Christine Jardine: Government should pay for medicinal cannabis prescriptions for children with Epilepsy

Surely any person, when the quality of life for a child is on the line, would quickly come to the conclusion that paying up is the right thing to do?

Ever since she was elected as MP for Edinburgh West, Christine Jardine has been pushing the Government to give access to medicinal cannabis particularly to children who suffer from rare forms of Epilepsy for whom it can make a huge difference.

She has seen at first hand how it can transform the lives of the children who take it. In her Scotsman column this week, she talks about Murray Gray, her young constituent, now thriving and living his best life. But a couple of years ago, the story was very different:

When his mum Karen first came to me, he was a very unwell little boy who was, as I explained, constantly in and out of hospital with dozens of seizures, and his family were worried they could lose him.

Now, since being prescribed cannabis oil, he is seizure free and a happy youngster who plays football with his dad and told me everything I needed to know about dinosaurs when he visited my office. This medication has given him a life he otherwise may not have had.

The problem is that although it is possible for children to be prescribed medicinal cannabis, the NHS is only paying for three of them. This means that parents like Karen Gray are having to pay £1500 per month to ensure that their children can get the medicine that is giving them such a good quality of life.

Late last night, Christine led the first adjournment debate of the new parliamentary term in which she and others pushed minister Jo Churchill to ensure that in the short term, at least, the Government should pay for the children’s prescriptions until more clinicians are wiling to prescribe it. She outlined the problem:

When the then Home Secretary agreed that medicinal cannabis would be legal for use in the United Kingdom, I think we all believed that parents would no longer be forced to watch their children suffer, knowing that a treatment was available. What has happened since is heartbreaking. In the intervening years, they have been forced to source medication themselves, sometimes travel abroad—again at huge cost—to collect it, challenge the medical authorities and face rejection and repeated appeals for NHS prescriptions.

Surely no one in this place wants even to contemplate what it would mean to have a loved one—husband, wife, partner, brother, sister, friend or child—who had to pay for the medication they needed simply to go on with day-to-day life. Think of the diabetic without insulin or the asthmatic without an inhaler; this is no different, but it is new. With so much red tape and inflexible guidelines, too many people face being left alone, helpless and simply unable to afford life-changing treatment. In fact, since November 2018, just three NHS prescriptions have been issued for the type of medicinal cannabis that is life-transforming for these children.

Clearly, guidelines are not empowering medical professionals to do the job they want to do and provide the best possible care for their patients, knowing that they have the establishment’s support. Critics often point to the National Institute for Health and Care Excellence and say it has restricted medicinal cannabis, but only a few months ago it said that there was no ban and that prescriptions should be done on a case-by-case basis.

Still parents are told that the medical profession does not have the confidence to prescribe the medication because of a lack of evidence and that clinical randomised control trials are needed. However, that will not work, because this medication does not come in a standard dosage and the balance of ingredients needs to be Toggle showing location ofColumn 104changed to suit individual patients. Even if medical trials did work, they would be of no use to those children who are already benefiting from medicinal cannabis. Trials would be both unethical and unsafe, because those children would have to stop taking the medicine that is working for them, perhaps for a placebo, and risk a return of life-threatening seizures.

These debates at the end of business are usually half an hour in which an MP can get a minister to come and discuss a subject of interest to them or their constituency.

They are often really good examples of the cross-party working that characterises Westminster life. Most people’s experience of watching Parliament is the bear pit of Prime Minister’s Questions. It would be much better if the public could see politicians working together on big issues. Last night Labour, Conservative, SNP and even DUP MPs supported Christine. You can read the whole debate here.

It was longer than usual. They are timed to last till 10:30 pm on a Monday or for 30 minutes, whichever is the later. This one started just after 8 and went on till after 10. MPs made impassioned please to a Minister who gave all the impression of understanding the problem but who couldn’t quite get to the solution.

There is no denying that it is a complex issue involving the medical establishment, NHS and licensing bodies, but in the absence of agreement to prescribe, the very least the government could do is to help the families whose children are already benefitting so greatly from this medicine. I hope that she is reflecting on the strength of the arguments that were made last night and will soon come up with the money.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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4 Comments

  • Helen Dudden 7th Sep '21 - 4:52pm

    It’s also a good medication for those with dementia and other aging illness.
    I find it useful for pain relief, as I have a problem using opiates.
    The THC is being tried in certain mental health conditions.
    The only complaints against this, may be the drug companies.

  • I think we need to use some caution about what is posted re the medical benefits of the Cannibals plant genus NICE exists for a reason, to ensure licensed medicines are effective and that the benefits of prescribing outweigh the any risks and all drugs have side effects some common, some rare, some severe, some less so.
    There is clearly evidence to suggest Cannibis, or purified extracts from Cannabis may be effective in a mber of conditions, pain relief, as an anti emetic, to manage some rare and severe cases of epilepsy and NICE has made it absolutely clear that doctors can use their judgement in prescribing on a case by case basis.
    The Alzheimer’s society clearly states on its website -:
    alzheimers.org.uk
    That there is currently no evidence to show that Cannabis or Cannabis oil can stop, reverse or prevent dementia.
    It does accept that in some studies show that Cannabis could help some of the behavioural symptoms of Alzheimer’s and states that there have been some interesting lab experiments looking at the effect of Cannabis extracts on brain tissue and in mice, however these results have not been replicated in human trials.
    So yes, research should continue and yes, where the evidence base exists prescribing should be, and is legal, but beware snake oil merchants.

  • Justin, it’s right we should beware snake oil salesmen, but the challenge with cannabis treatments is that there has been massive resistance to conducting the kind of trials that are required. That resistance isn’t just bad for medical progress, it allows the snake oil salesmen to flourish. Those with, or close to someone with Alzheimers will be particularly desperate and vulnerable to giving something, anything, a go.

    Nevertheless, it seems that cannabis related treatments are expected to jump through higher and smaller hoops to become available to those who need them than many traditional pharmaceuticals, including many which have significant side effects.

    A key point Christine makes is that when there are patients who are successfully using cannabis-based medicine after years of drugs which are well known to have side effects, then it would not be ethical to switch them to a trial. However, there are other patients stuck on their old medication who could be entered onto trials. Not only was Murray’s old medication ineffective, it was more damaging to his body.

    I’m a very big fan of proper medical research, and recommend everyone reads Ben Goldacre’s Bad Science and Bad Pharma. Too often the ‘alternative’ medical industry makes excuses for not doing research, but when it comes to cannabis related medicines, they are often prevented from doing what’s required.

    It’s worth noting that it’s not that uncommon for funding to be made available for ‘experimental’ drugs, especially for those with rare conditions. Many of these cost far more than the drugs Murray needs.

    IMO it’s fair, for the time being, to allow only specialists to issue prescriptions for medical cannabis, as it would be too big a burden for GPs. But that requires the availability of specialists and guidelines for referral to be published.

  • @Fiona, I understand desperation, not for family members with dementia, or epilepsy but for.those with terminal cancer.
    I watched my parents suffer as my older brother died at the age of 14 years-old so I have seen desperation up close.,They would have given anything , done anything but the truth is despite numerous adverts for unlicensed miracle treatments there was nothing that could prevent his death.
    Where I do agree with you is if there is a treatment available that has an evidence base to show its efficacy then the government should pull out all the stops to fund it, if only on a case by case basis, which in the case of Cannabis prescribing it has done. It is not the government, the law or NICE that is preventing wider prescribing of Cannabis.
    If we move to a place where everyone can just start buying medication and then expect the G.P. to pick up the prescribing then the house will fall. Cannabis and for that matter Diamorphine can be prescribed if a patients doctor believes it is in the best interest of the patient. It is rare for a reason I don’t expect family members, often, as you say desperate, to allways agree. and on occasion they may be right, but usually it is desperation trumping reality.
    Sadly parental, or little brother desperation rarely adds anything of real value to a clinical decision, sad though that is.

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