An Edinburgh household is demanding solutions after they are saying they’ve waited three years for a promise made to them by the then secretary of state for well being and social care, Matt Hancock.

On March 19 2019, a number of households from throughout the UK ventured to Westminster as a way to put strain on the UK authorities to prescribe THC hashish medicines to their epileptic kids by way of the NHS.

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Karen Grey, from East Craigs, was in attendance on the assembly as mom to Murray, 9, who suffers from a uncommon epileptic situation referred to as Doose Syndrome.

His uncommon situation had left him in a continuing state of standing in hospital, having a number of seizures a day which threatened his life, earlier than he accessed hashish medicines Bedica and Bedrolite that his mom had smuggled throughout the border from the Netherlands.

Entry to the medication is now accessible by way of a personal prescription in Scotland at a clinic in Stirling – however this prices Murray’s household round £1,400 a month – one thing they declare Hancock promised would change.

Caring Karen and her son are a part of the Finish Our Ache marketing campaign group that has been vocal on the matter for years and infrequently organises occasions in Parliament, just like the one talked about above, to attempt to persuade MPs to assist their trigger for THC hashish drugs prescriptions to be made accessible without cost on the NHS.

On the aforementioned March assembly, Finish Our Ache invited Matt Hancock to listen to tales from households who’ve been struggling to make ends meet with the price of the drugs, while additionally attempting to maintain their kids alive.

Throughout the video, Hancock could be heard giving assurances to the mother and father that the medication could be accessible on the NHS with out cost within the coming months however accepted that months are not any good for a few of these households.

He stated that he “understands how necessary it’s” that oldsters can achieve entry to THC hashish medicines corresponding to Bedrolite and Bedica which might be used to deal with uncommon types of epilepsy by way of prescriptions on the NHS.

Hancock provides that the medicine have been going by way of the related exams however stated that the choice should be primarily based on a scientific resolution – one thing the British Paediatric Nurses Affiliation (BPNA) has but to supply.

There may be additionally an acceptance that the households with kids whose lives have been improved by the medicine ought to act as an affordable trial to grasp the effectiveness of the medication.

However Karen says that she feels let down by the promise made a number of years in the past, and though she is hopeful that the present Well being and Social care secretary, Sajid Javid, will push the problem alongside, she says that she is not going to be holding her breath after a number of failed guarantees got here to go.

She stated: “Hancock made the promise to us in London on March 19 2019 that our kids would be capable of entry their life saving remedy. However we are actually into 2022 and we’re nonetheless having to fork out round £1,400 to fulfill Murray’s prices.

“I had just lately met with Christine Jardine, my native MP, who assured me that Sajid Javid was hopeful of discovering an answer within the coming months.

“However the actuality is that the federal government continues to quote the BPNA who’ve little to no understanding of what medicinal hashish can obtain. They require coaching to grasp the advantages of the therapy and in order that our kids could be correctly medicated.

“We have been promised observational trials as our kids’s personal lived expertise and years of therapy was deemed inadequate proof that THC hashish medicines work. However now we have not heard something.

“We have been additionally informed that inside seven months we’d have entry to the prescriptions by way of the NHS however we’re nonetheless having to go and have our prescriptions stuffed out privately.

“The price of preserving Murray in hospital, earlier than the Bedica and Bedrolite drugs, was round £100,000. The fee for his remedy by way of the NHS could be round £16,000. It doesn’t make sense – it saves the taxpayer cash.

“I hope the UK authorities can see the explanation and prescribe this life saving remedy.”

Hancock is not within the position after a leaked video appeared to indicate Hancock groping and kissing a colleague within the midst of the pandemic however households really feel as if the Conservative authorities ought to nonetheless honour their guarantees.

It’s understood that the UK authorities believes that extra proof is required to routinely prescribe and fund different at the moment unlicensed therapies on the NHS and that they proceed to again additional analysis and take a look at the way to minimise the prices of those medicines.

In addition they imagine that almost all of THC/CBD merchandise are unlicensed and haven’t demonstrated clear proof of their security, scientific and value effectiveness.

That is regardless of a number of years of profitable therapy of tens of youngsters within the UK – together with Murray.

The therapy was additionally backed by Murray’s former paediatric neurologist, Dr Adelaida Martinez, who wrote a letter to Sajid Javid final 12 months professing the success of the therapy.

A division of well being and social care spokesperson stated: “Our sympathies are with all sufferers and households coping with uncommon and onerous to deal with circumstances.

“The UK authorities has already modified the regulation to permit specialist docs to prescribe cannabis-based merchandise, the place clinically acceptable and in the most effective pursuits of sufferers, and we’re working intently with companions to ascertain scientific trials to check additional merchandise for security and efficacy.”

The UK authorities continues to argue that well being issues are devolved to Scotland and subsequently this can be a matter for the Scottish authorities.

Nonetheless, it’s understood that the choice lies with the UK Authorities as the problem is seen as an unlawful substance situation and never a well being matter.

A Division of Well being and Social Care spokesperson stated: “Our sympathies are with all sufferers and households coping with uncommon and onerous to deal with circumstances.

“The UK authorities has already modified the regulation to permit specialist docs to prescribe cannabis-based merchandise, the place clinically acceptable and in the most effective pursuits of sufferers, and we’re working intently with companions to ascertain scientific trials to check additional merchandise for security and efficacy.”