National Infertility Awareness Campaign

Key Messages - Regional Funding

FIND YOUR PRIMARY CARE TRUST

18 Week Commissioning Pathway - Infertility 2008

LOCAL CAMPAIGN MOVES UP TO JOIN WITH NATIONAL INFERTILITY AWARENESS CAMPAIGN

England and Wales

PCT Survey - provision of IVF in England

• NIAC welcomed the publication in February 2004 of a clinical guideline by the National Institute for Health and Clinical Excellence (NICE), which aimed to address the inequalities in access by setting a national standard of service that all patients should expect to receive across England and Wales.

• Amongst other recommendations covering a full range of infertility treatments, the guideline stated that up to three full cycles of in-vitro fertilisation (IVF) should be made available on the NHS to all those meeting agreed clinical criteria. On its publication, the then Secretary of State, Rt. Hon Dr. John Reid MP, asked Primary Care Trusts to make available at least one full cycle of IVF by April 2005.

• At the same time, the Welsh Assembly Government also announced that one cycle of IVF would be made available to eligible patients in Wales by April 2005, and centrally set eligibility criteria for patients seeking IVF treatment were unveiled in July 2005. Whilst NIAC welcomed efforts to ensure patients received equal access to treatment, regardless of where they lived, it has also been keen to raise awareness of the need to ensure that criteria were fair and that progress was made towards implementing the NICE guideline in full.

• In May 2003, NIAC helped to establish an All Party Parliamentary Group on Infertility (APPGI) and continues to provide the secretariat to it. The APPGI’s Statement of Purpose is to raise awareness of infertility issues in Parliament and the need for full implementation of the National Institute for Health and Clinical Excellence's clinical guideline on assessment and treatment for couples with fertility problems.

• To coincide with the publication of the NICE guideline, the APPGI published a report looking at the structures needed to implement the guideline on the NHS in the most cost-effective way. The report recommended that considerable cost savings could be made in implementing the guideline if services were commissioned effectively and unnecessary or inappropriate investigations and treatment were avoided.

• In March 2005, NIAC conducted a survey of Primary Care Trusts (PCTs) in partnership with the APPGI to assess the progress being made across England towards implementing the NICE guideline and the April 2005 deadline. The results showed that significant inequalities in access to NHS funding continued to exist, including wide variations in eligibility criteria.

• A potential move towards single embryo transfer (SET) has now made full implementation of the NICE guideline of paramount importance, both in terms of funding the three full cycles of IVF that NICE recommended, and in ensuring they are funded as quickly as possible. In October 2006, an independent expert group set up by the Human Fertilisation and Embryology Authority (HFEA) to look at reducing the number of multiple births from IVF recommended the introduction of SET for appropriate patients, which NIAC supports. However, the group also concluded that failure to implement the NICE guideline was the single greatest obstacle to its introduction in the UK.

• Following the HFEA's public consultation on this issue, it called for multiple birth rates to be reduced to 10% following a 3-year national strategy. In announcing the development of the strategy, the interim Chair of the HFEA highlighted the need for PCTs to understand the connection between reducing multiple births and access to IVF when making funding decisions. NIAC welcomed the HFEA’s response as it is much more likely that patients will accept a move to SET if they have access to the three cycles of IVF, including FET, recommended by NICE. If a PCT is only funding one cycle, without FET, it is understandable that patients may be unwilling to accept a move that may reduce the chances of that one cycle being successful.

The Department of Health is currently funding a project with Infertility Network UK, a member of NIAC, to help improve access to infertility treatment by encouraging implementation of the NICE guideline. As part of this project, the Minister wrote to the NHS in July 2007 to clarify NICE’s definition of a full cycle, which includes the freezing and replacement of suitable embryos not replaced in a stimulated IVF cycle.

In response to a survey carried out as the first stage of the project, which highlighted different interpretations of what constituted full implementation of the NICE guideline, the Minister also reminded PCTs of the recommendation for three full cycles of IVF to be made available and called for them to move towards providing this level. The letter also announced that the Department of Health would begin monitoring IVF provision across the country and that the project would be extended to include developing standardised eligibility criteria for PCTs to use.

• NIAC remains committed to raising awareness of the need for the Government to take action to address these areas of concern. This includes a call for eligibility criteria to be set centrally in England, as it is in Wales, and for the NICE guideline to be implemented in full as quickly as possible.

Scotland

• The Scottish Executive set up the Expert Advisory Group on Infertility in Scotland (EAGISS) to produce a guideline on the care of infertile couples, which was published in February 2000. The guideline was produced to provide health boards with a model, evidence-based, service that every couple with an established clinical need should be able to access.

• The EAGISS report outlined a range of eligibility criteria and, amongst other recommendations, called for all eligible couples to receive up to three full cycles of IVF treatment on the NHS. Since then, NIAC has been keen to ensure that the framework is rolled out comprehensively across the country.

• However, there is still some inequality of access to treatment, with a number of Health Boards operating criteria that differ from those recommended by EAGISS. There is also considerable disparity in waiting times for infertility treatment, with some couples waiting less than six months and others waiting over 4 years.

• In March 2003, a National Consensus meeting was held to review the eligibility criteria, bringing together stakeholders from across the field of infertility, including NIAC. Amongst other recommendations, it called for the female age limit to be increased to 40 in line with the NICE guideline for England and Wales.

• In June 2005, NIAC helped to establish a Cross Party Group (CPG) on Fertility Services and continues to provide the secretariat to it. The Purpose of the Group is to increase recognition of infertility as an important health need, and understanding and support for effective treatment of infertility; to ensure that these are available on the NHS within the same waiting list rules as other treatments, on the basis of need and within reasonable eligibility, medical and social criteria; and to examine why Scotland is a low fertility nation and make recommendations for improving infertility services in Scotland.

• In September 2005, the recommendations of the National Consensus meeting were put out to public consultation, and both NIAC and the CPG submitted a response. The results are still due, and NIAC is keen to ensure that they produce the best outcome for patients in Scotland.

• The Scottish Government Health Department is currently funding a project with Infertility Network Scotland to help improve access to infertility treatment by encouraging implementation of the EAGISS recommendations and subsequent updated recommendations.

Infertility Network Scotland will begin work with Health Boards in the early summer 2009 to establish exactly what provision each one has in place, the criteria they are using for access to treatment and their pathway process as well as what they have in place to ensure patient involvement. Updates on this project will appear as it unfolds.

Northern Ireland

Update - 21st October 2008 the health minister Michael Mc Gimpsey announced the launch of a public consultation on publicly funded fertility treatment in Northern Ireland - Have Your Say

• The Department of Health, Social Services and Public Safety announced in September 2006 that it would be providing 1 cycle of NHS funded IVF treatment to patients in Northern Ireland.

• NIAC, with the Northern Ireland Infertility Alliance, welcomed the fact that an announcement had been made, but expressed concerns over the reduced number of cycles being made available. It is keen to ensure that progress is made towards increasing the number of cycles.

RAND Study
• NIAC supported the recent launch of a RAND study into the positive impact of state-funded infertility treatment on the UK economy. In recognising the need for the Government to address the economic effects of a declining birth rate and ageing population, there is a clear argument in NIAC’s view for the introduction of a package of measures to boost the birth rate, which would include increased funding for NHS infertility treatment.