The Centre for Reproductive & Genetic Health

A Message from Lord Pickles and Lord Blunkett, followed by The Centre for Reproductive & Genetic Health'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 The Centre for Reproductive & Genetic Health 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.crgh.co.uk

BEST PRACTICE SPONSOR 2020
THE PARLIAMENTARY REVIEW
Highlighting best practice
16 | SICKLE CELL SOCIETY
independence payments for those
with sickle cell who are not in work.
Another has been a policy document
regarding the lack of a national
approach to teaching sickle cell in the
nursing curriculum.
Together with the UK National
Screening Committee, we have also
worked to improve access to the sickle
cell screening programme in the UK
through intensive patient engagement.
We won the tender, in conjunction
with the UK Thalassaemia Society,
to continue delivering the outreach,
engagement and development
programme for the next three years.
A lack of available treatment
options
We have been lobbying hard for the
pharmaceutical sector to carry out
more research and provide more
choice to keep people well and help
them to live longer. In comparison to
ten years ago, there are now a number
of large and small pharmaceutical
companies from across the world that
are carrying out clinical trials on new
drugs for sickle cell.
Future affordability will also be a
significant challenge. Going forward,
we will see more and more technologies
emerge – the likes of gene therapy and
genome work, which could potentially
alter the shape of a sickle cell. The
NHS may not be able to afford these
technologies – if clinical trials do come
to fruition, affordability will be the next
key question that the healthcare system
faces. It is vital that funding is dedicated
to the new treatments so that we can
see further improvements in the lives of
those living with sickle cell.
Securing our future
The last 10 years have been difficult
economically for our patients and also
our charity. We are aware that we
could do so much more if we had the
resources. We need to raise awareness
in order to raise funds, in addition
to applying for grants. We need to
learn from other charities that support
people with genetic conditions.
Forty years on, we still need to
improve understanding even though
this condition is no longer confined
to a small group of people. As the
population becomes more ethnically
diverse, there will be more relationships
between people of different ethnic
backgrounds. Soon sickle cell disease
will not be seen as a “black” condition.
Already, one in every 300 white babies
born today has sickle cell trait.
We look forward to our continued
partnership with NHS England and
Public Health England. We will continue
to work with the doctors, nurses,
psychologists and therapists who care
for those with the disease and lobby for
better and more consistent care across
the country. We will continue to be the
advocates for all those who have sickle
cell disease and their families and hope
to have your support in our mission.
We look
forward to our
continued
partnership
with NHS
England and
Public Health
England. We
will continue
to work with
the doctors,
nurses,
psychologists
and therapists
who care for
those with the
disease
»AVAILABLE TREATMENT OPTIONS
Outcomes in sickle cell disease have improved immeasurably in the
past 20 years, but there is still more to be done. Universal newborn
screening, prophylactic penicillin to prevent early mortality from sepsis
and the introduction of transcranial doppler screening to identify
those at risk of stroke have all been a huge advance. On the treatment
front, painkillers and blood transfusions continue to be the mainstay.
Bone marrow transplantation is available in children but only
for those who have a compatible sibling. The introduction of
hydroxyurea, a form of chemotherapy, has reduced morbidity from
painful episodes and acute chest syndrome significantly. However,
not everyone with sickle cell disease responds to hydroxyurea, and
patients have concerns about long-term implications.
We strongly believe that more research into effective treatments
is required to offer a wider choice that can improve the morbidity
and mortality as well as the quality of life of people living with sickle
cell. More resources need to be provided to support those with the
disease and their families, as having a painful and life-threatening
long-term condition has a wider psychosocial impact which affects
schooling, employment and family life.
17THE CENTRE FOR REPRODUCTIVE & GENETIC HEALTH |
HEALTH & SOCIAL WORK
Chief Operating Officer
Jonathon Fagg
Our clinic on Great
Portland Street
The Centre for Reproductive and Genetic Health is a
specialist fertility clinic operating in London. Chief
Operating Officer Jonathon Fagg tells
The Parliamentary
Review
that its world-leading, highly experienced and friendly
team have assisted thousands of parents in realising their
dreams of starting a family. Having consistently delivered some
of the best success rates in the country, CRGH continues to
deliver on achievements that set it aside from other clinics
in the same field. Jonathon maintains that its individualised
approach to fertility treatment has been essential to its
continued success.
Everything we do is driven by a single overriding goal: to help people whose lives
have been blighted by fertility problems to achieve their dream of a family.
In vitro fertilisation has seen dramatic improvements in its effectiveness over the last
30 years, but it come with no guarantees. Our approach to recruitment, training,
facilities, research activities, treatment protocols and quality management systems
are therefore based on a relentless drive to improve the success rates of treatment.
We’re very proud to be consistently ranked as the number-one fertility clinic in the
city for IVF success rates, and even more proud of a CRGH family that is 11,000
babies strong, and growing at over 1,000 a year.
FACTS ABOUT
THE CENTRE FOR REPRODUCTIVE
& GENETIC HEALTH
»Medical Director: Paul Serhal
»Chief Operating Officer:
Jonathon Fagg
»Established in 1990
»Based in central London
»Services: Fertility treatment
and genetic screening
»No. of employees: 105
»IVF cycles per annum: 2,100
»Babies born through CRGH
treatment: 11,000
»Winner of National Surrogacy
Fertility Clinic of the Year 2019
The Centre for Reproductive
& Genetic Health
THE PARLIAMENTARY REVIEW
Highlighting best practice
THE PARLIAMENTARY REVIEW
Highlighting best practice
18 | THE CENTRE FOR REPRODUCTIVE & GENETIC HEALTH
Everyday miracles
A cycle of IVF is an intensive experience
for both patients and staff. After
an initial consultation with one
of our doctors there are tests and
investigations; a tailored treatment
plan; a drug regimen to stimulate
egg production; multiple scans, blood
tests, and dosage adjustments to
achieve safe and effective stimulation;
surgical egg collection; fertilisation
and embryo development; embryo
transfer; a pregnancy test; and then
hopefully pregnancy scans at five and
eightweeks.
In addition to the treatment itself,
there is often an emotional journey
that cycles through hope, doubt,
fear, anxiety, joy and despair, even
before the final outcome is known.
Our people not only need technical
expertise, but also compassion,
patience and understanding to make
every one of our 2,000 patients a
year feel that their individual journey
is understood and supported. For 12
hours a day, seven days a week, we
deliver personalised care at scale, and
try to never lose sight of what success
means to those under our care.
Our range of people and treatment
options has also grown dramatically
in response to technology and to
societal trends. The services growing
most quickly are IVF and surrogacy for
same-sex couples, egg freezing for
people under 35 seeking to preserve
their fertility while they pursue other
life goals, and pre-implantation genetic
testing of embryos. We can now
biopsy a few cells from five-day old
embryos for genetic testing – allowing
parents with serious genetic diseases
such as sickle cell anaemia or cystic
fibrosis to avoid passing on the disease
to their children.
Most patients are now funded for this
by NHS England, who recognise it
not just as the right thing to do, but
also as a cost-effective decision for
the NHS when compared to a lifetime
of healthcare for the affected child.
We have been leading in this field of
research for many years, and regularly
break new ground, such as the first
baby born in the UK free of the BRCA1
cancer gene.
Growth at home and abroad
The fertility market across the West has
been growing consistently at five per
cent per annum for the last decade.
We enjoy growth at more than double
this rate, with growth coming from
both the UK and overseas. Almost 25
per cent of our patients are non-UK
residents, from Europe and the Middle
East, and more recently from China.
The UK has an excellent international
reputation for the quality of its
healthcare, and UK law and regulation
has achieved a very sensible balance
between close regulation of quality
and safety, and the widest possible
access to treatment regardless of
relationship status, sexual orientation
or health status.
We are an international business –
not only in terms of our strategic
aspirations, but also in relation to our
current customers, staff and supply
chains. We seek the best the industry
has to offer for our patients regardless
Main reception
We never lose
sight of what
success means
to those under
our care
BEST PRACTICE SPONSOR 2020
THE PARLIAMENTARY REVIEW
Highlighting best practice
18 | THE CENTRE FOR REPRODUCTIVE & GENETIC HEALTH
Everyday miracles
A cycle of IVF is an intensive experience
for both patients and staff. After
an initial consultation with one
of our doctors there are tests and
investigations; a tailored treatment
plan; a drug regimen to stimulate
egg production; multiple scans, blood
tests, and dosage adjustments to
achieve safe and effective stimulation;
surgical egg collection; fertilisation
and embryo development; embryo
transfer; a pregnancy test; and then
hopefully pregnancy scans at five and
eightweeks.
In addition to the treatment itself,
there is often an emotional journey
that cycles through hope, doubt,
fear, anxiety, joy and despair, even
before the final outcome is known.
Our people not only need technical
expertise, but also compassion,
patience and understanding to make
every one of our 2,000 patients a
year feel that their individual journey
is understood and supported. For 12
hours a day, seven days a week, we
deliver personalised care at scale, and
try to never lose sight of what success
means to those under our care.
Our range of people and treatment
options has also grown dramatically
in response to technology and to
societal trends. The services growing
most quickly are IVF and surrogacy for
same-sex couples, egg freezing for
people under 35 seeking to preserve
their fertility while they pursue other
life goals, and pre-implantation genetic
testing of embryos. We can now
biopsy a few cells from five-day old
embryos for genetic testing – allowing
parents with serious genetic diseases
such as sickle cell anaemia or cystic
fibrosis to avoid passing on the disease
to their children.
Most patients are now funded for this
by NHS England, who recognise it
not just as the right thing to do, but
also as a cost-effective decision for
the NHS when compared to a lifetime
of healthcare for the affected child.
We have been leading in this field of
research for many years, and regularly
break new ground, such as the first
baby born in the UK free of the BRCA1
cancer gene.
Growth at home and abroad
The fertility market across the West has
been growing consistently at five per
cent per annum for the last decade.
We enjoy growth at more than double
this rate, with growth coming from
both the UK and overseas. Almost 25
per cent of our patients are non-UK
residents, from Europe and the Middle
East, and more recently from China.
The UK has an excellent international
reputation for the quality of its
healthcare, and UK law and regulation
has achieved a very sensible balance
between close regulation of quality
and safety, and the widest possible
access to treatment regardless of
relationship status, sexual orientation
or health status.
We are an international business –
not only in terms of our strategic
aspirations, but also in relation to our
current customers, staff and supply
chains. We seek the best the industry
has to offer for our patients regardless
Main reception
We never lose
sight of what
success means
to those under
our care
19THE CENTRE FOR REPRODUCTIVE & GENETIC HEALTH |
HEALTH & SOCIAL WORK
of country of origin. Our staff are
drawn from 23 countries and speak 19
languages. We have patients visiting
from every continent in the world
except Antarctica. We import sperm,
equipment and consumables from the
US and Europe. We have prepared
for Brexit to ensure we can continue
to serve our patients, but a hard exit
from Europe carries major long-term
risks in terms of workforce, trade,
regulatory alignment and demand
from overseaspatients.
Continuing to expand
Over the next five years, we will be
opening a second clinic in London,
as almost half of all UK IVF cycles are
provided to patients living in London
and the South East, a ring of smaller
satellite clinics in the South East to
improve access and convenience for
patients living outside London, and our
first overseas clinic in Europe or the
Middle East.
We are expanding the range of genetic
testing services to cover thousands
of recessive gene mutations. Our
CarrierMatch service tests both parents
to ensure they are not healthy carriers
of the same gene mutation that could
combine and cause a serious disease
in their child. We are working with
partners on whole genome testing,
and as reliability improves and costs
continue to fall, we expect this to
become a routine test for everyone
undergoing IVF.
The law that governs fertility treatment
continues to evolve and align with
changing social values. The Law
Commission is currently consulting
on an improved legal framework for
surrogacy, and the current ten-year
limit on storing frozen eggs is under
review. The economic and health
impact of forced childlessness is
gradually being recognised, and there
is now a mainstream acceptance that
non-traditional family structures are
equally valid. We’re proud of our role
in this and look to the future with
optimism and confidence.
We have
patients
visiting from
every
continent
Embryology laboratory

www.crgh.co.uk

This article was sponsored by The Centre for Reproductive & Genetic Health. 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