Family of teenager with aggressive cancer turned to illegal drug as last resort

Jordan Lotter was an otherwise fit and healthy 18-year-old when he went to his GP in January 2015 with a pain in his side. 

Just 15 months later, Jordan died at the Royal Marsden Hospital in London.

What he’d thought was a sports injury, or muscle strain from his bricklaying course, turned out to be a an aggressive cancer in his abdomen.

In the final dreadful months of his life, during which Jordan endured debilitating chemotherapy and an operation to remove a tumour blocking his intestines, his mother Frances and father Charles fought desperately to save him, at one point raising money to send him to Germany for a new form of immunotherapy treatment.

Jordan Lotter went to his GP in January 2015 with a pain in his side. Just 15 months later, Jordan died at the Royal Marsden Hospital in London

Nothing worked and throughout it all ‘he was in terrible pain’, says Frances. 

Jordan was given morphine, but needed such high doses that ‘it slowed his whole body down, respiratory system, bowel, everything — and he was so drugged up he was barely aware of his surroundings, it took him out of the game.’

Unable to watch her son suffering, Frances stumbled upon a solution doctors could not consider — cannabis, which she began giving him as drops of oil (administered orally with a syringe like a child’s medicine) last May and which he took until his death on April 4 this year.

The effects, she says, were ‘instantaneous and amazing… it did wonders for his pain, with none of the side-effects of the morphine, which made him sick and gave him horrible dreams.’ 

Jordan fell into a terrible depression when he was told he was going to die, ‘but the cannabis also helped with that. It even helped with his appetite when he was having chemotherapy.’

Frances learned about the possible medical benefits of cannabis from ‘a friend of a friend’, whose elderly mother had been diagnosed with terminal cancer of the abdominal lining and whose symptoms, including pain which morphine hadn’t touched, disappeared almost overnight after she started taking the drug.

Cannabis is a Schedule 1, Class B drug, which means if Frances had been caught giving cannabis to her son, she could have faced up to 14 years in prison for possession and supply.

Until Jordan was diagnosed with terminal cancer, Frances, a housewife, had never dreamed of breaking the law. 

Jordan Lotter (right) at the age of five with his father Charles (middle) and brother Oliver (left) 

But for the last year of Jordan’s life, she risked arrest and prosecution to ease her son’s excruciating pain as he lay dying.

Frances didn’t care. ‘I was fighting for Jordan’s quality of life,’ she told Good Health. Whatever the risks, ‘I would do it again’.

Now a highly controversial report, published today by the All Party Parliamentary Group (APPG) for Drug Policy Reform, is calling on the government to legalise cannabis for this kind of medical use, by moving it to Schedule 4, ending the criminalisation of what the APPG says could be as many as a million Britons like Frances.

This, they say, would bring the UK in line with 11 other European countries, including Germany, Italy, Austria, Belgium and the Netherlands, as well as 24 states in the U.S. as well as Canada, Israel and many Latin American countries.

The report is based on what the group calls ‘the most extensive review of evidence in the literature in modern times’. 

It says it’s now beyond dispute that ‘medicinal cannabis works for a range of conditions’ and that its continued treatment in UK law as ‘a dangerous drug with no medicinal value… is irrational and incoherent’.

Jordan Lotter (right), pictured with his brothers Max (middle) and Oliver (left) on a family holiday in Cornwall

The APPG wants the government to follow the German model for legalisation which, when in force next year, will include a list of conditions for which cannabis is approved as a prescription drug, available at any pharmacy.

Frank Field, the Labour MP for Birkenhead and a member of the APPG, says it is ‘an outrage that people trying to alleviate the pain of their children dying of cancer are being treated as criminals’.

Baroness Meacher, co-chair of the APPG, told Good Health it was ‘unacceptable that very sick people who have found all sorts of prescribed medications not helpful and who to turn to cannabis for relief risk arrest’.

Few could fail to be moved by Frances’ experience, or those of countless others like her. 

But as powerful as such testimonies are, any call to legalise cannabis, even for medical use alone, will have to overcome deep-seated concerns — among politicians, the public and medics alike — that the drug is addictive, that it can act as a ‘gateway’ to more serious drugs, and the potential risk of the misuse of such prescriptions.

Jordan, aged four, on a family holiday in Norfolk. He died of cancer this year, at the age of 19

There is also the troubling link between cannabis and psychotic episodes. Too often, the drug has been seen to play a part in horror stories.

The jury that in April found 23-year-old Kathryn Smith guilty of stamping to death her 21-month-old daughter, Ayeeshia, heard that she and her partner were regular cannabis users.

At the trial in March of Clayton Williams, convicted of manslaughter and jailed after running down PC Dave Phillips, it was revealed that the 19-year-old car thief from Manchester had used cannabis since he was six, spent £100 a day on his habit and had smoked a joint shortly before callously mowing down the father-of-two.

But Baroness Meacher insists none of this should be allowed to distract from the wider good that cannabis can do when it is used medicinally.

As part of its report, the APPG surveyed cannabis users aged 16 to 75, who took the drug to manage a range of conditions, including depression (30 per cent of respondents), anxiety (26 per cent), chronic and severe pain (24 per cent), insomnia (21 per cent) and arthritis (12 per cent).

The majority said they had turned to cannabis only after struggling for months or years with significant side-effects from conventional medicines, including painkillers, antidepressants, sedatives, antipsychotics, steroids and anticonvulsants.

Many patients who use medicinal cannabis said they turned to the drug after struggling for months or years with significant side-effects from conventional medicines

Only ‘a tiny’ 1.4 per cent thought these prescribed medicines had been completely effective, and 41.9 per cent said they had either not helped or had even made their situation worse. 

Almost 90 per cent, however, said cannabis had improved their condition with no side-effects.

At the heart of the APPG’s call for herbal cannabis to be legalised for medical use is a 169-page dossier of scientific evidence supporting its case. 

The report’s authors — Professor Mike Barnes, a neurologist and clinical director at Christchurch Group (a private company with eight residential centres across the Midlands treating patients with conditions including brain injuries and stroke) and his daughter, Jennifer Barnes, a clinical psychologist at Tyne Wear NHS Foundation Trust — reviewed the findings of 20,000 studies published in every decade since the Sixties.

They concluded there is ‘good evidence’ for the use of cannabis in the management of chronic pain, nausea and vomiting, particularly in the context of chemotherapy, and in the management of anxiety.

They found ‘moderate’ support for the use of cannabis to treat sleep disorders, loss of appetite caused by chemotherapy, fibromyalgia (a chronic condition that causes body-wide pain), post-traumatic stress disorder and some symptoms of Parkinson’s disease, such as tremor, rigidity and slowness of movement.

While he was still healthy, Jordan was fit and healthy, and attended several charity runs. Here, he is pictured with his brother Max (left)

Some ‘limited evidence’ was found for the use of cannabis in other conditions, including agitation in dementia, epilepsy and Tourette’s syndrome.

Professor Barnes told Good Health that, based on the evidence, continuing to criminalise those who rely upon cannabis for medical use would be ‘a disgrace… it’s time to change this awful situation and make a decent drug available for decent people with chronic conditions’.

But as exhaustive as Professor Barnes’ review of the evidence appears to be — and experts are yet to analyse his findings — nowhere in his report does he declare his association with CLEAR, a campaign group seeking to end ‘the prohibition of cannabis’ for all users, medical and recreational.

Professor Barnes, a former president of the British Society of Rehabilitation Medicine and a founder trustee of the MS Trust, is described on CLEAR’s website as the organisation’s medical and scientific adviser.

He told Good Health he was asked ‘about six weeks ago if I would advise CLEAR on their campaign to legalise cannabis for medical purposes. 

‘I was happy to do so. I was not asked to support their broader campaign on recreational usage and I do not support general legalisation.’

To avoid confusion, he has told us he ‘will resign from CLEAR ’. 

Jordan (left) with his brothers Max (top) and Oliver (bottom). For the last year of Jordan’s life, his mother risked arrest and prosecution to ease her son’s excruciating pain as he lay dying

His report, he added, is ‘balanced and the science is unarguable… I set the evidence threshold very high so that no one can sensibly refute the conclusions.’

Nevertheless, his connection with CLEAR will do nothing to ease concerns that legalising cannabis for medical use could lead to decriminalising it for recreational use. 

Of the 11 peers and four MPs who took part in the APPG hearings that led to the report only one — Lord Norton — is Conservative.

The National Drug Prevention Alliance, which opposes relaxing UK drug laws, dismissed the APPG report as ‘without merit’. 

David Raynes, a former assistant chief investigations officer with HM Customs and political affairs director of the alliance, said it was ‘pushed almost entirely by a few parliamentarians and users who have failed to get legalisation for recreational use any other way.’

Professor Barnes told Good Health that ‘many will be surprised about the strength of evidence for the use of cannabis’ which was ‘overwhelming for use in chronic pain’. 

But expert organisations contacted by Good Health expressed surprise about the report itself.

Jordan Lotter (right), aged 18, with his father Charles. His mother Frances says the effects cannabis had on his pain were ‘instantaneous and amazing’

‘It is interesting that the authors feel there is sufficient evidence to justify recommendation of use of cannabis formulations for pain,’ said Roger Knaggs, a spokesman for the British Pain Society.

‘Most pain clinicians would say there is insufficient evidence to recommend and balance with the risks of misuse.’

Professor Knaggs, an associate professor in clinical pharmacy practice at the University of Nottingham, said there were ‘significant side-effects and potential harms in the use of cannabis which appear to have been overlooked’.

The Barnes report is also in stark contrast to the findings of a study published in the journal Addiction in 2014, which found regular cannabis users ‘double their risks of experiencing psychotic symptoms and disorders’.

Professor Wayne Hall, of the National Addiction Centre at King’s College London, reviewed all the scientific evidence on the effects of cannabis use published between 1993 and 2013 and concluded there had been ‘consistent associations found between regular (especially daily) cannabis use and adverse health and psychosocial outcomes’. 

He also found that one in ten of all regular cannabis users became dependent on the drug, rising to one in six among those who started using in adolescence.

Before he was diagnosed, Jordan thought the pain was due to a a sports injury, or muscle strain from his bricklaying course

The Royal College of Psychiatrists said that while it was ‘in favour of more research to explore the use of cannabis products as medicines’, Professor Colin Drummond, chair of the college’s addictions faculty, told Good Health it was ‘important to note that cannabis carries significant mental health risks for some individuals. Its use increases the risk of developing psychosis, depression and anxiety’.

The question must be: why not develop prescription medicines based on cannabis? In fact, there are already two on the market.

Nabilone, a synthetic cannabis-type drug marketed in the UK as Cesamet, was licensed in 1982 as a hospital-only treatment for nausea and vomiting caused by chemotherapy where conventional medication hadn’t worked.

In 2010 Sativex, developed by a UK company, became the first medicine based on cannabis for use in the UK. GW Pharmaceuticals has been licensed by the Home Office since 1998 to grow its own cannabis plants, which it does in ‘highly secure computer-controlled glasshouses’.

The peppermint-flavoured mouth spray can only be prescribed for the treatment for spasticity, a loss of muscle control experienced by MS patients. However, it is expensive — a 10ml vial, which lasts 22 days, costs £125 — and is rarely prescribed.

‘We are keen that Sativex is made routinely available on the NHS throughout the UK for its licensed indication,’ the MS Society told Good Health.

Because of the strict terms of their licences, neither Sativex nor Nabilone can be prescribed for a different purpose. 

To widen their licences would involve new trials and new regulatory approval, which would be extremely costly.

Nevertheless, GW Pharmaceuticals has trials under way in the U.S. and Europe with the aim of having Sativex approved for the treatment of the ‘chronic, unremitting pain in deep tissues that results from cancer’.

The existence of these two drugs demonstrates the government accepts cannabis has medicinal value, says the APPG. 

Duringthe final dreadful months of his life, Jordan endured debilitating chemotherapy and an operation to remove a tumour blocking his intestines

This, says its report, ‘seems irrational and contrary to the government’s scheduling decision’ over herbal cannabis which, if legalised for medical use, would bring the benefits of the drug to hundreds of thousands of people at a fraction of the cost to the NHS.’

The report recommends that herbal cannabis be grown by licensed producers in the UK and made available on NHS prescription for specified conditions.

In the Netherlands, the Office of Medicinal Cannabis — part of the ministry of health — oversees the production of cannabis for medicinal and scientific purposes by licensed growers, and has a monopoly on supplying medicinal cannabis to pharmacies. 

It also exports cannabis for medicinal use to Italy, Germany, Finland, Canada and the Czech Republic.

Bedrocan, the company that has supplied the Dutch ministry since 2003, produces six medicinal ‘blends’ of cannabis, each with a different proportion of the chemicals most important medically — tetrahydrocannabinol (THC) and cannabidiol (CBD).

These stimulate ‘receptor’ cells throughout the nervous system controlling appetite, pain and mood. 

The correct proportion of chemicals is critical. With illegal cannabis there is no way of knowing just what it contains and this, says the APPG, is another good reason for the production and prescription of medical-grade cannabis to be legalised and regulated.

Joirdan’s parents fought desperately to save him, at one point raising money to send him to Germany for a new form of immunotherapy treatment

Yet many will remain deeply concerned about the possibility of addiction and not least the very real dangers of THC, the chemical in cannabis which has been linked to psychosis and schizophrenia. 

Although Professor Barnes suggests the risk of cannabis causing these is ‘very low’, there is ‘probably a link in those who start using cannabis at an early age and also if the individual has a genetic predisposition to psychosis… we recommend caution with regard to the prescription of cannabis for such individuals.’

It is far from clear how these at-risk individuals would be identified.

But for Frances Lotter and the many others tackling short-term terminal illness, these are moot points. 

As a result of the year she spent in and out of hospital with Jordan, ‘I now know a lot of mothers with children with cancer for whom it’s an essential part of their treatment plan.

‘They are having to pay extortionate prices — people know you are vulnerable that you’ll do anything to help your child or your partner and they’re exploiting that. If it was managed properly and legalised that wouldn’t happen.’