Devastating – infertility survey reveals heartbreak behind decision to withdraw NHS funding for IVF

Stop press – decision delayed to 6th August to review Dept of Health guidance on ‘fair and equal’ access to fertility services 

Cambridgeshire people have shared their experiences to persuade the Cambridgeshire and Peterborough Clinical Commissioning Group (C&PCCG) to reverse the IVF funding cut.

“Devastating” is how infertility has been overwhelmingly described by respondents to an in-depth survey commissioned to assess the impact of withdrawing all funding for specialist fertility treatment in Cambridgeshire.

In 2017 Cambridgeshire and Peterborough Clinical Commissioning Group (C&PCCG) became one of only five CCGs out of 208 in England that provides no funding for IVF treatment. It agreed to review the decision in 2019 and said it would take into consideration the impact that its decision has made.

No significant impact on budget

Estimates suggest that less than 150 people in Cambridgeshire would be eligible for NHS funding for IVF each year – equivalent to 0.03% of the total CCG budget – so the cutting of one cycle of funding has had no appreciable impact on finances.

The survey attracted 300 responses – two thirds directly affected by infertility and a third who had seen first-hand the impact of infertility on friends and family members.

75% of those directly affected by infertility said they needed treatment but weren’t able to afford it. Unlike other forms of private healthcare IVF is not covered by insurance policies.

Impact on mental health 

Responses described levels of stress, which resulted in admittance to hospital, loss of jobs, treatment for depression and mental health, breakdown of relationships, isolation and the worsening of other medical conditions:

“It instilled distance between me and friends who had children as I struggled to cope emotionally. I felt I was failing our families and parents who were so looking forward to becoming grandparents. My life focus became only about conceiving, my desire to succeed in my career waned and I was less creative, less productive in my role.”

“It is a big strain on your relationship, the worry and stress of all the tests and still not knowing the outcome. Most importantly trying to lead a normal life around others that don’t know what you are going through.”

“It put huge pressure on my marriage. I also lost lots of friends along the way because they were having their own families or they didn’t know the right things to do or say to support us. Health wise the waiting game caused problems with endometriosis/PCOS. I lost my job (in the NHS) so financial pressure and stress all took its toll on my mental health.”

The survey also revealed how the decision to remove access to IVF has meant the whole fertility service has suffered. Hospital gynaecologists, stretched for resources have had to prioritise cancer and other treatments over advice that might improve couple’s chances of conceiving naturally.

Left in limbo 

Two thirds of the patients referred for fertility testing after 2017 have been left in limbo – either still waiting for results or unable to access treatment.

Waiting times for appointments and delays in diagnosis can have serious consequences as fertility is time sensitive – egg quality and quantity declines rapidly once a woman reaches the age of 35.

All the patients requiring treatment that took part in the survey had been made to wait at least two years after seeing their GP before they were referred for testing – regardless of age or medical history – with a further wait for first appointment. This means the chances of success are further diminished and years wasted.

Cambridge home of first IVF clinic

Bourn Hall, the world’s first IVF clinic, has over 40 years of fertility experience and led research into the hormone-based drugs used in treatment. Doctors at Bourn Hall are acutely aware that successful treatment involves the body, mind and heart.

Dr Thanos Papathanasiou, lead clinician at Bourn Hall Clinic explains: “Although stress does not cause infertility it can impact the hormones used to control reproduction in both men and women. A smooth pathway from diagnosis to treatment and beyond can remove this stress and provide a resolution for patients. It can enable them to move on from this stage of their lives even if this doesn’t ultimately involve a child.”

Alternative ways to improve patient outcomes

Just across the border, Bourn Hall provides a fully integrated fertility service in Norfolk with direct referral from the GP. This has seen an increase in natural pregnancies, shorter waiting times, reduction in costs and improved outcomes. The outcomes include births but also consideration of alternatives such as adoption, fostering and support for resolution, including counselling to give closure and provide help to move on.

Dr Papathanasiou comments: “Giving good advice at an early stage supplemented by minimal interventions helps 30% of the couples we see in Norfolk conceive naturally. Of the remaining patients some will require surgery and others IVF treatment.

“We can make these types of decision within 6 weeks of a patient referral. Only a third of those requiring IVF will be eligible for NHS funding but many of the others can be helped with egg and sperm sharing programmes or through financial packages that offer a full refund if treatment is unsuccessful.”

When NHS funding was available in Cambridgeshire, and the full National Institute for Heath and Clinical Excellence (NICE) guidelines were implemented, treatment at Bourn Hall resulted in eight out of ten NHS patients having a baby.

Cost-saving 

Following early sight of the survey results, Bourn Hall has made a proposal to the C&PCCG to offer an integrated fertility pathway from GP to resolution and demonstrated that the cost-savings achieved can be used to mitigate the cost of reinstating NHS funded IVF treatment.

Dr Papathanasiou concludes: “It takes a community to raise a child. This survey shows the impact that infertility also has on friends and family. Sadly, fertility treatment is not always successful but having the opportunity to try is an important part of the healing process. “We hope to be able to use our experience of fertility care to help C&PCCG streamline the service, reinstate NHS funded IVF treatment and improve patient outcomes for all.”

More information about NHS funding.


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