Epilepsy Society

A Message from Lord Pickles and Lord Blunkett, followed by Epilepsy Society's best practice article

The ability to listen and learn from one another has always been vital in parliament, in business and in most aspects of daily life. But at this particular moment in time, as national and global events continue to reiterate, it is uncommonly crucial that we forge new channels of communication and reinforce existing ones. The following article from Epilepsy Society is an attempt to do just that. We would welcome your thoughts on this or any other Parliamentary Review article.

Blunkett signature Rt Hon The Lord David Blunkett
Pickles signature Rt Hon The Lord Eric Pickles

www.epilepsysociety.org.uk

THE PARLIAMENTARY REVIEW
Highlighting best practice
THE PARLIAMENTARY REVIEW
Highlighting best practice
14 | EPILEPSY SOCIETY
CEO Clare Pelham
3T MRI scanner enables us to
look deep inside the brain
Epilepsy Society is the UK’s leading epilepsy charity. Its
headquarters in Buckinghamshire are a centre for medical
research into the condition, housing the only MRI scanner
in the UK dedicated solely to epilepsy. CEO Clare Pelham
tells
The Parliamentary Review
that the charity also operates
an NHS epilepsy assessment facility that provides individual
assessment, rehabilitation services and groundbreaking research
opportunities. She explains the scale of the condition and
discusses just how devastating it can be.
Amelia Roberts was just 21 when she died of a fatal seizure. She was found by
her two sisters at their home, in the bath. Although it was initially thought the
young student had drowned, it has since been confirmed that, tragically, it was her
epilepsy that caused her death.
Sudden unexpected death is an aspect of epilepsy that is little known and rarely
talked about. Yet sudden unexpected death in epilepsy (SUDEP) claims more than
600 lives in the UK every year. Most commonly it is young people who are affected,
just as they are about to become independent adults. Most of those deaths are
thought to be potentially avoidable.
For the Roberts family, SUDEP is a life sentence. They have been robbed of the
precious daughter and sister who made their family complete. Hamish Roberts is
Amelia’s father. “If we had been able to control Amelia’s seizures, her tragic death
may have been prevented,” he said. “It is too late for our daughter, but as a family
we are determined to make sure that other families are not swallowed up by the
grief that has consumed us.”
FACTS ABOUT
EPILEPSY SOCIETY
»CEO: Clare Pelham
»Established in 1892
»Based in Buckinghamshire
»Services: Leading provider of
epilepsy services including
medical care and support
services, research, information
and residential care
»No. of employees: 334
»www.epilepsysociety.org.uk
Epilepsy Society
15EPILEPSY SOCIETY |
HEALTH & SOCIAL WORK
The scale and impact of epilepsy
Sudden unexpected death is a key area
of research at Epilepsy Society, the
UK’s leading epilepsy medical research
charity. There are 600,000 people in the
UK with epilepsy. So, on average, every
MP in the country will represent 1,000
constituents with the condition. For one
third of them, their seizures will not be
controlled by currentmedication.
Unless you have epilepsy yourself, or
know someone with the condition, it
is impossible to understand the huge
impact that seizures can have on your
life, and the worry that epilepsy causes.
People with uncontrolled seizures
live their lives on amber alert, never
knowing when the next seizure will
happen, where it will happen, and how
people around them will react. This can
affect their education, employment
and relationships. And for many with
epilepsy, and their families and friends,
it means worrying about whether the
next seizure might befatal.
Although epilepsy has long been a
Cinderella condition, statistically it is far
more common as a neurological disease
than multiple sclerosis, Parkinson’s disease
and cerebral palsy. People who have had
a seizure account for ten per cent of call
outs to the London Ambulance Service.
Young people with epilepsy are over
20 times more likely to die prematurely
than those in the general population.
It is these statistics, and the very personal
stories of vibrant young women such
as Amelia, that fuel Epilepsy Society’s
commitment to improving the diagnosis
and treatment of epilepsy. These goals
are too often limited by lack of funding
andresources.
The greatest hope of seizure freedom for
those with drug-resistant epilepsy is brain
surgery. If our neurologists can identify
the focal point of a person’s seizures,
there is a chance that the surgeon may
be able to remove that part of the brain,
and with this surgery comes the real
possibility of stopping the seizures.
Finding the cause of SUDEP, and how
each individual person’s risks can be
managed and minimised, is quite
literally a race against time.
Modern day developments
Epilepsy was first described as a disease
of the brain by Hippocrates in 400BC.
And for more than 2,400 years it has
baffled scientists and medics alike. It
is only now, in the 21st century, that
advances in science, technology and
our understanding of the human brain
are creating a synergy that promises
hope of solving the condition that
affects one in 100 people.
The Epilepsy Society was founded
by Victorian neurologists and
philanthropists in 1892. It was originally
established to give people with
the condition the chance to find a
meaningful life with employment out
in the countryside and away from
the London asylums and workhouses
where they were often confined.
Our founding fathers were true pioneers,
challenging the culture of a time that
stigmatised people with epilepsy. Today
in the 21st century, we must be equally
groundbreaking and brave. Our mission
is to apply the very latest genomics
research, artificial intelligence and
sophisticated neuroimaging techniques
to tackle a condition that has consistently
puzzledmedics.
Sophisticated scans
help us to diagnose the
causes of epilepsy
Finding the
cause of
SUDEP, and
how each
individual
person’s risks
can be
managed and
minimised, is
quite literally a
race against
time
“
“
BEST PRACTICE SPONSOR 2020
15EPILEPSY SOCIETY |
HEALTH & SOCIAL WORK
The scale and impact of epilepsy
Sudden unexpected death is a key area
of research at Epilepsy Society, the
UK’s leading epilepsy medical research
charity. There are 600,000 people in the
UK with epilepsy. So, on average, every
MP in the country will represent 1,000
constituents with the condition. For one
third of them, their seizures will not be
controlled by currentmedication.
Unless you have epilepsy yourself, or
know someone with the condition, it
is impossible to understand the huge
impact that seizures can have on your
life, and the worry that epilepsy causes.
People with uncontrolled seizures
live their lives on amber alert, never
knowing when the next seizure will
happen, where it will happen, and how
people around them will react. This can
affect their education, employment
and relationships. And for many with
epilepsy, and their families and friends,
it means worrying about whether the
next seizure might befatal.
Although epilepsy has long been a
Cinderella condition, statistically it is far
more common as a neurological disease
than multiple sclerosis, Parkinson’s disease
and cerebral palsy. People who have had
a seizure account for ten per cent of call
outs to the London Ambulance Service.
Young people with epilepsy are over
20 times more likely to die prematurely
than those in the general population.
It is these statistics, and the very personal
stories of vibrant young women such
as Amelia, that fuel Epilepsy Society’s
commitment to improving the diagnosis
and treatment of epilepsy. These goals
are too often limited by lack of funding
andresources.
The greatest hope of seizure freedom for
those with drug-resistant epilepsy is brain
surgery. If our neurologists can identify
the focal point of a person’s seizures,
there is a chance that the surgeon may
be able to remove that part of the brain,
and with this surgery comes the real
possibility of stopping the seizures.
Finding the cause of SUDEP, and how
each individual person’s risks can be
managed and minimised, is quite
literally a race against time.
Modern day developments
Epilepsy was first described as a disease
of the brain by Hippocrates in 400BC.
And for more than 2,400 years it has
baffled scientists and medics alike. It
is only now, in the 21st century, that
advances in science, technology and
our understanding of the human brain
are creating a synergy that promises
hope of solving the condition that
affects one in 100 people.
The Epilepsy Society was founded
by Victorian neurologists and
philanthropists in 1892. It was originally
established to give people with
the condition the chance to find a
meaningful life with employment out
in the countryside and away from
the London asylums and workhouses
where they were often confined.
Our founding fathers were true pioneers,
challenging the culture of a time that
stigmatised people with epilepsy. Today
in the 21st century, we must be equally
groundbreaking and brave. Our mission
is to apply the very latest genomics
research, artificial intelligence and
sophisticated neuroimaging techniques
to tackle a condition that has consistently
puzzledmedics.
Sophisticated scans
help us to diagnose the
causes of epilepsy
Finding the
cause of
SUDEP, and
how each
individual
person’s risks
can be
managed and
minimised, is
quite literally a
race against
time
“
“
THE PARLIAMENTARY REVIEW
Highlighting best practice
THE PARLIAMENTARY REVIEW
Highlighting best practice
16 | EPILEPSY SOCIETY
We cannot do it on our own. That is
why we are so encouraged to hear of
the government’s post-Brexit drive to
invest £200 million in health and life
sciences, matched by a further £400
million in private investment.
We feel that we have the power to
revolutionise healthcare in the UK.
We have the expertise. We have the
technology. We have the will. If the
appropriate funding is targeted in
the right places, we can potentially
turn many diseases on their head,
includingepilepsy.
Using genome sequencing to
help understand individual cases
At its Chalfont Centre in
Buckinghamshire, Epilepsy Society is
employing whole genome sequencing
to understand how genes may
contribute to a person’s epilepsy. It is
using bioinformatics to analyse and
interpret big data to identify genetic
patterns that may be significant in
pinpointing why SUDEP happens and
how it may be prevented in the future.
Researchers at the Epilepsy Society
Brain and Tissue Bank are examining
brain tissue of people who have died
of SUDEP and comparing it with tissue
samples from those with epilepsy who
have died but who did not succumb
toSUDEP.
An exciting new platform
“Nanostring” means that the DNA
and RNA of more brain tissue samples
can be analysed, helping to enrich
knowledge and guide research.
Ley Sander is medical director at
Epilepsy Society and professor of
neurology at UCL. He explains:
“Our scientists use sophisticated
neuroimaging techniques to look
deeper into the brain to gain a greater
understanding of its structures.
Advancing technology around
brain surgery brings real hope that
more people whose seizures do not
respond to medication might have
the opportunity of undergoing life-
changing epilepsy surgery.”
Where the human eye is unable to
detect abnormalities on brain scans,
we are using artificial intelligence to
teach computers to pinpoint significant
changes. But it is a race against time
and every life lost increases theurgency.
We believe that this was an amazing
thing for a young woman to do. We
are very grateful for the knowledge
that this is helping us to accrue and
the lives that might ultimately be saved
by Amelia’s selfless donation. Amelia’s
family should feel very proud.
I hope that others will support Amelia’s
family – and the 1,000 people with
epilepsy in every constituency – by
contacting the Epilepsy Society. We
need all the help we can get.
Where the
human eye is
unable to detect
abnormalities on
brain scans, we
are using
artificial
intelligence to
teach computers
to pinpoint
significant
changes
“
“
Before her untimely death, Amelia Roberts had quietly arranged to
donate her brain for research after her death. Hamish Roberts said of
this:
“ It was Amelia’s wish that her brain would be used to help scientists
discover more about the causes of epilepsy and how seizures can be
better treated.
“ We cannot bring Amelia back but we will do everything we can to
raise awareness of the risks of SUDEP among other families affected
by epilepsy, and to support the vital research being carried out at
Epilepsy Society to identify those at greatest risk, and ultimately to
minimise or eradicate that risk.”
Sequencing DNA is
helping researchers
at Epilepsy Society to
understand more about
the genetic contribution
to epilepsy

www.epilepsysociety.org.uk

This article was sponsored by Epilepsy Society. The Parliamentary Review is wholly funded by the representatives who write for it. The publication in which this article originally appeared contained the following foreword from Rt Hon Elizabeth Truss.

Rt Hon Elizabeth Truss's Foreword For The Parliamentary Review

By Rt Hon Elizabeth Truss

Even by the standards of the day –this has been one of the most exciting and unpredictable years in British politics.

The leadership election we’ve just seen marks a huge moment in our country’s history. This government is taking a decisive new direction, embracing the opportunities of Brexit and preparing our country to flourish outside the EU.

As international trade secretary, I’ll be driving forward work on the free trade agreements that are going to be a priority for the government. Free trade isn’t just an abstract concept bandied around by technocrats. It is crucial for a strong economy and for the ability of families to make ends meet. Free trade benefits people in every part of our country, as British firms export to new markets and people doing the weekly shop have access to a wider choice of goods at lower prices.

The essence of free trade is in the title: freedom. It’s about giving people the power to exchange their goods without heavy government taxation or interference. Commerce and free exchange are the engine room of prosperity and social mobility. I’m determined to tackle the forces who want to hold that back.

One of my priorities is agreeing an exciting new free trade deal with the US, building on the great relationship between our two countries and the Prime Minister and US President. But I’ll also be talking to other partners including New Zealand, Australia and fast-growing Asian markets.

And with the EU too, we want a friendly and constructive relationship, as constitutional equals, and as friends and partners in facing the challenges that lie ahead – a relationship based on a deep free trade agreement. Our country produces some of the world’s most successful exports, and the opportunity to bring these to the rest of the world should make us all excited about the future. It is this excitement, optimism and ambition which I believe will come to define this government.

For too long now, we have been told Britain isn’t big or important enough to survive outside the EU – that we have to accept a deal that reflects our reduced circumstances. I say that’s rubbish. With the right policies in place, we can be the most competitive, free-thinking, prosperous nation on Earth exporting to the world and leading in new developments like AI. To do that, we’ll give the brilliant next generation of entrepreneurs the tools they need to succeed. Since 2015, there has been a staggering 85 per cent rise in the number of businesses set up by 18 to 24 year olds – twice the level set up by the same age group in France and Germany. We’ll help them flourish by championing enterprise, cutting taxes and making regulation flexible and responsive to their needs.

As we do that, we’ll level up and unite all parts of the UK with great transport links, fibre broadband in every home and proper school funding, so everyone shares in our country’s success.

2019 has been the year of brewing economic and political revolution. 2020 will be the year when a revitalised Conservative government turbo charges the economy, boosts prospects for people across the country, and catapults Britain back to the forefront of the world stage.



Rt Hon Elizabeth Truss
Secretary of State for International Development