The families of children using medical cannabis to prevent seizures are asking MPs to make it accessible on the NHS ahead of a parliamentary debate led by Christine Jardine.
Liberal Democrat, MP Christine Jardine will call on Health Secretary Sajid Javid to ‘fulfil the promise’ he made in 2018. Despite medical cannabis being legalised in the UK in November 2019, there are only a handful of prescriptions on the NHS. Parents have been left paying up to £2000 for private prescriptions.
This evening, I will urge the Government to take the necessary steps to ensure medical cannabis can be prescribed on the NHS and ease the burden on so many families throughout the UK.https://t.co/YVJtpiKh5E
— Christine Jardine (@cajardineMP) September 6, 2021
Director of End our Pain, Peter O’ Carroll said it’s a complete failure of policy.
“End Our Pain as a campaign is enormously grateful to Christine Jardine MP and all the other MPs taking part in the parliamentary debate this evening. We had a law change on the first of November 2018 and it’s heartbreaking to know that since that change, which was inspired by the campaigning efforts of families with children affected by severe epilepsy, there are still only three NHS prescriptions for that life-transforming medicine.”
“Two of those have gone to children that are at the centre of the campaign so the bottom line is that we’ve got through a lot to legalise it but we’ve got practically no access. Even private access has now been severely restricted because there are only a handful of paediatric neurologists subscribing it. I think it’s a total failure of government policy and it needs to be called out.”
“There is no better place to do that than in the Houses of Parliament. We hope it’s another reminder to ministers and to number 10 that this issue won’t go away. You’ve got desperate families having to raise thousands of pounds during a pandemic to keep their children safe. It’s unforgivable it’s been allowed to go on for so long.”
Campaigner and parent of Alfie Dingley, Hannah Deacon is happy an MP is raising the issue but highlighted that there is more to be done. Speaking to Cannabis Health News, Hannah said: ‘The law changed on 1st November 2018 which meant medical cannabis products could be prescribed on the NHS, sadly this policy change has completely failed and parents, patients and families have been thoroughly let down.”
“The Government seem to have washed its hands of all the issues and we are very pleased that MP’s will again raise this issue in parliament. The reality of people having to raise money to pay for this legal medicine is totally unacceptable and we urge the Government to find a way out of this mess urgently.”
Petition and parliamentary debate
Campaigner and mum to Murray Gray, Karen Gray is hoping Sajid Javid will do the right thing and implement change. Speaking with Cannabis Health News, she said: “Christine Jardine, our MP, will be explaining to Sajid Javid why it’s important that he listens and implements a change, which will be a solution for all of us asking for our children’s cannabis oil medication to be prescribed through the NHS. It’s critical that the Health Minister listens and acts on the request. Our children’s lives are in his hands to do the right thing.”
A number of celebrities and politicians have also supported the campaign including Alastair Campbell, Sir Patrick Stewart, Joanna Lumley and Russell Brand. The former leader of the Green party, Caroline Lucas and leader of the Liberal Democrats, Ed Davey along with 70 other MPs have also voiced support.
Please write to your MP using the link below to ask them to attend an important debate in Parliament on Monday evening. Medical cannabis access on the NHS is still not available to all who need it. We still have a lot of work to do! Help us. @End_Our_Pain https://t.co/EjZ2Kz9pMf pic.twitter.com/r19NF0HNXm
— Hannah Deacon – Alfies Hope (@Hanseizuremum) September 2, 2021
The End Our Pain website allows users to search for their MP using their postcode. It before presents a template that can be sent to MPs asking for their attendance at the parliamentary debate
The template reads:
“It has been almost three years since the landmark decision on 1st November 2018 to allow cannabis-based medicines to be prescribed in the UK. However, nearly three years later, there still remains an almost total block on NHS prescriptions. Despite the high profile campaigns of families including that of the then 6-year-old Alfie Dingley which ensured the law was changed, only two other children have access to NHS prescriptions in addition to Alfie.
Instead, dozens of other families are forced to pay up to £2,000 a month for a private prescription for medical cannabis. Many of these families campaign under the End Our Pain banner and have seen a sustained reduction in the number of seizures and significant improvements in quality of life since their children started taking this medicine.
The prohibitively high cost of these private prescriptions has left many families reliant on fundraising to meet the monthly fees. The ongoing COVID-19 pandemic has rendered fundraising almost impossible and for many, the funds are running out. These families are now at emotional and financial breaking point.
In addition, the situation is now so dire that in a matter of weeks there will only be one UK paediatric neurologist prescribing privately for children suffering from severe epilepsy in the whole of the UK.
I’m asking you to support the End our Pain families and attend this debate to ensure these children are able to access this life-transforming medicine on the NHS. Having waited for so long already, time is running out for many of these families. Your support is essential to ensuring the Government establish an urgent solution to this crisis.”
GMC must address “serious concerns” over BPNA guidelines on prescribing medical cannabis
An open letter has been signed by more than 30 parents and carers of children with intractable epilepsy
Dozens of parents whose children rely on medical cannabis have written to the General Medical Council (GMC) outlining their concerns about the blocks to access.
More than 40 parents and carers of children who are prescribed medical cannabis to treat conditions such as intractable epilepsy have signed an open letter to the GMC outlining a number of issues.
Earlier this week, 50 medical professionals issued a letter from the Medical Cannabis Clinician’s Society, expressing their concerns over the British Paediatric Neurology Association (BNPA) guidelines on prescribing unlicensed cannabis medicines.
The letter, which was published in the Times, claims that the guidelines play a part in denying medical cannabis treatment for children with epilepsy, many of whom have had their lives significantly improved it.
It includes a comment from an expert witness in a case brought to the GMC by the BPNA, reported as stating that: ‘The BPNA position that only paediatric neurologists should initiate treatment is not supported by other national guidance, and probably not in the best interests of children, as it may impede debate and research into the appropriate use of Cannabidiol (sic) in refractory epilepsy’.
In response the parents of these children say they felt moved to write directly to the GMC to express “serious concerns”.
In the letter they stress that they feel the guidance issued by the BPNA plays a significant role in preventing doctors from prescribing.
It states: “The quote from the GMC expert witness highlights that the BPNA guidance is ‘not supported by other national guidance’.
“From our knowledge of these matters, we believe that this other national guidance may well be that from NHS England, NICE and indeed, to some extent, your own.
“If a professional medical body is producing guidance that is ‘probably not in the best interests’ of the patient cohort at issue, surely that matter should be investigated and then appropriate steps taken to ensure that the guidance in question is corrected?
Speaking with Cannabis Health, Joanne Griffiths, mother of Ben, 11, who suffers from treatment-resistant epilepsy, said: “We felt moved, as a group of parents and carers with loved ones affected by intractable epilepsy, to write to the GMC to ask that they address what we believe to be serious concerns relating to the BPNA position on the prescription of medical cannabis following the recent article in The Times.”
Joanne added: “This is clearly extremely concerning and needs to be addressed. The almost total block on NHS prescriptions is causing untold huge emotional and financial distress to our families.”
The letter states: “Without exception our loved ones have shown very significant improvements in their symptoms following the administration of medical cannabis.
“In many cases, the improvements could more accurately be described as ‘dramatic’ with children who were suffering up to hundreds of seizures a day and being rendered semi-comatose due to the effects of conventional pharmaceutical drugs being able to lead almost normal drugs.
“However, since the law change, to the best of our knowledge, there have only been three NHS prescriptions for whole-plant extract medical cannabis for cases of paediatric epilepsy. The rest of us have had to face the daunting and emotionally and financially draining burden of having to find up to £2,000 a month to fund the medicine privately
“Raising this money is a massive challenge in normal times. During Covid, it has been impossible.”
The parents have now called on the GMC to address their concerns, stating that failure to do so may mean doctors may be “unwittingly failing” in their ethical duty to patients.
“Children’s lives are at risk” – let GPs prescribe medical cannabis, says paediatric neurologist
Dr Adelaida Martinez has called for GPs to be able to prescribe medical cannabis to children with severe epilepsy.
A leading paediatric neurologist has called for GPs to be able to prescribe medical cannabis to children with severe epilepsy.
Dr Adelaida Martinez, a consultant at the Portland Hospital for Women and Children in London, is one of the few paediatric neurologists who prescribed medical cannabis to children with retractable epilepsy.
Dr Martinez, who has now retired, has written to the Health Secretary Sajid Javid outlining her concerns for these patients, who without access to this medication would be left “fighting for their lives”.
The words come following the publication of an open-letter signed by over 50 healthcare professionals about the British Paediatric Neurology Association (BPNA) guidelines, which they say prevent doctors from prescribing cannabis-based medicines.
Dr Martinez claims that she has looked for an alternative paediatric neurologist to take over her patients but this has proved to be “extremely difficult”. According to the letter there is currently only one doctor in the UK taking patients on a case by case basis through a private clinic.
There are real fears among patients and their families that the lack of paediatric neurologists willing to prescribe medical cannabis in the UK will leave patients unable to access this medication at all.
Calls for GPs to prescribe
Dr Martinez wrote to the Health Secretary before retiring just days ago, but so far there has been no response.
In her letter she calls for a policy change to allow GPs to prescribe, as is the case with other unlicensed, controlled medicines.
Currently in the UK only specialist consultants are permitted to prescribe unlicensed cannabis medicines or a GP under the consultant’s direction.
Dr Martinez wrote: “Children who have epilepsy which is alleviated by cannabis medication should be able to have prescriptions fulfilled by their GPs. This is exactly the same process as already exists for any other type of unlicensed controlled drug in the United Kingdom.
“I know a majority of the GPs dealing with this group of children wish to prescribe but in order to do so this requires a change in policy… because it is CBD medication which has been treated differently to other controlled drugs.”
Parents are concerned that their children’s lives will be placed at risk without access to this medication.
According to Dr Martinez, most have been taking it for at least two years and have been “stable or significantly improved” during this time.
Karen Gray’s son Murray, has a rare form of epilepsy known as Doose syndrome. He has been seizure free for over two years on medical cannabis.
Karen told Cannabis Health: “A policy change is all we need to secure our children’s prescriptions. Without this medication, our children’s lives will be at risk. Our GPs are willing to write the prescriptions, however Sajid Javid is the only person that can make this happen.”
California governor signs ‘Ryan’s Law’ allowing cannabis for terminally ill patients
Ryan’s Law is allow for medical cannabis use for terminally ill patients on hospital grounds although it will not allow smoking or vaping
Ryan’s Law or The Compassionate Access to Medical Cannabis Act would allow patients to use medical cannabis in certain situations on hospital grounds.
California Governor Gavin Newsom has signed Ryan’s Law legislation into law to expand end-of-life treatment and pain relief options for terminally ill patients.
In a press release, Senator Hueso who raised the bill stated: “It is inconceivable to me that, in a state where medical cannabis was legalized more than 25 years ago, those in deepest suffering receiving treatment in our state’s healthcare facilities cannot access this proven, effective, and prescribed treatment.”
“Instead, terminally-ill patients in California healthcare facilities are given heavy opiates that rob them of their precious last moments with family and friends. This is a simple, yet critical, move that will provide relief, compassion and dignity to terminally-ill Californians.”
Members of the California Assembly and Senate advanced legislation to the governor’s desk earlier this year, which would allow medical cannabis products in hospitals and care facilities. The bill, Senate Bill 311 provides for a terminally ill patient’s use of medical cannabis within a healthcare facility. It will prevent patients from using inhalers or vapes and bans cannabis from the emergency room.
The legislation was partly inspired by a father who was initially denied access to cannabis at a California hospital while his son was dying from cancer. Jim Bartell eventually gained access to a facility that allowed the treatment and said his son’s life dramatically improved in his final few days.
In July, the bill’s sponsor, State Senator Ben Hueso, drafted a letter to the US Department of Health and Human Services to inquire if allowing cannabis use on hospital grounds may cause issues with federal funding. Senator Hueso has repeatedly fought to allow cannabis use in medical facilities for terminally ill patients.
So far, only a few states allow cannabis products for hospitalised patients such as Maine and Connecticut.
I’m respectfully requesting that CMS & HHS provide clarification assuring Medicare/Medicaid providers they won’t lose reimbursements for allowing #medicalcannabis use on their premises. This would go a long way to help hospital staff, security &, above all, patients. @SecBecerra pic.twitter.com/Zh9CJtujxc
— Senator Ben Hueso (@SenBenHueso) July 29, 2021
The California State Assembly voted 57-1 to approve the bill earlier in September, and the Senate approved the other chamber’s amendments in a 36-1 vote.
The bill reads: “(it) would require specified types of health care facilities to allow a terminally ill patient’s use of medicinal cannabis within the health care facility, subject to certain restrictions,”
“The bill would require a patient to provide the health care facility with a copy of their medical marijuana card or written documentation that the use of medicinal cannabis is recommended by a physician.
“The bill would require a health care facility to reasonably restrict the manner in which a patient stores and uses medicinal cannabis to ensure the safety of other patients, guests, and employees of the health care facility, compliance with other state laws, and the safe operations of the health care facility.”
Although this attempt has been successful, it was originally vetoed by Democratic Governor Gavin Newsom who was concerned it could create conflict between federal and state law. Newsom has only just defeated a recall attempt after voters chose him over a Republican candidate.
The US Hemp Round Table, A cannabis coalition group stated: “We’re excited to report that a final deal has been reached with Governor Gavin Newsom to move to the final passage of AB 45, our long term effort to explicitly permit the retail sale of hemp-derived extracts such as CBD in California. And a highlight of that compromise was the removal of language to ban hemp smokables in the state – replaced by a phase-in approach that will permit their sale to adults and the immediate manufacture of smokable products to be sold in other states.”
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