I am going to start today in the same way that I started my proposition, and that is with a declaration,
that I am a founding governor of the local fertility support charity, Tiny Seeds, and have lived
experience of infertility and I.V.F. I have no financial interest, however, and made working towards
a fairer funding model for I.V.F. part of my manifesto. It is not that many years ago that women in
Jersey who were struggling to get pregnant or who had sadly lost babies were sent to antenatal or
maternity for treatment or assessment. They were often left to sit in waiting rooms full of heavily
pregnant women, to be asked how far along they were. Being treated in labour rooms where they
would have given anything to be delivering a baby, rather than fighting to get pregnant in the first
place. Clearly, this was unacceptable and I am pleased to say we have come a long way since then.
A large part of that progress made has been thanks to our very own Constable of St. Martin who
worked with others to campaign for Jersey to have its own dedicated Assisted Reproduction Unit.
That unit, dubbed the Clinic of Hope, opened in the 1990s and remains the Island’s dedicated unit
for fertility treatment, carrying out some fantastic work and supporting hundreds of patients every
year. I feel very privileged to be stood in this Assembly today, alongside the Connétable,
campaigning once again for better, fairer, more appropriate treatment for Islanders who need fertility
treatment. There is a part of me, however, who finds it quite sad that it always seems to have been a
fight, a battle to get there. Because infertility is a disease and it affects around one in 6 people in our
community, and that is a conservative estimate. Some people would put it at more like one in 4. It
does not discriminate, it affects men and women and it affects people from all backgrounds. Jersey’s
unique characteristics and demographics, including a higher maternal age average, means we are
perhaps even more impacted by its effects than other jurisdictions. Taking the one in 6 figure, that
is 8 of us in this Assembly and many more of our family, our friends, our colleagues; that is more
than 1,300 of Jersey’s civil servants, around 5 children in every class who will go on to be impacted
during their lifetime. Even if you do not realise it, it is likely that you know someone going through
or who has been through it and we are now at the stage where babies born via I.V.F. are adults living
and working in our community, perhaps they are even starting and having families of their own.
Infertility is not a niche subject, it is just one that is not talked about very often. A bit like mental
health, for a long time there has been a stigma associated with the disease and fear and anxiety about
talking about it. I first chose to speak publicly about my own experience of secondary infertility in
2020 as part of a campaign via the pages of the J.E.P., seeking to get the Assisted Reproduction Unit
reopened following the pandemic lockdowns. Clinics elsewhere had long since reopened but Jersey
was slow to respond and patients were suffering. There was even concern that A.R.U. (Assisted
Reproduction Unit) may be closed down altogether and once again it felt like a fight. The many
messages, calls, emails and conversations which followed really did surprise me and they left a
lasting impression, but in a hugely positive way. So many of those happy families that I had seen
and envied on Facebook and Instagram and assumed had had it easy when it came to having their
children, they had experience of infertility in some way and had fought their own battles. It really is
true that you never know what is going on behind those social media images. There were so many
A.R.U. babies out there, many, many others being longed for, so many people I knew who had
experience of I.V.F. but who I have never spoken to about it. I suddenly felt far less alone, not quite
as weird or like it was all my fault, no longer so isolated. It left me feeling quite empowered, which
brings me on to today. As well as hopefully making a financial difference to patients, I hope that
today this debate will go some way to helping those facing fertility struggles feel less alone. More
seen and like we, as politicians, recognised and acknowledge at least some of what they are going
through and the impact it can have on them personally but also on our community. At its heart this
proposition asks that we recognise that infertility is a disease and that I.V.F. treatment should be
offered to those impacted by it, in the same way any other healthcare treatment would be offered to
Islanders. We do not means test any other type of healthcare, so why do we means test for this?
Jersey is also believed to be unique in a European context in its means testing for access. My
proposition asks for the current means-tested model to be removed. It is currently set at a level so
low - household income of £40,795 and bear in mind that most people are couples going through
treatment - that there is no record of anyone ever having qualified for it, certainly formally by the
Health Department at least. To put that into perspective, even a couple working full-time for the
minimum wage would not qualify for help. That barrier to access should be removed and means
testing scrapped altogether and that is one of my concerns with the amendment, which seeks to
change the wording from removing means testing to replacing the system, but I will come back to
that later. Instead I am asking Ministers to come up with a new funding model based on providing
funding as per clinically-based N.I.C.E. guidance. That criteria currently states that women up to the
age of 40 should be offered 3 full cycles of I.V.F. funded and women up to the age of 42 one cycle.
I say “women” because although infertility can be a male factor, it is the women who go through the
majority of the treatment. The Health Department would then develop its own policies around further
access criteria built around that basic provision. For example, would it seek to limit access to only
those without children already, to those who do not smoke, to those with a B.M.I. (body mass index)
below a certain level? That is the approach taken in other places and the one that I propose we agree
to today, that the Assembly agrees the basic principle that we follow the current N.I.C.E. guidance
on 3 cycles and one cycle and that the department goes away and works out the finer details as part
of the business plan it brings back to the Assembly as part of the Government Plan process. In an
ideal world we would have no further restrictions on access but of course that would impact on
affordability. Why should we fund treatment at all? There is a large amount of evidence and facts
and figures contained in my report accompanying the proposition, and I do not propose that I am
going to go into it all in detail. However, if Members do have specific areas or questions they would
like me to provide more detail on in my summing up, please do let me know. Broadly speaking,
there are 3 main areas I would ask Members to consider today. The first is medical; infertility is a
disease, as defined by the World Health Organization, and we should be treating it in the same way
we treat other types of health conditions. It also means that as we move forward with building and,
hopefully, in the not too distant future agreeing a sustainable funding model for healthcare, then
funding I.V.F. treatment should be factored into the equation. We should not be denying Islanders
access to treatment because we have a historic problem with how we build and manage health
budgets. The right to start a family is enshrined in local and international human rights law, with the
Human Rights (Jersey) Law 2000 stating that: “Men and women of marriageable age have the right
to marry and to found a family, according to the national laws governing the exercise of this right.”
Providing fair and equitable access to fertility treatment should be considered in this context. The
amendment describes I.V.F. as an expensive procedure. I would contend that many aspects of
healthcare are expensive; hip replacements cost thousands of pounds, for example; lifelong diabetes
care, significant amounts of money; every night spent in hospital has a cost attached to it and so on.
At least with this proposal the ask is clear, it is defined in scope as well as time and provided to a
section of the community which otherwise has a relatively low call on the healthcare purse at that
point in their lives. It is also aimed at creating future taxpayers. The second consideration is
financial; I.V.F. should not be a treatment that only the wealthy can pursue, yet we know that the
current system prevents some Islanders from accessing treatment at all, while many others report
being forced into debt or having to choose between trying to start to have a family and, say, buying
a home. Some have even left or are considering leaving the Island for a cheaper way of life which
will allow them to fund their treatment or because they know they can move somewhere with a more
generous support system which will help them pay for treatment. I have come across people selling
beloved possessions to fund cycles, including their homes, those forced to have longer than ideal
breaks in treatment to be able to save up for their next cycle and that can be particularly problematic
for those whose body clock literally is ticking, as fertility declines with age and even faster after the
age of 35 and many, many cases of family and friends clubbing together to help a loved one go for
treatment. We saw last week the latest birth rate figures for Jersey drop even further. A lot of the
commentary online made a link with housing, with numerous people suggesting fewer Islanders were
having children or less children or more were leaving it later in life because they could not afford a
family home that had a bedroom for that child. At the very time that Islanders want to feel more
financially secure and able to provide for a family, our current system is forcing many of those who
require I.V.F. treatment into debt. By funding treatment we could help to ease this burden and give
them a helping hand in the right direction. I cite in my report the Tiny Seeds cost-of-living survey
undertaken last year, which quite clearly shows the impact of the financial pressures of treatment on
Islanders. It highlights the psychological impact that these worries can have too; 96 per cent of
respondents said their mental health had been negatively impacted by the cost of living specifically
in relation to their ability to pay for treatment. Fertility treatment on its own takes a toll emotionally
on couples. We should be doing all that we can to ease the burdens which may make this worse,
such as financially. There is also an economic case to consider. Those new figures I referred to, that
were out last week, showed that there were 799 births in Jersey last year; the lowest for a long time
and a 5 per cent drop on the previous year. The Island has a total fertility rate of 1.29 between 2021
and 2023. That is far below the replacement rate of 2.1 children per woman which is required to
maintain a stable population. Our general fertility rate was 43, compared to England and Wales
where the rate was 52. Our live births per 1,000 people was also lower than the U.K. and the
proportion of babies being born to women ages 20 to 29 has declined significantly from 42 per cent
to 24 per cent last year. The trends are clear, Jersey has a declining birth rate; a fertility rate below a
demographically comparable jurisdiction just across the water; and women are waiting longer to have
the children that they do have. Fertility declines with age and evidence shows that waiting until later
in life to start a family can make it harder to conceive and lead to potentially more complicated, and
that can also mean more costly, pregnancies and deliveries.
[14:45]
The latest statistics from that report last week on caesarean sections - and that showed there were 42
per cent of births between 2021 and 2023 resulted in caesarean section deliveries compared to 25 per
cent in England - is testament to this fact, because there is often a link between maternal age and that
type of delivery. At the same time, we know that our population is ageing and that there are
significant concerns about whether Jersey will have enough working age people to be able to pay for
the demographic bulge working its way through the system. If we are to truly start building a
sustainable population which will not have to rely on mass immigration into the future, we need to
start taking these figures seriously and considering what options there may be to addressing the
falling birth rate. Providing better funding for I.V.F. treatment, so that we can help those Islanders
who want to become parents but who need help, should be part of the response and seems a very
logical and obvious place to start. You could also argue that Jersey has a duty more than most to
help fund treatment, given its unique characteristics, which are contributing to the trends, such as the
high cost of living, housing costs, the high female labour participation rate and so on. Finally, in an
economic context, we should be considering our responsibility to help encourage today’s working -
age population to see a future in Jersey. I know of a number of people who have left or who are
considering leaving the Island because of a lack of access to treatment. Some of them are working
in professions where we are prioritising recruitment and retention, such as teaching and healthcare.
Why am I proposing the N.I.C.E. guidelines? In answering this question, it will probably also answer
why I have not accepted the amendment which removes the N.I.C.E. guidelines. N.I.C.E. are experts
in evidence-based practice and value for money. It is their core purpose to help practitioners and
commissioning bodies to get the best care for patients while ensuring value for money for the
taxpayer. At its October meeting, the Health Advisory Board heard that the senior leadership team
of H.C.S. had agreed to adopt N.I.C.E. guidance as their default position for clinical guidelines. The
minutes from that meeting on 4th October state: “This does not mean that N.I.C.E. was not being
used, rather this is now a clear statement that sets expectations.” Currently H.C.S. is not able to
provide assurance to the board regarding compliance. However, a piece of work to address this is
planned for early next year. A process has been developed for any new guidance that is issued to
ensure that it is incorporated into H.C.S. practice. It added that there may be legitimate circumstances
where H.C.S. cannot follow N.I.C.E., but it was stressed that this must be discussed in an open and
transparent way at the board, so that the people of Jersey know that they are getting what they should
get, as dictated by the scientific evidence and, if not, it should be clear as to why they are not.
N.I.C.E., the board heard, was adopted as H.C.S. clinicians are registered with the General Medical
Council and are members of the Royals Colleges in the U.K. Jersey is not the N.H.S. (National
Health Service), of course, and nor should we want or aspire for it to be, especially given its current
challenges, and adopting N.I.C.E. guidance does not mean that is the intention. Instead, it is about
tapping into a valuable resource for evidence-based clinical guidance which balances getting the best
care for patients with value for money and does so in the context of a system which our clinicians
recognise and understand, given their registrations. That, to me, is exactly what we are trying to
achieve here, so why would we not use it? We can also look to other jurisdictions for inspiration and
guidance. Fertility Europe’s European Atlas of Fertility Treatment Policies is a useful tool in that
regard, and it is attached to my report in the appendix. In the last week or so it has been confirmed
that Jersey will be officially featured in the next Atlas. Currently, we would be rated as very poor,
alongside countries such as Belarus, Bosnia, Herzegovina, Georgia, Switzerland and Turkey.
Belgium, Israel and the Netherlands and our near neighbour, France, all top the Atlas and are rated
as excellent. Belgium provides funding for 6 cycles. Israel offers nearly unlimited free treatments
to any Israeli woman up to the age of 45 until she has had 2 children with her current partner. Basic
private insurances cover treatment towards the third and fourth children. The Netherlands also has
an insurance-based system covering 3 cycles, while France provides funding for up to 4 cycles of
I.V.F. treatment for all women. Because of Jersey’s links with these places, I will also mention
Portugal, which funds 3 cycles and Poland, which recently voted to reinstate government funding for
I.V.F. starting from June, with up to 6 cycles covered. Finally on the N.I.C.E. guidance, updated
N.I.C.E. guidance in relation to fertility treatment is due to be published in May 2025. While it is
widely anticipated the new guidance will only improve what is offered to patients, the exact details
are unknown. The scoping document for that piece of work indicates this direction of travel and
states: “As part of the Women’s Health Strategy for England, the Department for Health and Social
Care has committed to removing non-clinical access criteria for fertility treatment and the
requirement for self-funding for initial treatments, particularly in relation to female same-sex couples.
My proposition is quite clear that it is asking for the current N.I.C.E. guidance in place today to be
implemented. Any future updates to N.I.C.E. guidance should be consider by policymakers and the
leadership of H.C.S. in due course, as we would expect they do when updates are made across all
areas of healthcare. That is particularly important given the default position on N.I.C.E. being taken
by H.C.S. as outlined by the Health Advisory Board. I am not asking Members to agree to guidance
which does not yet exist. That would clearly be inappropriate. Reinforcing that clear position now
also means that should this proposition be adopted then a robust business case can be brought forward
as part of the Government Plan process based on a clear position. We do not need to wait for the
updated guidance, which is more than a year away, to move forward. Such delays would be
unnecessary and could mean patients having treatment delayed even further. Taking action and
improving access as soon as possible should be a priority. Adopting the N.I.C.E. guidance that is in
place today enables this to happen. At this point, I would also mention that I want to say thank you
to the previous Minister for Health and Social Services for her time and support and working with
me on this in our previous roles in Government. I spent a lot of time speaking to a lot of different
people about this and was really pleased to get to the point that the Minister dedicated resources over
the past year. The first meeting, when I looked back, was in April last year. Policy officers were
working on it, researching, consulting and then there was a commitment from the previous Minister
to bring forward a business case as part of the next Government Plan. Obviously things change,
which is why I am here today with this proposition. Turning then to the cost, before I then finish.
Estimating the potential cost of the new funding model, as proposed, is not an exact science. As
individuals and cycles will each have an element of personal circumstances which could impact the
cost. However, estimates can be made. Last year, 68 cycles of I.V.F. were facilitated via the A.R.U.
for 51 unique couples. Prior to that, the 10-year average was around 129 cycles per year. Using the
cost cited in my report, the funding required would be between £387,000 and £755,000 if all of those
cycles were to be funded, which would be unlikely as not all would qualify. The Minister for Health
and Social Services’ amendment very kindly provides a useful calculation based on the Scottish
system where the N.I.C.E. guidance is implemented in full. It is more appropriate and, I do not mind
saying, does the best job yet in estimating the potential cost. By comparing Jersey’s population size
with Scotland, I estimate that there would be around 87 cycles of I.V.F. eligible for funding in Jersey
annually if access criteria were applied which mirrored those in Scotland. On that basis, and using
figures again from the Minister’s amendment, it is estimated that the increase in funding required
would be around £617,744 a year. That is a potential average of £7,100 per full cycle, including
frozen embryo transfer. That is potentially giving people more than one opportunity in a cycle to get
pregnant. That works out as £21,300 for 3 full cycles. Split that between a couple over, say, 2 years,
to allow for the cycles to take place over a reasonable time period, and that is just over £5,000 worth
of benefit per person per year. I think it would be worth every single penny. I am conscious that I
have spoken for a long time and thrown a lot of information at Members, but I do thank everyone for
their time and attention and would repeat my offer to go into further detail in my closing speech if
required. Thank you.