DMC0098
Written evidence from Mr Robin Emerson
From Robin Emerson
Campaigner for Medical cannabis and Father of Jorja Emerson.
Jorja is the first child to be prescribed Medical Cannabis after the law change in November 2018.
Reference - Health and Social Care committee evidence on Medical Cannabis
Dear Dr Sarah Wollaston MP, Chair
First, let me thank you for your response and in allowing me to submit evidence to the committee.
I saw that you had heard evidence from the patient advocacy group, End Our Pain, and I would be a supporter of their aims. Indeed, Peter Carrol spoke extremely well and passionately on the subject, and for that I am grateful to him. I do, however, think that there is no substitute for hearing it from the horse’s mouth, as the saying goes!
Unfortunately, as someone new to the system in Westminster and learning daily, I was not aware that you had been accepting evidence. I feel that being the only person since the law change to have met the obstacles and went through the system and is now at the other side of obtaining medical cannabis, that my evidence is extremely relevant and valuable in order to help you understand and gain a current overview on Medical Cannabis within the UK.
I was let down by our system when the Royal Victoria Hospital in Belfast diagnosed Jorja as having a decaying brain and told us that she was going to succumb to this. This was after they had let her stay in seizure for 17 hours before admittance to intensive care. To think they thought that I should simply watch my child die, I realised that it was time to gain help from elsewhere.
I firstly had to employ a law firm in order to simply gain access to Jorja’s medical records. The records were sent to Boston Children’s Hospital in America, who came back to say that it was of their opinion that Jorja did not have a decaying brain, nor was she going to succumb to it! They were clear in their belief that it was Jorja’s seizures and medication that needed to be controlled. This was later confirmed in Belfast after our legal team fought to obtain another scan at the Dundonald Hospital, which showed that Jorja’s brain had not decayed six months after her original diagnosis.
After this I became consumed in finding a solution to help control my daughters’ seizures. I searched globally for answers. I had seen the case of Billy Caldwell locally (this was before any national media on Billy).
I met with Charlotte Caldwell, Billy’s mother. I had seen the improvement that medical cannabis had given this young boy, and this set me on a course to find evidence abroad. I was not going to administer anything to my daughter without research.
I began to read a lot of global evidence on Medical Cannabis and Epilepsy. I had obtained studies from hospitals, including Sick Kids Hospital in Toronto, on a drug called Tilray.
It was around this time that I had started to campaign for Medical Cannabis in the UK.
I approached Jorja’s medical team in Belfast to write me a referral for Sick Kids Hospital in Canada, who had agreed to see Jorja but needed a referral. The paediatrician refused and kept running me around in circles with our legal team.
I knew the position of the NHS and that I was going to get nowhere quickly. By this time Jorja’s seizures had increased again to around 30 varying types of seizures a day!
I did a lot of research and decided to take Jorja to London to see a private Paediatric Neurologist. They were able to see clearly the bad condition that Jorja was in, having seizures in front of her. We spoke about Jorja’s poor quality of life, and the fact that she could hardly lift her head as she was on so many anticonvulsant medications. The neurologist said that all the medications she was on were basically the same type and that we had run out of options (as surgery was not an option)! I explained that I had also tried the legal CBD and that it did help, but I knew that Jorja needed whole plant medication.
I had told her about my research and she had seen herself cannabinoids being used before and being effective. I spoke about Jorja’s referral to Canada. She agreed and wrote Jorja a referral to Sick Kids Hospital.
Unfortunately, timing was bad, and when we sent in our referral Health Canada had made the decision after the Billy Caldwell case had went public to not accept anymore people from the United Kingdom.
I was not going let this stop me and I campaigned hard, along with others, in London. Then came the announcement that I had been waiting for - Sajid Javid had made the use of medical cannabis legal.
I asked Jorja’s Private Neurologist if she would now write the prescription. The date was now the 1st November 2018, and Medical Cannabis was now officially legal to prescribe in the UK. She read the guidelines and still felt comfortable, as we had agreed that Jorja had zero quality of life no other options and so this was worth a try. Jorja got a prescription for whole plant Medical Cannabis.
This again was short lived joy, as the same evening that I obtained Jorja’s prescription, I received an email stating that Jorja’s prescription was being rescinded as the BPNA had spoken with the Neurologist and strongly suggested not to write the prescription. Indeed, it was implied that the Neurologist would get in trouble if she did.
I was outraged that a drug had been made legal by the Home Secretary, who stood up in the house and made an announcement, and the government had held it up as a victory, yet I could not get access to it.
I spent a couple of weeks persevering. There was a lot of media pressure and help from End Our Pain and the APPG on medical cannabis, along with Keith Ridge, who all wrote to Jorja’s Neurologist to make it clear to her that it was her decision and she that she would not lose her job if she helped Jorja. Thankfully, the prescription was back in place. It was disgusting that a consultant felt that she could not help a child, who at the time was so ill in seizure, because of extremely confusing guidelines given by the BPNA. Thank goodness she did what she thought was correct for her patient.
Unfortunately, my hurdles continued. Once I got the prescription the next issue was getting the product imported into the country, as no one had done it before in a pharmacy. The hospital pharmacy had to get guidance in order to understand how to put the product on to their system. I knew the wholesalers who had brought medical cannabis in for Alfie Dingley and Billy Caldwell, so I was able to link them with the pharmacy.
Unfortunately, I cannot yet get it to a community pharmacy as it has to written on a different type of prescription! All of which has never been explained to the consultants, and does not appear on any guidance to inform them. I have since raised this with Director of Pharmacy for Northern Ireland.
Then came the news that Jorja’s pharmaceutical manufacturer of her medical cannabis, Tilray, could not supply Jorja anymore medication until the end of June. Jorja’s supply was due to run out in March.
After doing my research, I understood that I needed to obtain the same formula of Medical Cannabis for Jorja, as any change at this stage would pose too much of a risk. Thankfully, Aphria pharmaceutical stepped in to help after understanding the position that I was in, and the fact that the NHS has let Jorja down. They stepped in to do the job of the NHS and provide Jorja’s live saving medication - free of charge and covering all import costs until the NHS step up and cover Jorja’s medication!
I have battled myself, as you can see, and have proven that this works for Jorja. From previously having over 30 seizures a day, she is down to around 3-5, and some days just 1 or 2 - and there is still room to up her dose. What is equally fantastic is her development in the 12 short weeks since starting medical cannabis - Jorja has come further forwards in these weeks than in the last 12 months.
Her physio team cannot believe the difference in her. Her friends and family are amazed at the quality of life Jorja now has! Multiple videos and pictures, along with a diary, all shows the dramatic change in Jorja.
Medical Cannabis is not a cure and it will not work for everyone, but there certainly is enough strong global evidence to show that it works!
Our health system is not superior to Canada, and for anyone to suggest otherwise is arrogant, and I would suggest extremely poorly educated.
The list of countries that use medical cannabis continues to grow. Major European countries like Germany and Holland are at the forefront of this change!
I find it repulsive that the United Kingdom thinks that it is acceptable to let people die and suffer, rather than allow this medication to be implemented within the NHS.
I would like to address you to some facts that I feel are extremely important and unfortunately, I think have been completely overlooked in the current situation regarding medical cannabis in the UK.
Long term use of this drug is associated with severe withdrawal syndrome and can cause liver damage. It is noted as an extremely dangerous drug for long term use! This drug is used long term on children across the United Kingdom
This medication is freely used across the UK. No controlled studies have been done on Nitrazepam. Common side effects are drowsiness, ataxia, depression, hypotonia and cognitive slowing. Cases of sudden death have been noted. Jorja is prescribed this medication!
Other frequently used unlicensed AED’s include:
Sodium Valproate is one of the few licensed drugs that Jorja takes. Note that ‘licensed’ does not mean safe. Sodium valproate is the main drug used to treat epilepsy in the UK. We already know that it causes liver problems and fetal malformations. Studies also suggest that children with intractable epilepsy showed thinning of the parietal lobes, a lower brain volume and a lower white matter volume in their MRI scans. Patients who take sodium valproate for a long period of time see increased bone loss and therefore increased risk of osteoporosis.
Conclusion
As you can see from the above, the United Kingdom freely uses unlicensed and untested medication, especially in the treatment of intractable epilepsy.
Many of these medications are extremely dangerous with well-known side effects, but the real irony of the situation is that the AED’s above do nothing to help many of the children, and instead they continue to have multiple seizures, all while having a very poor quality of life!
Medical Cannabis has been effective in the use of intractable epilepsy for a number of years now in countries such as Canada., and there are a lot of high-quality studies to show this to be true. Double blind testing does not work for medical cannabis as it plant based and has a number of strains, and not a synthetic drug.
High level observational trials globally have shown medical cannabis to be a strong viable treatment of epilepsy. My daughter is an observational trial - the difference in Jorja is a complete night and day scenario.
When I heard the evidence against the use of Medical Cannabis at your hearing it all circled around the lack of trials. We can see that either Professor O’Callaghan and Professor Cross are simply unaware of the magnitude of unlicensed and untested medications, or for some reason they wish to simply single out Medical Cannabis and put it in a category with hoops that these other medications did not have to jump through in order to enable a clinician to prescribe them.
I have also heard Professor O’Callaghan say that he is not standing in the way of clinicians prescribing medical cannabis. Well, if that is the case then I would strongly advise that both the department of health and professor O’Callaghan remove the previously issued guidance from the BPNA as it misleads clinicians and is unfit for purpose.
The bigger issue that this has highlighted is the lack of trust the United Kingdom puts into our clinicians, and the fact that bureaucracy prohibits them from carrying out their job correctly. I believe entirely that Matt Hancock would be of the same opinion, that the clinician who knows their patient should be the person who makes the decision, and not have their hands tied behind their backs by trusts or organisations like the BPNA or RCP.
The clear way forwards is to remove the guidance from the BPNA, who have no legal standing within health other than a registered charity that paediatric neurologists can choose to join. I will also highlight that they are funded by pharmaceutical companies. Remove the guidance from the RCP, who equally have no official standing within our health system.
Allow the actual treating clinician to make the decision. We ask clinicians daily to make life and death decisions, yet we patronize them with guidance and prohibit them from making decisions on subjects like this.
The next step to move this forwards must be to organise various immediate observational trails that children with severe epilepsy and adults with chronic pain could be put on. These trials could be set up in a number of weeks and will provide the UK with data on medical cannabis.
I urge this committee to take this situation extremely seriously. Children and adults in the UK are suffering and dying needlessly. I am happy to meet the committee or chair to talk over my experience and offer and help with moving this process forwards.
Regards,
Robin Emerson