Access to medical cannabis is just “the tip of the iceberg” for families

Parents and campaigners say it’s time to talk about the lack of support offered to families caring for disabled and chronically ill children.

When Hannah Deacon was told her son, Alfie, would likely not survive the number of seizures he was having, she was only offered one session of counselling through the NHS.

Matt Hughes and his wife were offered no NHS mental health support when they were handed a leaflet that said a child with infantile spasms – as their son Charlie had just been diagnosed with – may not live past the age of 10.

Speaking to Cannabis Health, Matt and Hannah opened up about feeling “unseen” as parent carers in society, and the wider social impact of denying patients access to effective cannabis medicines.

“Access to effective medicine is probably just the tip of the iceberg,” said Hannah.

“It’s not just about that, it is about everything else that impacts your life when you have a disabled child. There is so much more that our society and our government could do to ease that burden.”

When Alfie became ill at just eight months old, spending four months in hospital, Hannah assumed a “package of care” would kick in.

“You’d like to think that if you have a disabled child, that the state will take care of you. The fact of the matter is that they don’t,” she continued.

“When our son got very poorly, I assumed that there would be a package of care when we came home; that we’d have mental health support and a social worker – that didn’t happen. I don’t think people realise that the support is not there and that’s something that we need to be talking about.”

Hannah added: “The only reason I survived is my family who helped us get through those very, very dark days.”

Watch the full interview with Hannah and Matt here 

The mental health impact

Both Hannah and Matt live with PTSD from the trauma of seeing their children suffer and the impact that a condition such as treatment-resistant epilepsy has.

Now that Alfie and Charlie’s conditions are relatively stable, thanks to prescribed cannabis, their parents have been able to begin the process of trying to heal. But most of the support they rely on has had to be accessed privately, they say.

“Every parent I’ve spoken to has a huge amount of trauma, anxiety and PTSD,” said Matt, who co-founded the organisation Medcan Support with Hannah to help other families.

“You’re trying to keep your head above water and are completely focused on doing everything you can to get your child better, so you don’t actually deal with the trauma and your mental health [at the time]. It’s only now that Charlie is beginning to be well that your mind starts to focus on repairing.

He added: “But there’s constant concerns and worries. We’re always thinking about Charlie’s future, about what’s going to happen to him, having to go into care when he’s older. “

Matt and Ali Hughes

Hannah received six months of counselling through the NHS while she was pregnant with her second child, but was discharged after the birth. 

“Other than that, the only other counselling I’ve had was paid for by my mum, which I was very lucky to have,” she said.

“I was in a fight or flight situation for six years and I still live with anxiety. 

“Over the last few years of Alfie being seizure-free, I have tried to process it. I’ve done hypnotherapy, acupuncture, and a lot of natural therapies that have really helped me in recovering from trauma. But the fact is, it’s not given by the public purse and I think that it should be.

“It shouldn’t be up to the parents and the family to try to survive – because that’s all we did, survive.”

The financial burden

It isn’t only mental health support that families need. The financial impact of caring for a disabled child – let alone funding a private prescription for the treatment they need – takes its toll. 

As a full time carer for Alfie for six years, Hannah received £64 a week in carer’s allowance – an amount which was difficult to live on then, let alone now.

Hannah Deacon and her son Alfie Dingley

And not only is Matt forced to rely on the private sector for Charlie’s medical cannabis prescription, but also for nursery care, respite, specialist equipment, speech therapy and other vital services to help with his development. 

“The cost of having to fund the private prescription really impacts being able to do anything else,” he said.

“This is why we keep banging on about NHS access, for families like ours there is so much more that we have to pay for out of our own pockets, or fundraise or fight for, that never gets spoken about.

“The very basics in care just aren’t there. For Charlie to go into nursery for half a day to allow my wife and I to spend five minutes together, it costs £169. It’s not just his cannabis that we’re getting privately, it’s all these other important things for his life and development.”

Being a part of society

Cannabis is not the sole solution, but NHS access would not only ease some of the financial burden on families – and indeed on the healthcare system itself –  it may mean that children become well enough to return to school or nursery, allowing parents to return to work and engage with society again.

Since Alfie has been seizure-free and doing well at school Hannah has been able to return to working full-time and forging a career and identity for herself, something which comes with a myriad of benefits.

“When I was a full time carer to my son I felt completely unseen, no one talks about parent carers,” she said.

“I never went out. I never did anything other than go to hospital with him and watch him suffer. I wanted nothing more than to be able to work and to be someone in society.”

Hannah, with partner Drew, Alfie and youngest daughter, Annie

While Hannah and Matt describe feeling isolated and unseen, they are not alone.

Figures from 2020 show those who are a parent or guardian caring for someone under the age of 18 make up a quarter of unpaid carers, of which there are thought to be around 13 million in the UK.

Only around 80 children currently have private prescriptions for medical cannabis in the UK, while thousands more could likely be helped by the treatment but may be unaware or unable to access it due to financial or other reasons. 

Hannah believes the government should be addressing the issue of access to medical cannabis, not just for the benefits it could bring to thousands of patients, but also in terms of the harm that not having access does to society and the wider economy. 

“This is not just about making cannabis medicines available to children like Alfie and Charlie, it’s about the social issue of not allowing it to be available,” she said.

“We’re stopping thousands of parents from working and integrating in society or spending their well-earned money in their local community.

“Why are we as parents, not being advocated for by our representatives in parliament?”

Charlie’s condition has improved since being prescribed cannabis

Being a part of society and having time for yourself and your partner – however fleeting – can be the difference between surviving and not, when you’re facing the worst imaginable, say Matt and Hannah.

“Around 50 per cent of relationships break down when you have a disabled child,” said Matt.

“It’s really difficult to spend time on your relationship whilst you’re trying to deal with your own personal mental health issues and support one another.”

Through Medcan Support, they hope to raise funds to offer financial support to families whether that’s for mental health care, respite for their child, a short break or a piece of specialist equipment.

“We just want to be able to support families with an extra little bit of money, to give them a few hours just to pop to the pub or do a little bit of shopping together, to do what they used to do before and feel like themselves again,” he added.

“Those little moments, they mean the world.”

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