a way in when the door almost touches the pan, where do we put everything? All that is gradually changing, as some of the best engineers, architects and designers are now women.

One campaign that is making a huge difference to disabled people’s dignity and freedom of movement is Changing Places. The Changing Places consortium which manages this initiative, the need for which was first brought to public attention by PAMIS, the learning disability organisation, provides an excellent guide to explain what facilities are required and where these CP toilet/washrooms should
be located. Their advice insists that consultation is key and they suggest open facilities are often better, but acknowledge that a key scheme is often necessary, depending on the location of the facility.

There are 41 CP facilities in Essex, which sounds a lot, but Essex is a geographically large and populous county. The campaign estimates that 23,000 people need these facilities. So the process of persuading venues and councils to invest continues. These Changing Places toilet and changing facilities are offering such great home-from-home comfort, you wouldn’t be surprised to find the odd squatter in there. Perhaps that’s the reason some Changing Places are locked and only accessible with a RADAR Key?

• Find Jenni – who also writes health- related poetry – at wordsart.co.uk.

 

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