When Ava Twomey was diagnosed with a rare form of epilepsy as a baby her parents were told she’d never walk or talk – and might not live beyond the age of three. She would also be in residential care for the rest of her life, experts said.
Now aged seven, Ava (pictured) not only walks, but can dance, and loves chatting, mostly about Red Riding Hood.
“She’s even started getting an attitude,” says her mother Vera, who attributes her daughter’s remarkable progress to cannabis.
Her case has added fresh momentum to the push to legalise medical cannabis – in her native Ireland as well as the UK – for people with debilitating brain conditions.
Ava has Dravet syndrome, a catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/ or prolonged seizures.
It can be life-threatening and severely life-limiting - causing numerous challenges including developmental delay, movement, balance and growth issues, chronic infections, body temperature regulation problems and orthopaedic conditions.
Vera, who lives in Cork with her husband Paul and three other children, says: “We were in a very dark place with our daughter and her life was in danger on a daily basis. She could have six or seven seizures together and we didn’t know if she’d wake up.”
In the darkest chapter, Ava (pictured) suffered a heart attack brought on by the severity of her seizures, and spent eight days in a coma.
The turning point was the discovery that medical cannabis could do what many other drugs had failed – hold off Ava’s seizures.
“Ava had been experiencing about 20 tonic-clonic seizures [causing stiffening, rhythmic shaking and unconsciousness]. She could have a hundred absence seizures on top of that so she was staggering from seizure to seizure, never recovering before the next one came along. We would be in and out of hospital and Ava essentially spent every winter there.”
In October 2016 Vera discovered CBD oil, a legal, non-psychoactive compound of cannabis.
“The difference was like being on another planet,” she says. Over three months, Ava would normally have had around 500 tonic-clonic seizures. In the first three months with CBD, she barely had 20. As time passed, however, seizure levels began to creep back up.
“Dravet is a wicked condition in that it navigates its way around whatever medication is put into the body to bring the seizures back.”
The Twomeys then began reading about epilepsy treatments with THC, the principal psychoactive component of cannabis.
While CBD is legal in the UK, THC is not – as is the case in Ireland, save for one or two hard-fought exceptions.
Vera and Paul campaigned for three years to get THC treatment for Ava, with Vera walking 300km from her home to the Irish parliament to highlight the plight of children like Ava.
Eventually the couple took Ava to Holland last summer to access the treatment there and, after showing huge improvement, were granted a special licence by the Irish government in November 2017.
“The government would probably say the decision was because we provided answers in the drugs trial, but in reality it was probably because there was a groundswell of support for Ava. There was a lot of anger in Ireland that a sick child should have to go to another country to get treatment.
“When the THC was introduced, the change in Ava’s cognitive ability was absolutely staggering. Words started to come more often and her balance improved. These things started with CBD but accelerated with the THC.
“Since June 2017, the tonic-clonic seizures have entirely gone. That in itself is staggering. In terms of seizures now we just have to worry if her temperature gets high and she might give out a little shout and shake for a few seconds and then she’s back with us. That’s about as bad as it gets.”
Ava takes CBD oil alongside the THC product – effectively cancelling out the psychoactive element of THC.
“The CBD prepares the body for the THC, which does not result in her being high or stoned. Ava takes her medication and is well, coherent and balanced. There are massive side-effects, but every side-effect is positive.
“She has better balance, better sleep, better appetite, clearer eyes, she’s more engaged and the seizure control is extraordinary. She’s also pain free and is going to school more often.
“She is a very happy little person, but she’s had a very painful life. Now that things are under control, she plays more with jigsaws and Lego and likes to dance, which she couldn’t do before. She loves Little Red Riding Hood, so to hear her say ‘what big eyes you have’ recently was extraordinary.
“I wish with all my heart that we could have introduced these treatments to Ava when she was 18 months old. We could have stopped the seizures, which have done significant damage to her brain. She will improve and she will get better, but if the damage hadn’t been done we could have brought so much more out of this child.”
Vera believes the UK, Ireland and indeed any other nation where medicinal cannabis is illegal, should look to emulate the Netherlands.
“It was the most amazing experience to see doctors in Holland that actually listen to you. Nobody listened to us in Ireland. My understanding from talking to parents in the UK is that nobody is listening to them either about cannabis. There is such opposition to even talking about it.
“In Holland they were saying ‘you’ve tried 11 different forms of epilepsy medication. It is logical that you would then try CBD and THC for Ava’s seizures. You have tried everything else. It has been proven to work’.
“I couldn’t understand how neurologists in Holland are qualified to the same degree as neurologists in England or Ireland. They are each other’s peers. Yet only in Holland could they see the logic of treating such a catastrophic form of epilepsy with medical cannabis because the risk was so low and the chance of getting positive results would be so significant to the improvement in the child’s life.
“I can’t understand why neurologists in England and Ireland can’t look to Holland and engage with the neurologists there and emulate their empathy and professionalism and experience.
“They have such a wonderful system there that I don’t know why doctors in England and Ireland aren’t rushing to be engaged with them for the sake of their patients.”
To date only three special licences like Ava’s have been issued in Ireland. In the UK, the case of Alfie Dingley could open the door to legalisation.
Parents of the epileptic six-year-old have issued a petition with 370,000 signatures to Number 10, calling for access to medical cannabis.
It remains to be seen whether this is enough to shift a fairly deep-rooted government stance against legalisation. Some political figures are hopeful, however.
“I am more optimistic than I ever have been,” says Baroness Meacher (pictured), chair of the UK All-Party Parliamentary Group for Drug Policy Reform, which recommends decriminalisation of drugs.
The life peer has been a prominent, crossbench voice of support for medicinal cannabis legalisation.
In recent years she has led a House of Lords debate on drugs policy and contributed to influential reports on the issue.
She says: “It’s very interesting that Jeremy Corbyn has consistently made it clear that the Labour Party supports legalisation of cannabis for medicinal use. This is the first time that a major political party has made that position abundantly clear.”
Further optimism comes from the handful of Conservative MPs straying from the party line that the government has “no intention” of legalising cannabis as it considers it as “not having any medicinal benefit”.
“We have six Conservative party ministers, in the home affairs department and the Department of Health, all supporting the need for Alfie Dingley to have cannabis medicine to alleviate his absolutely appalling seizure rate.
“So six ministers in this government all accept that cannabis has been a remarkable medicine for this particular child.
“Once you have that recognition…and the neuro-paediatrician in the Netherlands believing that, with a tiny bit more THC, Alfie could improve further, then it is actually unsustainable to have cannabis classified within Schedule 1, which defines dangerous drugs with no medicinal value.
“Even if cannabis only helped one child as a medicine, that would refute its Section 1 position, so it should be moved out of that definition.”
Officially at the time of writing, Home Office ministers are “exploring every option” for Alfie Dingley, following a meeting with his family.
According to reports, a three-month trial led by Alfie’s doctors and based on sufficient and rigorous evidence” could be in the offing.
Baroness Meacher (pictured) suggests research is merely being used as an excuse to avoid or delay addressing the growing calls for legalisation.
“Home Office officials are clearly worried about recognition of cannabis as a medicine because they would have to change the schedule.
“They are demanding that Alfie is granted a licence for research purposes only, but the research population would be one and you would have no control group. It is a complete fig leaf I’m afraid and that is the sticking point – they will only agree to a licence if the child is seen as a research object.
“My impression is that ministers seem very open to getting on with things but they feel hamstrung by their officials.
“The evidence is now so strong and we have opened this up with ministers through the Alfie Dingley case. I think this is now the beginning of a new debate in parliament and we need to pursue it.”
The former social worker sees pressure mounting on the government from all angles, with many sources urging it to soften its stance.
Major charities like the Multiple Sclerosis Society are among those lobbying for change, with a survey it conducted suggesting that 72 per cent of people with MS support legalisation for medicinal purposes.
Others include spinal injury organisations and support groups for people with anxiety. Even traditionally Conservative-leaning newspapers are on board, says Meacher, pointing to a recent supportive article in the Daily Mail on a young rheumatoid arthritis sufferer whose life was transformed by cannabis.
“Things are definitely shifting in a way they never have before. We know 74 per cent of the public agree that cannabis should be regulated and legalised for medicinal purposes. So public opinion would be behind the government if they were to change things.”
Stephen Murphy (pictured), who consults on Europe’s legal cannabis industry, believes it will be financial implications – if anything – that change the current government’s approach.
“The UK argument is going to be economic,” says the co-founder of Prohibition Partners, which advises entrepreneurs, businesses, investors and regulators about legal cannabis markets.
“Unfortunately the social and health aspect, that sees hundreds of thousands of patients actually using this in the UK daily, hasn’t seemed to have had any influence on the political establishment.
“The current government hasn’t shown any intent on the back of the social or health perspective so I believe the motivation will come from economics. It is going to come down to financials. How much can this save the NHS and how much can this make the exchequer?”
Britain’s economy already benefits from medicinal cannabis; the UK is the world’s largest producer and exporter of legal cannabis for medical and scientific use, figures from the UN’s International Narcotics Control Board show.
In 2016 the UK produced 95 tonnes of legal cannabis – 44.9 per cent of the world’s total. A significant portion goes towards a cannabis-based medicine called Sativex, produced by GW Pharmaceuticals.
It is available on prescription for patients such as those suffering the effects of multiple sclerosis, but only on the NHS in Wales.
Murphy says: “One of the biggest cannabis production companies in the world is based here producing one of the leading global cannabis products. It’s ridiculous that we can’t treat UK patients with it.
“This industry can give life to towns or cities that have struggled. It is unlike any other because, even though it is an emerging and pioneering industry, we already know what the demand is, we know its usage and the value of it, so there is a lot of guesswork taken out of it.
“The big companies all have evidence of how this could be turned into potential business for the exchequer.”
If money is to be the motivator for legalisation, the UK may look to follow Germany’s lead. Since medical cannabis was legalised in April 2017, work has been underway to breathe life into a burgeoning industry.
“Germany wants to create its own domestic cannabis industry where production comes from Germany. Currently they import from Canada and the Netherlands but there are a number of producers bidding for licences to produce and supply domestic cannabis within Germany. That would allow them to control and monetise it, and create jobs.
“A lot of governments see medical cannabis as a way of boosting their pharma and agricultural industries. They want to position themselves as leaders in understanding how big and how widely used medical cannabis will be.”
The UK might also learn from teething problems being experienced in Germany as legalisation beds in; although Britain’s already-established production capacity gives it an advantage.
“If you want to import medical cannabis to Germany, you can only get a licence for one batch at a time. There are also limitations with the quantity, volume and variety of what’s being imported.
“Every batch needs to be improved to allow the patient to get a proper understanding of the consistency of the medicine, which may change depending on what’s available.”
There are also inconsistencies in prescriptions.
“The gatekeepers are the doctors but, where one might prescribe medical cannabis, another will not. A huge job needs to be done to educate them on the benefits and to tackle the stigma that they don’t actually know anything about it and so are not confident enough to prescribe it.”
Currently medical cannabis is legal in 12 European countries, with each market relying on its own laws in the absence of any Europe-wide legislation or guidelines.
“How it is implemented in Germany is very different from in Poland, Denmark or Italy, for example. Each state is deciding how best it fits their medical system. While Germany is implementing it straightaway into the health system, Denmark is taking a four-year research and development approach to better understand where it can be applied.”
Closer to Westminster, the Channel Islands are in the early stages of legalisation. Jersey and Guernsey have taken their own stance on cannabis as self-governed isles outside the UK but British Crown dependencies.
Unlike the UK government, the Channel Islands are keen to import, grow and distribute medical cannabis.
Supply issues and legislative challenges are currently being grappled with. A January vote in the Welsh Assembly, meanwhile, saw a majority back calls for cannabis for medicinal uses to be legalised. In Northern Ireland too, progress is afoot.
Billy Caldwell, an 11-year-old from County Tyrone with life-threatening epilepsy, last year became the first person in the UK to be prescribed medicinal cannabis. Could such developments influence change at Whitehall?
“Places like Jersey, Guernsey, Stormont and the Welsh Assembly can all form together to put greater pressure on centralised government to reform.”
This pressure, and the prospect of a “really exciting and sophisticated cannabis industry in the UK”, gives Murphy optimism that a UK legislative change will happen at some point.
How soon, however, could depend on the continual presentation of irrefutable evidence and the stubbornness of patient families like the Twomeys and Dingleys.
Cannabis and neuro-rehab: The facts
The All-Party Parliamentary Group for Drug Policy Reform (APPG) published an official report into cannabis in 2016 – featuring a number of conclusions relevant to neuro-rehab.
Eighteen months on, its author, consultant neurologist professor Mike Barnes, insists its findings – that cannabis does indeed have medicinal benefits – should be heeded by UK lawmakers.
He says: “It is essential that cannabis is legalised for medical use in order to alleviate suffering of those with pain and spasticity in neurological conditions.
“Legalising it will help many thousands of people in the UK, not just with neurological conditions but for other challenges including mental health and gastrointestinal problems.”
The findings of the report included:
- There is good evidence to show that cannabis, including the non-psychoactive component CBD, can help to treat chronic pain, spasticity, nausea and vomiting and anxiety.
- Cannabis products nabilone, dronabinol, nabiximols and smoked marijuana have all been shown to be efficacious to varying extents in a variety of pain settings in good quality studies.
- Moderate evidence shows that it helps to stimulate appetite, which may also be relevant to neuro-rehab units.
- There is good evidence for the efficacy of the cannabis extract nabiximols for reducing patient-reported spasticity symptoms, although there is not firm evidence for improvement in objective measures. There is good evidence of safety in the long term and for continued efficacy.
- There is moderate evidence for the efficacy of oral cannabis extract for reducing patient-reported spasticity scores.
- CBD has been shown to reduce anxiety whereas THC, the psychoactive part of the drug, usually has the converse effect.
- Overall, there is good evidence for CBD use in anxiety. This evidence base includes a double-blind, randomised, placebo- controlled clinical study led by Bergamaschi in 2011. It showed that orally-administered CBD was associated with a significant reduction in anxiety, cognitive impairment, and discomfort in patients suffering from generalised social anxiety disorder subjected to a simulated public-speaking test.
- There is a theoretical basis to suggest that cannabis could have implications for epilepsy. While animal model and early human studies are promising, however, at the moment robust trials are lacking but further results are awaited.
There is a theoretical basis to suggest that cannabis could provide neuroprotection in the context of traumatic brain injury, but as yet, evidence is limited and unconvincing.
Is there a risk of schizophrenia?
The perceived link between cannabis and schizophrenia is one of the most compelling arguments against the general legalisation of the drug.
Some parents who have seen their children descend into psychosis after taking cannabis over a prolonged period understandably oppose legalisation. Others believe regulation would stop young and vulnerable people accessing particularly potent or dangerous products.
According to the APPG for Drug Policy Reform’s official report, most literature supports a causal hypothesis between cannabis use and psychosis, particularly if usage starts at an early age and if the individual has a genetic predisposition to psychosis.
But it is unlikely that any one environmental factor (such as cannabis use) or any one gene can cause schizophrenia on its own.
It appears that cannabis is a component cause in the development of symptoms of schizophrenia and the onset of this mental illness depends upon many interacting factors.
However, it is also worth noting that most people who use cannabis do not develop schizophrenia, and most people with schizophrenia have never used cannabis.
It is likely that THC is the main cannabinoid which triggers schizophrenia and psychosis. CBD, on the other hand, is known to be anti-psychotic and may have a therapeutic role as an anti-psychotic agent although further studies are required, the report says…
Study reveals undetected rare neurodegenerative disorder that looks like Parkinson’s disease
A joint study by the National Neuroscience Institute (NNI) and Singapore General Hospital (SGH) has revealed that patients who have been diagnosed with Parkinson’s disease might actually have NIID instead.
NIID is a disabling neurodegenerative condition due to a gene mutation and has no effective treatment. Symptoms of NIID include dementia, Parkinsonism, poor balance, as well as numbness and weakness in the limbs.
A patient with NIID may or may not experience symptoms, depending on age and stage of disease. The severe form of NIID is usually seen in older patients, where the disease has progressed to an advanced stage.
The team studied more than 2,000 study participants, comprising healthy individuals and those with Parkinson’s disease (PD), over more than a decade. They were surprised to find NIID-causing mutations in those diagnosed with PD.
Dr Ma Dongrui, first author of the study, says: “To our knowledge, this is the first study reporting PD patients with NOTCH2NLC gene mutations as seen in NIID patients. Thankfully, they responded to PD medications better than most PD patients do. This suggests that there must be factors that can influence why some develop PD while many others develop the more severe form of NIID.”
While analysing the NIID gene, the team found a group of healthy participants who had a “milder” form of mutation. Such mutation in the NIID gene could indicate that they are at risk of developing NIID or PD. Since NIID can go undetected, a high index of suspicion may be needed even in PD patients.
Professor Tan Eng King, deputy medical director and director of research, NNI, says: “With what we know now, it might be beneficial for clinicians to be watchful of early cognitive impairment or imaging evidence that may suggest NIID in patients diagnosed with PD. As NIID is caused by a genetic mutation, it also may be worth looking out for family members of PD patients who may show signs of NIID.
“Our findings suggest that many neurodegenerative diseases overlap and may share a common etiology. Finding a common link and uncovering the reason why a similar gene mutation leads to both mild PD and a severe form of NIID can help identify new drugs for these conditions.”
Following this study, the team plans to conduct more studies to better understand the mechanism behind NIID and identify new drugs for this condition.
More research is needed to understand if the broad clinical phenotype of NIID is related to the subtle genetic differences at the NOTCH2NLC gene locus, race or other factors. Long-term follow-up of carriers of the gene mutation with PD phenotype may provide additional clues.
Stroke survivor takes on ambassador role with rehab tech company
Rehab technology firm GripAble has appointed stroke survivor Kate Allatt as an ambassador.
Kate suffered a rare, massive brain stem stroke at the age of 39, and then went on to develop locked-in syndrome. Doctors said she’d never walk, talk or be able to use her arms again.
But the mother of three defied all predictions, and today, she is a credible and trusted peer mentor, global influencer, and voice for stroke and locked-in syndrome survivors.
The internationally published author of three books, including the acclaimed ‘Running Free – Breaking Out from Locked-in Syndrome’, says that her role as GripAble ambassador is founded in partnership and collaboration.
“As GripAble ambassador, I am working closely with the GripAble team, to inspire fellow stroke survivors to be the best version of themselves, and support the occupational and physical therapists and healthcare professionals working with them.
“GripAble is a smart mobile assessment and training device that helps people with weak or weakened movement in their arms and hands after suffering a stroke. I have used and been shown lots of very expensive and inaccessible tech and robotic machines and gizmos that have been developed to support therapists and patients with their rehab, but GripAble is entirely different. It takes down the barriers, is simple to use – including at home – affordable and accessible.
“It adds the fun to rehab and recovery after suffering a stroke and the life changes that go with it. But beyond that, GripAble really cares about the holistic health of stroke survivors and through my role as ambassador, hopes to inspire motivation in every stroke survivor – especially as we know dopamine levels, which control our motivation levels, can be affected after stroke – and encourage more and more peer mentoring.”
Kate adds: “As well as collaborating with the GripAble team, therapists, healthcare professionals and the stroke survivors too, we will be launching a number of initiatives to enhance physical, emotional and mental support. This ‘Stroke Buddy’ campaign will include regular live coaching webchats, where I will talk openly about the wider issues that affect stroke survivors, live Twitter chats, social media groups and forums, and a Stroke Buddy Group for peer mentoring and support from other stroke survivors.
“I know from my own rehabilitation and recovery following a catastrophic stroke, just how hard it is to remain motivated and focussed, and how critical the relationship between survivors and their therapists is to achieving the very best outcomes, so that stroke survivors can be the best versions of themselves, emotionally, mentally and of course physically.
“I am driven by the desire to inform, motivate, signpost and connect stroke survivors to enable them to be the best they can be, and by collaborating with GripAble as its ambassador, I can take this commitment to a whole new level, especially for people affected by weakened arms and hands following a stroke.”
GripAble has been developed over the last seven years in consultation with thousands of occupational and physical therapists and patients across multiple clinical conditions and leading academic institutions including Imperial College London and Imperial Healthcare NHS Trust.
Dr Paul Rinne, CEO and co-founder of GripAble, says: “Kate and GripAble’s aims are totally aligned. There is an obvious connection and shared objectives, visions and goals. Kate’s passion, energy, resilience and drive are compelling and irresistible, and we are motivated by the same thing – helping people to be the best that they can be.
“In particular, our mutual vision is to make rehab tech accessible and fun for the patients and their therapists too. We are keen to learn as much as we can from Kate to feed our hunger for insights and understanding of the emotional and physical challenges of stroke recovery. Kate is very goal-centred, which matches the tech and focus of GripAble, along with our commitment to tracking and recognising even the tiniest progress.
“Studies show that the more repetition and strength training a person performs, the greater their chance of restoring movement, and ultimately their independence,” adds Paul. “Physical rehabilitation is critical for patients to restore quality of life after stroke and other neurological, orthopaedic and paediatric conditions.
“In some senses, the challenge is as much mental as physical. Keeping up with a rehabilitation regime, no matter how willing you are, is a grind. It can seem as though all of that sweat and the understandable tears, may leave you thinking that it’s all for nothing and that the future is bleak. But GripAble really does have the potential to help stroke survivors – and also people living with other neurological conditions – to monitor how even the smallest steps are all contributing to their journey of restored ability.”
Kate adds: “Physical rehabilitation is critical for people to restore quality of life after suffering a stroke. GripAble is at the cutting edge of occupational and physical therapy. A smart mobile assessment and training device that connects to an app, it supports people with loss of movement in their arms and hands to train movement and grip strength that are critical to restoring their independence. At the current time, it also supports therapists who need to engage their patients in rehab remotely.”
GripAble has launched to early adopters, with a predominantly UK-based distribution, with GripAble devices currently in use in both NHS and private hospitals, clinics, and homes.
“GripAble has the unique opportunity to be used by every single person coming into contact with the healthcare system globally, measuring and recording strength from early childhood until end of life care,” adds Paul. “This gives us the ability to not only change the face of physical rehabilitation, but also of healthcare in general.”
Vital rehab spaces being used for storage in Scotland
Patients are missing out on physiotherapy and rehabilitation services because vital spaces are being de-prioritised by Scottish health boards, the Chartered Society of Physiotherapy has warned.
Reports from across Scotland reveal that rehabilitation facilities are being used for storage space and meeting rooms while the pace of re-opening and re-starting services remains slow.
During this second wave of the pandemic, physiotherapy will be critical to Covid-19 rehabilitation. Physiotherapists assist Covid and “Long Covid” patients recovering from fatigue, ongoing respiratory problems, deconditioning and poor mental health. In addition, the closure of rehabilitation services means that many non-Covid patients with long-term conditions have deteriorated, and now require more rehabilitation, alongside the ongoing needs of cardiac, stroke and respiratory referrals in the community.
Despite this huge need, rehabilitation spaces in various health boards are being moved out without relocation plans and gymnasiums are being requisitioned for other purposes such as storage and meeting rooms. In a recent survey, 47% of CSP members in Scotland said reported that a loss of rehabilitation space is why services have been unable to resume. Relocation and redesign is taking place without risk assessments, with poor planning and a lack of consultation.
Kenryck Lloyd-Jones, CSP Public Affairs and Policy Manager for Scotland, said: “The reports we are receiving from across Scotland are deeply concerning. It seems that not only are physiotherapy and rehabilitation services being slow to restart, they are being moved without relocation plans, downgraded or undervalued. We recognise the challenges in health settings and the need to re-organise, but it is essential that rehabilitation services are prioritised.
“Changes require proper consultation, risk assessment and planning. It is critical that the rehabilitation needs of people are not forgotten.”
A number of patient groups are also warning of a lack of investment and undervaluing of rehabilitation. While some rehabilitation is taking place virtually, physiotherapists still need enough space and equipment to run sessions effectively.
The CSP wrote to all regional health boards last month to urge them to prioritise rehabilitation as services are re-started, stating: “The CSP is strongly advising action to address this lag in progress, not least because the post-Covid rehabilitation needs of Scotland’s communities are pressing. Local authorities and Integrated Joint Boards also need to ensure that where rehabilitation is required in community settings, that health professionals can resume services.
“With the publication of the Scottish government’s rehabilitation framework, the emphasis must return to early intervention, reducing hospital admission, early supported discharge and improved outcomes. Musculoskeletal and community rehabilitation services are essential to this.”
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