Alberto Costa (South Leicestershire) (Con) I beg to move, That this
House has considered medical cannabis under prescription for
children with epilepsy. It is a pleasure to serve under your
chairmanship, Ms Bardell, and I am very grateful to open this
debate on an issue that affects many of our constituents. I do not
propose to speak for long, because I can see that quite a large
number of colleagues are in the Chamber and would like to speak as
well. If they have...Request free trial
(South Leicestershire)
(Con)
I beg to move,
That this House has considered medical cannabis under
prescription for children with epilepsy.
It is a pleasure to serve under your chairmanship, Ms Bardell,
and I am very grateful to open this debate on an issue that
affects many of our constituents. I do not propose to speak for
long, because I can see that quite a large number of colleagues
are in the Chamber and would like to speak as well. If they have
not already done so, I invite them to inform the Chair that they
wish to speak.
I wish to mention my constituents Maya, who is nine years old,
and Evelina, who is just four. Maya and Evelina suffer from rare
forms of epilepsy and rely on medical cannabis to improve their
quality of life. Their families are currently having to pay up to
£2,000 a month for private prescriptions of medical cannabis, as
they are unable to access that medicine on the NHS. Their
families are also having to go to unbelievable lengths to raise
money, something that has been made more difficult during the
pandemic as there has been less opportunity to fundraise. Maya’s
family have set up a Facebook page called “Mercy for Maya”, where
her mum Samantha runs monthly fundraisers and raffles to help
with the enormous monthly costs. My constituents should not have
to do this for something that is legal on the NHS.
(Edinburgh West) (LD)
The picture that the hon. Member paints is one that I and many
other hon. Members are familiar with, because we also have
constituents going through the same ridiculous hoops to get a
legally available medicine. Is he aware of any other medication
in this country for which that has ever been the case—it has been
legal and available, but people have had to raise the money for
it themselves in this way?
I am not sure, but I doubt that our constituents would have to
put their hands in their pockets to the tune of £2,000 a month to
pay for any other medication that was extremely important for
their severely ill children. My constituents, and indeed all
Members’ constituents who have children in this situation, should
not have to pay for this medication themselves.
Medical cannabis has had lots of benefits for Maya, including
preventing her from having prolonged seizures, which has meant
less time in hospital. Medical cannabis has also improved her
alertness and engagement. She used to spend a lot of time asleep
during the day, but she is now able to attend school, which she
very much enjoys.
Both I and colleagues have lobbied the Government tirelessly to
widen access to this life-changing and life-saving treatment. I
am sure that I speak for many Members here today in expressing
delight that medical cannabis was made legal in specialist cases
in November 2018. This week marks three years since that law
change.
I welcome the new Minister to her place and the good progress
that the Government have made on widening access to medical
cannabis. I am also grateful to her for agreeing to meet me, as
co-chair of the all-party parliamentary group for access to
medical cannabis under prescription, along with my colleague the
hon. Member for Gower (), later this month. I
look forward to discussing the issues in greater detail with
her.
You may be interested to learn, Ms Bardell, that since the very
welcome law change three years ago, which should have improved
the lives of children who suffer with rare and intractable forms
of epilepsy, only three prescriptions have been issued on the
NHS—only three prescriptions. At this point, I would like to
clarify that we are talking about whole-plant extract. This type
of medical cannabis, containing CBD and THC—cannabidiol and
tetrahydrocannabinol—together with many other active ingredients,
has been life transforming for a small cohort of families and
their children. It is vital that that point is understood, as
there have been several hundred prescriptions for a fully
licensed paediatric drug known as Epidiolex, but that is
primarily CBD-only. There is an acknowledgement that that drug
has a role to play, but it was not the subject of the appeals
that were so eloquently and passionately made by the families
concerned when they visited Parliament at the start of this
week.
Access to medical cannabis was legalised after high-profile
campaigning by me and other Members across the House, who are
here today, and the hard work of the group End Our Pain. It and
other campaigners, along with some of my colleagues, worked with
the then six-year-old Alfie Dingley, who also suffers from rare,
intractable epilepsy, to help him secure access to medical
cannabis. In 2018, after intensive campaigning, Alfie was granted
the first ever long-term licence for the type of medical cannabis
that is life transforming. Medical cannabis subsequently became
legalised in specialist cases on 1 November 2018. Since Alfie
secured the prescription, his transformation has been
significant. He has gone from suffering up to 150
life-threatening seizures a day to recently celebrating being 500
days seizure free. The change in health and quality of life for
Alfie is nothing short of transformative, and that transformation
has been evident in many others, too.
I am very grateful to the Secretary of State for Health and
Social Care, who in 2018 was the Home Secretary who granted the
licence for medical cannabis to Alfie Dingley. I know that my
right hon. Friend cares deeply about this issue. Now that he is
Secretary of State for Health, I urge him to consider the
recommendations that I am mentioning today on what further action
could be taken to help children like my constituents to access
medical cannabis on the NHS. The law change has been a change in
legislation, but not in practice. That has been reflected in the
number of NHS prescriptions that have been issued. My
constituents and many others were greatly reassured by the steps
that this Government took to legalise these treatments in 2018,
but they are understandably dismayed that actions have not
followed words in this case.
There are a few reasons for this blockage on NHS prescriptions.
At the same time that the law changed, a number of bodies issued
guidance on how and when medical cannabis should be prescribed.
Those bodies included the British Paediatric Neurology
Association, the General Medical Council, the National Institute
for Health and Care Excellence and the Royal College of
Physicians, but let us be clear: nothing—absolutely nothing—in
any of the guidance states that it is wrong or not allowed to
prescribe this medicine, either privately or on the NHS.
However, I am advised by the families and advocates on this issue
that the guidance paints a somewhat confusing picture. In my
capacity as co-chair of the APPG, I have attended a number of
meetings with senior NHS leaders. In those meetings, they tell me
that if an NHS consultant wishes to prescribe medical cannabis,
they are able to do so. The British Paediatric Neurology
Association does not currently support the use of whole-plant
medicinal cannabis, which includes the THC ingredient, and has
published guidance stating that only neurologists should be
allowed to prescribe cannabinoids containing CBD. That guidance
has been criticised for being overly restrictive.
The high level of caution in the guidance issued is likely to
have played its part in preventing the prescribing of those
products and making NHS trusts unwilling to provide funding.
Currently, there are only three paediatricians in Britain who
prescribe the whole-plant oil to children with drug-resistant
epilepsy, and one of them is to retire imminently, meaning that
families are at risk of losing their prescriptions.
A few months ago we had a breakthrough, as NICE issued
clarification of its guidance relating to the use of medical
cannabis for drug-resistant paediatric epilepsy. It has now made
it clear that clinicians can prescribe medicinal cannabis in
appropriate cases. However, even since the clarification of the
guidance, the hesitancy among the medical profession remains.
I am aware that this issue continues to receive a high degree of
media, public and political attention, and I am concerned that
some of those involved—perhaps some of the medical professional
bodies such as the BPNA—may be experiencing a temptation to
entrench and dig in. If that is the case, I make a plea to them
and their medical professional colleagues to reject that
temptation and instead to reach out to work with the Department
of Health and Social Care, the Minister and her colleagues, the
families and interested politicians to find a way forward to help
these vulnerable families and their children.
I also strongly encourage the Government to ensure better
education for paediatric neurologists on whole-plant extract
medical cannabis and its benefits for children with
drug-resistant epilepsy. I am aware that the previous Secretary
of State for Health and Social Care tasked the NHS with
undertaking a review of the blockage on NHS prescriptions. The
review reported in August 2019 and made two main recommendations:
first, that an expert panel be set up to advise on the
prescription of medical cannabis in cases of paediatric epilepsy;
and secondly, that a trial should be set up to inform the
evidence base on safety and efficacy, and to act as a way of
getting these families access to the medicine for free.
The families and campaigners have told me that those
recommendations offered them great hope and a way forward.
However, things have not worked out as the families hoped. Yes,
the expert panel was set up; it is called RESCAS—the refractory
epilepsy specialist clinical advisory service—and its members are
indeed experts in paediatric epilepsy, but as far as the families
can see they are not experts in the way that whole-plant extract
has worked both here in the UK and overseas.
Imagine, then, the enormous disappointment when one of the very
first cases considered was turned down for medical cannabis. The
young boy in question is experiencing a life transformation
similar in positive impact to that which Alfie is experiencing.
The panel is not working. I know the Minister cares deeply about
this matter. I hope she will agree that the make-up and terms of
the panel are in need of urgent review so that it includes
expertise not just in the condition itself, but in the medicine
too.
The other main recommendation of the August 2019 review was the
establishment of trials. I understand that the Government’s
position is that there needs to be more research in the area
before prescriptions can be available more freely. The proposed
trial was to be observational, which meant the children could
continue on the medicine and their condition be evaluated by
medical professionals. It soon became clear last year that plans
for the observational trial had been dropped and replaced with a
randomised control trial. RCTs are not appropriate in this case,
as I am sure hon. Members agree, as they require some of the
cohort to be taken off the medicine and given a placebo.
That is simply not possible, and we have to ask ourselves why
anyone would take their children off a medicine that was already
working for them and improving their quality of life. RCTs can
also be incredibly costly and take years to complete. That is
time that my constituents and others do not have. I therefore
suggest that the Government consider conducting an observational
trial or an alternative study as a means of enabling the children
to have continued access to medical cannabis at no cost. That
would be possible for the Secretary of State, and the
Under-Secretary of State for Health and Social Care, my hon.
Friend the Member for Lewes (), here today, to commission
under the National Health Service Act 2006.
(Birmingham, Hall Green)
(Lab)
The cost of having medicinal cannabis for children is
astronomical, at between £800 and £2,000, and that is for those
who can afford it. The very children who need the medicine to
improve the quality of their lives where it has been proven to be
effective and who cannot afford it cannot be put on the scrapheap
to further delay. Does the hon. Gentleman agree?
I think it is imperative that we work cross party and we
encourage, cajole and push the Government to do the right thing.
The right thing is what? While acknowledging that the Ministers
have these powers, I understand that there are concerns about
whether such action might lead to unintended consequences in the
form of legal challenge relating to other drugs. I am a lawyer; I
understand that. I used to work in government and defend the
Government from judicial review. I understand.
However, I believe that any such concerns and risks could be
mitigated. I also suggest in the meantime that the Government use
the discretionary fund that they have at their disposal to cover
the cost of the private prescriptions. There are a small number
of children and families across the country in this desperate
financial situation. The Government can intervene financially to
reduce the burden every month, so that families such as my
constituents Maya and Evelina do not have to rely on the
uncertainty of fundraising. That is my favoured option, and I
urge my hon. Friend the Minister to access that fund.
During the pandemic, Maya had to be rushed to A&E a few times
due to her condition. Surely these children needing to go to
hospital to have urgent medical treatment is more costly to the
NHS than providing them with the prescription they need.
Therefore, I suggest, only as an interim measure—I plead—that the
Government consider covering the costs of the private
prescriptions for the most vulnerable children in our country
suffering from severe epilepsy who need this medication, until
the Government find a solution with the bodies and particularly
the medical profession.
In conclusion, I urge my colleagues in Government to consider the
recommendations that I and other colleagues across the House have
made and are making here today, as well as listening to the
families affected. While I appreciate the good work that the
Government have done on this issue, they can and should go
further. I and many colleagues across the House will continue to
champion this matter: better access to medicinal cannabis on the
NHS for my constituents, all the constituents affected across our
country and all the children suffering from this awful illness,
so that they get the drugs necessary, free at the point of need
on the NHS.
(in the Chair)
Before I call speakers, I want to acknowledge those who are with
us in the Chamber today and those who are watching. I also
acknowledge the importance of this subject. Because it is such an
important subject and I want to call the Front Bench by 5.34 pm,
with the Labour and Scottish National party spokespersons having
five minutes each, I will impose an initial time limit of four
minutes to ensure that every Member has the opportunity to
represent this very important issue.
17:15:00
(Middlesbrough) (Lab)
It is a pleasure to see you in the Chair this afternoon, Ms
Bardell. I pay tribute to the hon. Member for South
Leicestershire () for securing this debate,
for his articulate and forensic analysis, and for the coherent
account we have heard from him.
It is three years since we were able to celebrate the change in
the law that should have helped the children and families we have
been hearing from this week. Sadly, after three long years, they
are no further forward. As we have heard, since 2018, only three
NHS prescriptions have been issued for the type of medical
cannabis that was shown to be so life-transforming for the likes
of the then six-year-old Alfie Dingley, whom the hon. Member
spoke of earlier. It was Alfie and his mum who were at the
forefront of this campaign. They and many others achieved the
change in the law that they had all worked so hard for.
Heartbreakingly, while the law has changed, it has not been
properly implemented and utilised for those crying out for help.
Families have been left at breaking point emotionally and
financially, having to find up to £2,000 a month to pay privately
for this medicine. I cannot begin to imagine how on earth these
loving parents cope with such massive monthly costs— £2,000 a
month is the equivalent of an additional and very substantial
mortgage. In fact, it would dwarf many people’s mortgage
payments. Not even we MPs on over £80,000 a year could cope with
that. How on earth can we expect those families to withstand such
huge costs, simply trying to keep their children alive and free
from the ravages of seizures by accessing a known and proven
prescriptive solution?
That these families cannot secure NHS prescriptions for their
children, when it has been proved beyond any doubt that cannabis
is efficacious, is a monumental shame. The campaign group that
the hon. Member mentioned, End Our Pain, rightly said that this
saga has dragged on for far too long. Those families have
petitioned, marched and campaigned with such dignity. They should
not and must not be ignored.
The new Secretary of State for Health and Social Care was pivotal
in the change in law when he was Home Secretary. I urge him and
his Department to give effect to that change and remove all
barriers to getting medical cannabis to those patients. The
campaigning families will do whatever it takes to help Government
remove any barriers to doing the right thing and give them and
their loved ones access to medical cannabis as they would any
other therapeutic drug.
We lost our 16-year-old son to epilepsy over 15 years ago. I do
not know whether medical cannabis would have helped him, had we
even known about it then, but I will do everything I can to
assist these families in their determination to get the
medication that their children need. The memory of seeing our
beloved Rory locked in status; to hear my wife scream for me to
get an ambulance; to see the paramedics come upstairs to his
bedroom; to hear the consultant in the hospital tell us that we
better call a priest; and to hold my child as he died is
something that I never want any of these families to suffer. I
beg the Government to do the right thing and remove whatever
barriers there may be and guarantee them access to this
life-changing, life-saving treatment.
17:19:00
(Hemel Hempstead) (Con)
May I say what a moving speech that was by the hon. Member for
Middlesbrough ()? That sort of personal
experience is exactly what this issue is all about.
I came into politics to help. To my knowledge, I do not have a
single constituent who benefits from a prescription for medical
cannabis, but that does not make it any less important that I
campaign on behalf of the all-party parliamentary group. I could
not disagree with a single word in the speech by my hon. Friend
the Member for South Leicestershire (), who succeeded me as
co-chair when I stepped down.
In 2015, as the Home Office Minister responsible for drug policy
in Government, and sat where the Minister is sitting now, I made
a speech saying that the Government were minded to allow the
prescribed medical use of cannabis. I did not say that for the
sake of it; I said it because the then Home Secretary, my right
hon. Friend the Member for Maidenhead (Mrs May), gave me
permission to do so. She went on to be Prime Minister, and one of
the reasons why Alfie got his medication, and why the Caldwell
family’s campaign was so successful in the Province, was that she
picked the issue up and said, “We are going to do something about
this.” In 2018, the then Home Secretary was able to change the
law for that reason.
I say to all colleagues, and to anybody listening to the debate,
that this issue is not about rolling a cannabis joint. It is
about a group of children, some of whom have clicked over into
adulthood now, who may well not have been here today were it not
for some very brave consultants turning their backs on what the
profession was telling them to do, and doing instead what was
right for those children. Those consultants have come under
enormous pressure not to sign the prescriptions.
When we drafted the legislation, we were very careful to ensure
that it was not up to GPs alone to issue the prescriptions. We
did not want to get into another opioid situation—I will not say
that opioids are prescribed willy-nilly, because that would be
unfair, but we know there is an opioid epidemic. We specifically
said that the GP had to refer the child to a specialist, and that
it would be for the specialist to decide. A few have been brave
enough to do so.
Sadly, as my hon. Friend the Member for South Leicestershire
mentioned, and as the parents were telling us only yesterday when
they were here lobbying colleagues, some of those consultants are
retiring, and of those who want to prescribe medical cannabis,
some are too frightened that they will be referred to the
professional body. If they do prescribe it, their employers are
refusing to honour the prescription. I thought we had an NHS that
was free at the point of delivery when an NHS prescription is
issued.
I have no notes—I have no need for them. I have discussed this
issue so many times in this Chamber, as well as in the main
Chamber, where I will be tomorrow. Politicians get it;
Secretaries of State get it; the Minister gets it. But parts of
the medical profession do not get that they are responsible for
keeping these young children alive, and that they need to get off
their butts and do so.
17:23:00
(Liverpool, West Derby)
(Lab)
It is an honour to serve under your chairship, Ms Bardell. I
thank the hon. Member for South Leicestershire () for securing this incredibly
important debate and for his extremely powerful contribution. I
am also grateful for the other contributions that we have heard,
especially that of my great friend, the hon. Member for
Middlesbrough ().
I pay tribute to those of my Liverpool, West Derby constituents
who are living through the devastating consequences caused by the
lack of access to medicinal cannabis. I pay tribute to the
families, their friends and all those in our community who have
campaigned relentless for those people. They should not have to
fight that hard and they should not have to endure so much. It
was a real privilege to meet some of the campaigners at the End
Our Pain event. One of my constituents wanted to be there, but it
is extremely difficult for her to be away from her child at the
moment—their time together is so precious.
I was proud to sign End Our Pain’s letter to the Prime Minister
and Secretary of State yesterday, which asked for immediate
action to find a way to help the families with children with
severe epilepsy, who continue to be denied NHS access to medical
cannabis, as we have heard so powerfully so far. I know that the
Minister was listening intently, and I can see the empathy in her
eyes. I urge her, on behalf of my constituents, to take immediate
steps and do whatever it takes to help these families. I ask that
the Minister intervene to help adults who require access to
medical cannabis under NHS prescriptions. I spoke to some
families yesterday. There are siblings going through the same
unimaginable pain. I am happy to discuss this at any time with
the Minister.
The law was changed on 1 November 2018 to allow access to medical
cannabis under prescription. This brought hope to many families.
In my first meeting after becoming an MP in 2019, I spoke to
families and they had an air of optimism. They thought there was
change coming, but the reality three years on, as so eloquently
put by the hon. Member for South Leicestershire, is that only
three NHS prescriptions have been written for whole-extract
cannabis oil. Families are having to raise £2,000 a month to buy
this medicine privately.
We need to remember that we are in the middle of a pandemic, so
funds that those families had raised previously had gone. The
people I spoke to yesterday were talking about mortgaging or
selling their house, doing whatever they can to raise the money.
Tragically and heartbreakingly, there are families who believe
that this medicine will help their child, but they will not put
the child on it because of the limitations to starting the
process and having to take the child off, as well as the
financial issues. I cannot imagine what is going through their
minds.
My constituent Lauren wrote to me last night. Although I cannot
do full justice to everything she put in the email, I would like
to impress on the Minister just some of what she is going through
and what she is asking from the Government. She says:
“My time together with my son is precious, and I shouldn’t have
to keep fighting. I want to make memories for whatever time we
have left. In March NICE reiterated their guidelines about
prescribing medical cannabis and these guidelines are certainly
not being enacted. The Health Secretary must help now before it’s
too late. Allow GPs to prescribe, and if that can’t be done
instantly, then establish an emergency fund for the children
already benefiting from private prescriptions.”
Lauren is a truly awe-inspiring mum and campaigner, like many I
met yesterday. Her asks are simple and need to be listened to.
Families are being pushed from pillar to post, and this injustice
cannot continue. The interests of patients should be put first,
and the system must start delivering the enormous benefits that
this medicine can offer.
17:27:00
(Glasgow North) (SNP)
It is a pleasure, once again, to serve under your chairmanship
this afternoon, Ms Bardell. I would not often say that I agree
with every word said by a Conservative Member, but in the case of
the hon. Member for South Leicestershire (), it is accurate. He gave an
incredibly considered speech. It is great to hear the consensus
that exists in this room.
We have today’s debate, my hon. Friend the Member for Inverclyde
() has a more general debate
tomorrow on the medical use of cannabis, rather than in cases of
epilepsy, and the hon. Member for Manchester, Withington () has introduced a private
Member’s Bill on the issue. That shows the cross-party consensus,
the momentum and the urgency of the issue. Everyone today is
speaking about their constituents’ experiences. I pay tribute to
all the families and campaigners who have come forward and are
prepared to speak out. I met with some yesterday at the End Our
Pain lobby. Plenty of my own constituents have lobbied on the
issue, because they have been moved by the stories they have
heard, and I have a particular case.
The name of the campaign, End Our Pain, says so much. It is the
pain that the individual children, and the adults, are
experiencing with their medical conditions. It is the
psychological pain the families are going through as well, having
to watch the physical pain that their children are suffering. All
that pain can be, at the very least, mitigated, if some of the
steps that we have heard about are properly taken.
I have spoken previously about my constituents John and Laura and
their beautiful daughter Bláthnaid, who is affected by Aicadri
syndrome, which is a very severe and rare form of epilepsy. There
are only several thousand cases worldwide. It is very difficult
for clinicians to know what might or might not work. It is
incredibly distressing for both the parents and the children, who
do not understand what is happening when they go through these
seizures. Many of the conventional medicines that are tried have
their own side effects that cause particular difficulties, or
resistance builds up, which increases a different kind of
suffering.
Is the hon. Gentleman aware that doctors are prescribing
off-label drugs that work for adults, particularly steroids, to
these children, but they are not willing to look at medical
cannabis?
Yes, and a few years ago we had the Off-patent Drugs Bill,
which sadly did not make as much progress as it could have done.
That had the potential to give doctors more freedom, which is
clearly one of the messages coming out of the debate. Of course
there will be an element of risk, but there has to be a way of
managing and mitigating it so that doctors can feel more
confident about prescribing cannabis-derived treatments.
When my constituents see the positive effects that CBD can have,
they wonder what effects a drug with THC might have. When they
see the benefits to other children, even though every case and
condition is unique, the potential must exist there, and when the
alternative is to go private and pay incredible amounts of money,
which is not without its own risk, the frustration becomes very
real, so the Government have to speed up the trials and the
opportunity for people to take part in them. They have to look at
how the licensing can improve and how we can increase the
confidence of doctors. Above all, they have to listen to the
voices of parents and patients, and their carers and advocates in
Parliament.
17:31:00
(Edinburgh West) (LD)
It is a pleasure to serve under your chairmanship, Ms Bardell.
The debate is a bit like groundhog day for many of us—Members
will forgive the expression. We have made the arguments about the
children in our constituencies, and about the pain that their
families are going through, knowing that there is a drug that not
only can but does help them. In my constituency, Murray Gray has
been transformed from a wee boy who was constantly ill, in and
out of hospital and missing school, and whose parents feared for
his life almost daily, to a happy wee boy who pays football with
his dad, and has been to my office and explained to me exactly
what dinosaurs are—not that I am one of them.
Seeing that transformation makes me only more determined to give
what support I can. For me, and I am sure for many others, the
question remains: why did the Government make medicinal cannabis
legal if they did not intend it to be for the benefit of these
children? I am sure that they did. When the then Home Secretary
made that move, I am sure that the motivation was to improve the
lives of these children, so why are the Government not taking the
last step to encourage the medical profession to make that
happen?
(Windsor) (Con)
I met the father of Jorja Emerson the other day. He was literally
in tears because his lovely daughter has multiple fits daily. The
frustration is that the last remaining consultant who could make
the prescriptions has retired. There is a real danger that some
of these children will no longer have access to a drug that the
Government intend them to have access to. I hope that the
Minister has heard my intervention.
The hon. Member makes a pertinent point. This is the nub of the
issue: we need consultants to be encouraged and enabled to write
national health service prescriptions for these children. We have
pestered the Government and will go on pestering the Government.
There will be no resting place for them on this issue until we
have the assurance that these children will get the help that I
am sure that the Government originally intended them to have, and
that is still just outwith their reach.
17:34:00
(Inverclyde) (SNP)
I congratulate the hon. Member for South Leicestershire () on securing the debate. It
is great to see a Minister from the Department of Health and
Social Care responding today, because for far too long we have
been talking to the Home Office about these issues. I believe
that the Minister is an ex-nurse, if there is such a thing;
perhaps it is “Once a nurse, always a nurse.”
Yesterday in Portcullis House, family members came to tell us
their heart-rending stories, yet again. As we politicians
listened, the feeling of, “What can we do?” sank into us.
We went over to No.10 Downing Street and delivered a
letter—another letter—explaining the situation to the Prime
Minister. During the course of the day I talked to a number of
parents, and one of them asked me a question that I have been
asked many times, but every single time it hits home: “What would
you do if it was your child? What would you do if your child was
suffering 30 seizures and more a day? Would you reach for the
rulebook, or reach for the medicine— if you could afford it,
because right now, in this country, if you cannot afford it, you
are not getting it?”.
There have been only three NHS prescriptions, as was mentioned,
despite the now Health Secretary promising to do everything he
could to help. I am fascinated by that; three means that there is
precedent. We have broken the dam. If there were none, it would
be a different argument—but there have been three. Why not 30?
Why not 300? Why are we still scrambling around for these things?
Hannah Deacon, who has been mentioned often in this debate, and
whose son Alfie is in receipt of one of those NHS prescriptions,
has written to the Health Secretary three times asking him to
help, as he promised to do when, as Home Secretary, he wrote to
her. All three letters have gone unanswered. Some politicians are
hiding behind medical professionals, and some in the medical
profession are hiding behind politicians. The parents of these
children have no place to hide. They have to manage the reality
of the situation day in, day out. We need progress. We need to
accept the validity of real world evidence. Asking kids to take
part in trials with a placebo is abhorrent.
Many barriers would be broken if GPs were allowed to prescribe
medical cannabis. At the moment, they cannot initiate
prescriptions but can follow up. Cannabis is largely a GP
medicine, given its efficacy in GP conditions such as pain and
anxiety. It would be of enormous help to allow GPs to initiate
prescriptions. A recent survey showed that about a quarter of GPs
would be happy to prescribe it. This would require a simple
change to the relevant misuse of drugs statutory instrument; it
would not require parliamentary time.
I look forward to tackling this issue in much more detail
tomorrow in the Chamber. I hope that we can investigate all the
problems, and ultimately come up with solutions. We have talked
round and round this subject for a long time. Three years and
three months on from a promise by the UK Government to make
medical cannabis available, we are still no further on. It is a
crying shame that these people are still living in hope—living, I
have to say, in desperation at the situation they find themselves
in. They are looking to us politicians to do something about
this. In my privileged position, I am sick to death of having to
say to those people that we are no further forward.
Please, Minister, take on board what we have heard today.
Politicians are asking the Minister, cross-party—a very rare
thing—to look at the situation and do what she can, now and in
the longer term. On what could be done now, if there was a fund
that we could reach into to pay for these prescriptions, that
would be a massive step forward, including for the parents and
guardians of these children, who, day in and day out, are asking
us to do something for them.
17:38:00
(Leicester West) (Lab)
It is a pleasure to serve under your chairmanship, Ms Bardell. I
congratulate the hon. Member for South Leicestershire () on securing this important
debate. We have worked together over many years on health issues,
and he has done very important work alongside my hon. Friend the
Member for Gower () through the all-party
parliamentary group on medical cannabis under prescription.
I start by saying to those who have spoken in the debate and
those watching elsewhere that I cannot begin to imagine how
difficult it must be to be the parent of a child with serious
epilepsy. The fear that they go through every day, and the
difficulties that they experience, must be beyond terrifying. I
also recognise the huge financial burdens that many parents face,
and the anxiety of parents who want access to these
prescriptions, but are still denied it.
As the hon. Member for South Leicestershire said, it has been
three years since the then Home Secretary, now Health Secretary,
changed the law on this very important issue. As we all know,
that change came about after a number of very high-profile
campaigns in utterly heartbreaking cases of children suffering
from epilepsy, including Billy Caldwell and Alfie Dingley. I pay
tribute to the families who campaigned relentlessly on these
issues. It gave hope to people that things would change. Yet
three years later, we do not seem to be very much further
forward. As the hon. Member for South Leicestershire said, the
law has changed, but the practice has not.
I will focus on three things that need to happen to put this
right. The first, which many hon. Members have spoken about, is
the desperate need for more research and evidence. One of the
barriers to clinicians prescribing is that they feel they lack
knowledge, or are not really sure about the evidence on both the
benefits and the risks. That point has been made time and again
over the last three years. It was made during the original
review, back in 2018, particularly by the Advisory Council on the
Misuse of Drugs. It was repeated by the Health and Social Care
Committee in its review of why things had not changed, back in
2019. Six of its 11 recommendations were about providing more
research and evidence. Indeed, that was called for by the then
chief scientific adviser, now chief medical officer, , and in the NHS England
review commissioned by the last Health Secretary, the right hon.
Member for West Suffolk ().
I hope that the Minister will say where we have got to on that
issue, and particularly on the point about more research and
evidence from clinical trials being needed. However, that last
point absolutely cannot mean taking children off these products
if they are on them; that would be completely wrong. How will she
make progress on all those issues?
Secondly, what other steps are being taken to improve access? I
will focus briefly on three of the 10 recommendations made by NHS
England. One was that the national medical director and chief
pharmaceutical officer for England should write to doctors and
pharmacists, reminding them of the guidance on prescribing, how
they can access a cannabis education package produced by Health
Education England, and how to get the message out about what can
happen at present. NHS England also recommended much clearer
information for patients, and that a specialist clinical network
be established, so that everybody is aware of the real evidence.
Could the Minister comment on what further action the Government
have taken on that?
Finally, a really difficult but important point: as we move
forward with the research and evidence, and as we try to improve
understanding among all professionals—GPs as well as specialists,
because we can have a partnership approach—what will we do to
support those parents who are paying such huge amounts of money?
Have the Government considered what support might be made
available to them?
Changing the law is essential, but getting that to work in
practice—changing hearts and minds, as well as the law—is the
only way we will make progress. I thank all right hon. and hon.
Members who have spoken. I hope that the parents out there
listening know that they have champions in this place, and that
we will carry on doing our best to make sure we get the best
results for their children.
(in the Chair)
Before I call the Minister, I say gently and kindly to her that I
would expect her to finish by 5.44 pm, so that I may call the
hon. Member for South Leicestershire () to sum up for two
minutes.
17:44:00
The Parliamentary Under-Secretary of State for Health and Social
Care ()
I would like to start by congratulating my hon. Friend the Member
for South Leicestershire () on securing the debate. He
lobbies on this issue almost daily, representing constituents
such as Maya and Evelina so well. I fully appreciate the strength
of feeling and the impact that this issue has on some of the most
vulnerable children in their daily struggle with drug-resistant
epilepsy. That is why, three years ago, my right hon. Friend the
Secretary of State for Health and Social Care, who was then Home
Secretary, changed the law to recognise the need to allow
unlicensed cannabis-based products to be prescribed by specialist
doctors. The Government are supportive and have used many levers,
which has been quite challenging at times.
My right hon. Friend the Member for Hemel Hempstead ( ) hit the nail on the head when
he said that this is now more a clinical issue than a political
one. In many cases, doctors are unwilling to prescribe medicinal
cannabis; we heard from a number of Members that we may be down
to just one clinician left who is willing to do that. The main
reason is that these products are still unlicensed. The way that
medicine works in this country is that the Medicines and
Healthcare Products Regulatory Agency will license a product
after significant research, not just into the efficacy—we have
heard from many Members that there is a strong feeling that these
medicines work—but into the adverse events and potential side
effects. In prescribing these medications, the clinicians will
take responsibility both for the drugs working and for any impact
of those drugs.
This is the argument that always comes up in the briefings for
Ministers. If it is not safe, how are prescriptions being given
for free on the NHS? If it is safe, give it to the rest of them.
It cannot be right that time and again Ministers use the argument
about safety, when prescriptions are given free on the NHS.
These are clinical decisions. No one is saying that these
products are not safe, but there is not the evidence base to get
the licence. The MHRA does this for every single medicine, not
just medicinal cannabis.
I want to set out how we can get to a place where we can get
these drugs licensed and clinicians will feel confident in
prescribing them. We recognise that, for many children, these
drugs improve their quality of life—individuals have reported
improvements—but without that research evidence base, the MHRA
will not give a licence. The MHRA is an independent body—it is
not controlled by the Government—and the clinicians will take
advice and guidance from it. We may agree or disagree with how
the MHRA licenses a medicine, but that is the process for all
drugs. It is not just the MHRA—no country in the world has
licensed this product. The Food and Drug Administration has not;
the European Medicines Agency has not; the MHRA has not. The
solution is in pushing the clinical research needed for a licence
to be granted, which would open up prescribing for clinicians
around the country.
Do the Minister and the MHRA not recognise that there is an
abundance of practical evidence from the families who have
scrimped and saved and raised money through charitable activities
to fund the administration of the drug, and that it works? Surely
that is persuasive. These families have not got time to wait for
the research that the Minister is talking about, and I am yet to
hear anybody tell me what harm would be done if that drug were to
be given to those who need it and want it.
There are concerns, particularly around the THC element, that
there could be some effect on the developing brain and on heart
conditions. Research is needed not just on the effect of the
drugs, but on their safety.
I want to point out that the Government have made funds available
for good-quality research. That does not have to be done by the
manufacturers; it can be done by charities, clinicians or
researchers. A range of people can come forward to carry out
clinical research. The MHRA—
Will the Minister give way?
I will not; I have only a couple of minutes left.
The MHRA is well equipped to provide advice to any applicants
wishing to conduct clinical trials.
Will the Minister give way?
I have literally got two minutes left.
Currently, 13 trials are ongoing across the United Kingdom. In
the previous 12 months, six of the other trials of cannabis-based
products were completed, so some research is coming through the
pipeline to help with that evidence base. I want to touch
on one—the randomised clinical control trial mentioned by my hon.
Friend the Member for South Leicestershire.
It is true that one study has three arms, one of which is a
placebo. Having worked in clinical research myself, I reassure my
hon. Friend that there are strict ethical guidelines for any
clinical research. If someone is allocated to the placebo arm but
it is clear when monitoring the research that one arm is doing
significantly better than another, the trial has to be unblinded.
Anyone on a placebo arm is automatically put on the arm that is
doing best. I worked on clinical research for breast cancer, when
we were trying to get Herceptin licensed, and for some patients
that was the quickest way to get the drug. If there is clear
evidence that one arm is working far better than others, patients
can be moved on to that arm. It is a way of fast-tracking the
drug for licensing.
I reassure Members that I absolutely understand the issue. The
Government have changed the law to allow use of medical cannabis,
but unless we give clinicians the confidence that the drugs,
first, work—a feeling that they do seems to be the consensus in
the Chamber—and, secondly, have a safety profile, they will not
prescribe them. We can debate it forever in the House, but the
clinicians have to be convinced. The way to do that is to get the
product licensed, and the way to do that is to get good-quality
research that the MHRA can look at to feel confident in licensing
that drug.
The Government’s view is that there is funding for such research.
My commitment to Members present today is that I will work with
other colleagues to see whether we can speed up applications for
research, encouraging them to come forward. For many Members,
that is not the answer that they wanted to hear; they want me to
stand up and say, “The drugs will be available tomorrow and we
have people to prescribe them.”
We have to re-categorise cannabis from schedule 2 to schedule 4.
That will open the gateway to medical research. Right now, it is
hard for a lot of medical researchers to gain access to the
product in the first place.
The licensing process is independent of Government, but we have
levers to speed that up to ensure that the research coming
through the pipeline—I have outlined some studies already in
progress—will help the evidence base. We have been here before
with other drugs in other sectors and we have manged to get
there. We have another debate on Thursday, at which I am sure
Members will press me further, but my commitment is that we will
use every lever possible to get the research and the licensing
process through, so that doctors across the country feel
confident to prescribe this medicine, which makes such a
difference to young people’s lives.
17:53:00
I thank all Members for contributing this evening. I thank the
Minister for her response. Clearly, it is not the response that I
was hoping for, but I know that she genuinely wants to find a
solution.
I have offered a temporary solution. Doctors are prescribing this
medication, but they are prescribing it privately. Many private
prescriptions are being given by the medical profession to kids
such as Evelina and Maya. My request once again to the Minister
in my summing up is about her having a discretionary fund. Why do
I know that? Because her predecessor told me so in answer to one
of the debates that we had. The Minister has that discretionary
fund and the executive authority to permit private
prescriptions—which the parents of Evelina and Maya, and all the
other parents across the country, have to pay for—to come from
that pot, as a temporary solution until the Government, the
regulatory bodies, the medicinal bodies and the medical
profession sort out the issue.
I will be coming back to the Minister, I am afraid, once again
requesting access to that fund.
Question put and agreed to.
Resolved,
That this House has considered medical cannabis under
prescription for children with epilepsy.
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