tbh, fundraising like this is borrowing the halo of parents who are legitimately fundraising for treatment for children. E.g., Prof David Nutt frequently discusses the plight of well-informed parents who moved abroad to obtain medical cannabis based treatments that are effective for their children who live with treatment-resistant epilepsy. The drugs have transformed their lives for some of them.
Association (BPNA) to recommend NHS prescription of medical cannabis to children with severe treatment-refractory epilepsy, in whom it has shown unprecedented efficacy and allowed many children to stop taking multiple ineffective epilepsy drugs. The first case series of 10 patients has been replicated in a further 10 patients and published in BMJ Paediatrics Open. A bayesian analysis of the treatment efficacy of medical cannabis in these 20 patients predicts that any future patient has over a 90% chance of a good response (L Phillips, personal communication, 2021).
The BPNA’s reason for refusal is that there is “no evidence of efficacy,” despite each of these 20 patients having shown a response, sometimes a 100 times reduction in seizure frequency. In many of these children, the medical cannabis worked despite Epidyolex, the only authorised cannabinoid medicine for epilepsy, having failed. In contrast to the BPNA guidance stating that prescribing medical cannabis is probably not in the best interests of children, the above case study series clearly and consistently shows that, for these children, medical cannabis treatment is in their best interests.
www.drugscience.org.uk/why-doctors-have-a-moral-imperative-to-prescribe-and-support-medical-cannabis-an-essay-by-david-nutt/
www.drugscience.org.uk/medical-cannabis-for-severe-treatment-resistant-epilepsy-in-children-a-case-series-of-10-patients/
But, even now, although they can obtain a prescription from the NHS, the parents have to pay private prices for it which works out at >£1000 per month. These are the sort of parents who end up fundraising for genuine medical treatments.
And this ends up giving cover to dubious drugs bought off the internet for people who are self-treating. And, I gather, this is the advice that is given in support groups in an attempt to coerce GPs into prescribing the drugs on the NHS as the least worst option. (These are available for these purposes so would be supplied on prescription.)