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“BPNA rules deny safe treatment for children”– clinicians write open letter to Sajid Javid

Fifty medical professionals have signed an open letter expressing their concerns over the BPNA guidelines

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Sajid Javid - medical cannabis patients

Fifty medical professionals have signed an open letter expressing their concerns over the BPNA’s guidelines on medical cannabis.

The Medical Cannabis Clinicians Society (MCCS) has issued an open letter to the Secretary of State for Health, Sajid Javid to highlight their concerns about the British Paediatric Neurology Association (BPNA) guidelines, which they feel deny medical cannabis treatment to children with epilepsy.

Fifty medical professionals have signed the letter, which states that there is now ‘overwhelming evidence of the efficacy of medical cannabis for children with treatment-resistant epilepsy’. It highlights that children are being denied NHS prescriptions for cannabis-based medicines despite the evidence showing it could be life-transforming for them.

It goes onto say that the BPNA appears to be opposed to the prescription of medical cannabis products and want yet more evidence concerning the safety and efficacy, alongside concerns about the unlicensed nature of the medications.

BPNA guidelines published in 2018 on cannabis‐based products for medicinal use for children and young people with epilepsy, state that the body does not recommend the prescribing of products containing THC due to a “lack of evidence of safety or efficacy.”

The letter states: “The British Paediatric Neurology Association (BPNA) declares itself to be the professional medical body for paediatric neurologists. Apart from a specific brand (which is not full spectrum) in very limited circumstances that has been through the conventional licensing system, the BPNA appears to be very much opposed to the prescription of medical cannabis products. From what we understand, they appear to want to see more evidence about safety and efficacy and are concerned that these ‘full spectrum’ products are unlicensed.”

BPNA letter

The letter highlights that the BPNA by deterring private prescriptions and blocking NHS prescriptions forces vulnerable families into fundraising.

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There are currently just two paediatric neurologists prescribing for children with one due to retire in October. The authors are concerned that this would mean those with prescriptions may suffer rebound seizures if they cannot find someone to prescribe.

They wrote: “The BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death. It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions. This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.

“Our concern is that what appears to be a deeply entrenched and dogmatic position on this subject from the BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death. It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions. This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.”

BPNA: A pile of piles, bottles and CBD oil. A dropper lies on its side with yellow oil in it. There is a cannabis leaf on the left side

Action required

The MCCS outline four steps in the letter that they feel the BPNA and the wider paediatric community should take. These include: consider real-world evidence, treat individuals case by case, recognise the recently clarified NICE guidelines and advocate for full-spectrum medicines when appropriate.

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It also suggested that they take up the MCCS offer of training.

It added: “Take into account the recently clarified NICE guidance which now recognises that cannabis prescription is reasonable if all else has failed and a child has responded to the medicine. Patients in this population can be prescribed cannabis-based medicinal products if the healthcare professional considers that that would be appropriate on a balance of benefit and risk, and in consultation with the patient, and their families and carers or guardian…. There is no recommendation against the use of cannabis-based medicinal products”.

The letter finishes with two suggestions to Sajid Javid, that he support their calls to the medical paediatric community and works with the NHS to remove the barriers to accessing medical cannabis on prescription.

Read more: MS patients denied access to life-changing cannabis drug

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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

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Ben Griffiths, 11, who suffers from treatment-resistant 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.

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“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?

GMC must address families denied access

Ben Griffiths, 11, who suffers from treatment-resistant epilepsy, and mum Joanne.

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.”

Open letter

The parents also highlight the ‘dramatic’ benefits of medical cannabis for these children, but says that the lack of prescriptions on the NHS means parents are facing the ‘daunting and emotionally and financially draining’ burden of finding the money to fund the medication privately.

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.

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“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.

The letter is open for other parents to sign and can be accessed through the Boisterous Ben Facebook page or Twitter.

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“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.

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Murray Gray has been seizure free for over two years on medical cannabis.

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.

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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.”

Future prescriptions

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.”

Read more: CBD may reduce effects of anti-seizure medication

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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

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California: Two white tubs of medical cannabis on a wooden surface. A doctor is writing a prescription

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.

California Bill

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.

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So far, only a few states allow cannabis products for hospitalised patients such as Maine and Connecticut.

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.”

California government

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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