RCN position statement on infertility provision for the UK 2015
RCN position
1. The RCN supports full implementation of the National Institute for Health and Care Excellence (NICE) guidelines including the recommendation that at least three full treatment cycles are made available to couples undergoing In Vitro Fertilisation (IVF) treatment regardless of location within the UK.
2. Clinical, social and lifestyle access criteria should be implemented on an equitable basis.
3. The RCN supports the need to raise awareness among nurses and midwives of the social-political challenges in provision of fertility services across the UK. Nurses should be equipped with leadership skills that enhance their ability to have a positive impact on education and service commissioning at local level.
Introduction
Since the birth of Louise Brown in 1978, it is estimated that more than five million babies have been born worldwide through in vitro fertilisation (IVF). Despite one in seven couples in the UK having problems conceiving and the social and psychological effect this can have, the provision of NHS infertility services has remained varied and inequitable throughout the UK. As a result, many people have little option other than to explore treatment in the private sector, which at present accounts for about 60 per cent of IVF treatments in the UK (Human Fertilisation and Embryology Authority (HFEA) 2013).
In 2008, at RCN Congress, a resolution was passed calling for the RCN council to lobby for widespread implementation of the NICE Fertility Guideline 2004 (NICE 2004). As a result of this motion, and the reiteration of NICE’s recommendations in 2013, the RCN is committed to supporting this ongoing important work.
The medium for supporting this commitment is via the RCN Fertility Nursing Forum, the member focused vehicle. The forum works with nurse, midwife and healthcare assistant members who work in fertility services and associated services across the UK. They also work with Infertility Network UK (INUK), the patient led organisation whose key objective is to improve access to NHS treatment. The forum is an active supporter of Fertility Fairness formerly the National Infertility Awareness Campaign (NIAC), created at National Fertility Week in 1993, and responsible for recent campaigns. NIAC is supported by a range of professional bodies and patient groups, with the RCN Fertility Nursing Forum being represented on the steering committee. Fertility Fairness (NIAC) has campaigned, for over 20 years for equal access to treatment in the UK based on the full implementation of the NICE 2013 guidance.
https://fertilitynetworkuk.org/access-support/nhs-funding provides details of the findings and issues in England, Wales, Scotland and Northern Ireland.
Current situation
In 2013, NICE updated the Fertility Guideline originally published in 2004. The recommendations in the revised document include reaffirmation that three full cycles IVF should be available on the NHS for women aged up to 39 inclusive. In addition NICE recommended that one full cycle of IVF should be available for women aged between 40 and 42 who have never previously had IVF treatment; there is no evidence of low ovarian reserve and there has been a discussion of the additional implications of IVF and pregnancy at this age. A full cycle of IVF is considered to be one which includes the transfer of any viable embryos which have been frozen and stored after the fresh cycle. (NICE 2013). Over the past twenty years entitlement to NHS funded treatment has ranged from no funded treatment to a full three cycles, often depending on local policy. While some NHS services have commissioned services based on the guidelines, many continue to fall short of the recommendations. The consequences for those unable to conceive naturally remains a consistent inequitable access to NHS funded IVF and the financial burden of self funding their fertility treatment.
Whilst national guidance now exists in Scotland, Wales & N. Ireland, (*See below) there still appears to be a ‘postcode lottery’ approach to treatment in England, where both the number of cycles funded and the criteria for eligibility is inconsistent. It would appear that many women and partners are no better off than they were five years ago and are still fighting for the funding they are entitled to.
A recent survey of England’s 211 Clinical Commissioning Groups (CCGs), by NIAC (NIAC 2013) found that in many cases these cycles were not ‘full’ cycles as defined by the NICE guideline. CCG funding was identified as:-
3 cycles funded by 25%
2 cycles funded by 25%
1 cycles funded by 50%
*In Scotland, from July 2013 all Health Boards are expected follow the same criteria, as determined by NHS Scotland. https://fertilitynetworkuk.org/access-support/nhs-funding/scotland/
In Northern Ireland, infertility treatment is limited to those with a medical cause for infertility. This decision following a public consultation on the criteria for to publicly funded fertility treatment. https://fertilitynetworkuk.org/access-support/nhs-funding/northern-ireland/
In Wales, Specialised Services Policy: CP38 Specialist Fertility Services published in 2013 states:
“In November 2009 the Minister for Health & Social Care announced that patients who meet the access criteria and where the woman is aged less than 40 at time of treatment will be entitled to two NHS cycles of treatment from the 1st 2010. Following review of the updated NICE fertility guidance in 2013, the policy has been updated to offer one NHS cycle of treatment to patients who meet the access criteria and where the woman is aged between 40 and 42 at time of treatment.” (5:13 Welsh Health Specialist Committee) http://www.wales.nhs.uk/sites3/Documents/898/CP38%20Specialist%20Fertility%20Services%20v6%200.pdf
NHS funded fertility treatment is important
In order to maintain an equitable and fair fertility service across the UK, access to NHS funded treatment is critical. Current evidence suggests that 4 in 10 treatment cycles are funded by the NHS (HFEA 2013). For those who do not meet NHS criteria, the cost of private treatment can vary from between £4,000 - £10,000, depending on factors including the type of procedures and the drugs used. The high cost of IVF in the UK is encouraging many couples to seek treatment abroad, which also has long term consequences for the NHS. Furthermore, private treatment may not be an option for those on low or medium incomes, adding to access inequalities.
In England, CCGs continue to use varying criteria when funding IVF, including:
- no children from current or previous relationship
- one partner has no children / no children living with couple
- no previous sterilisation (in either partner)
- priority to those with no children
- age restrictions on both partners
- BMI
The importance of elective Single Embryo transfer (eSET)
One of the challenges associated with the success of fertility treatment has been the management of multiple births. It is recognised internationally that multiple births are one of the greatest complication arising from IVF, because of the increased risk to the health and welfare of mothers and babies. This includes the cost of antenatal care, complicated vaginal deliveries, along with an increased risk of caesarean section and associated with more frequent and longer maternal and neonatal hospital admissions (Braude 2006). This can result in higher costs to the NHS with the ‘care’ cost of a twin pregnancy estimated at £9,122 being significantly higher than the cost of a singleton pregnancy - currently estimated at £3,313. (Department of Health (DH) 2009). Babies from multiple births are also more likely to need neonatal care and have ongoing health problems.
The updated NICE guideline (NICE 2013) recommends the use of elective single embryo transfer, and the multiple birth stakeholders’ group, of which the RCN is a member, along with other professional bodies and patient groups, are supporting and advocating the implementation of changes in practice towards elective single embryo transfer being the norm, in the hope of reducing the number of higher order implants (Hamilton 2007).
Reproductive tourism
There has also been a rise in the popularity of people choosing to go abroad for IVF treatment (Culley et al. 2011). The main reasons include the cost of treatment, along with dissatisfaction with the services and a shortage of donor egg availability in the UK. One of the key challenges around fertility treatment tourism is the varied and differently regulated services outside the UK, including the use of eSET. The policy of eSET has been widely implemented in Northern Europe, but is not applied in other regions and continents. The main consequences for the NHS, could be the need to support a women with a multiple pregnancy, birth and postnatally, which, as outlined previously has a number of possible complications associated with it. There are also risks to the women, such as Ovarian Hyper stimulation Syndrome, on their return to the UK, the NHS may have to bear costs of treatment.
The role of registered nurses working in fertility services
Nurses are key health professional in the provision of effective fertility treatment, supporting women and men undergoing IVF and using their full range of skills to provide care.
Nursing practice: The nurse’s role includes both psychological support for prospective parents and the utilisation of extended clinical skills, including egg retrieval and the transfer of embryos, to ensure continuity of care for women.
Informed choice: When prospective parents are exploring the possibility of IVF, it is crucial that they are fully informed regarding the options and implications of treatment and supported psychologically throughout the process. This is of particular importance when fertility treatment does not result in a successful pregnancy.
Commissioning services: Fertility nurses have a key role to play in supporting best practice around commissioning of fertility services. They can contribute to the overall understanding of the issues by ensuring that concise, accurate, evidence-based information is disseminated and readily available to commissioners, and all who may engage in local service provision. A report by an Expert Group on Commissioning NHS Infertility Provision identified that ‘a lack of knowledge and expertise in commissioning fertility services was a barrier to compliance with NICE guidelines (Infertility Network UK 2013).
Nurses as leaders: Nurses should also be using leadership skills to actively understand the socio-political dimension of access to, and provision of treatment locally, as well as lobbying nationally to support best practice.
Nurses as policy makers: Changes to local policies are not always readily accessible or comprehended and the extent of consultation prior to changes can vary considerably. Nurses can use their links and exert influence on commissioners to ensure that policy decisions are conducted in a fair, open and inclusive manner.
As a crucial first step to achieving the above objectives, nurses should aim to familiarise themselves with local CCG’s assisted conception policy, the timings of any review and how this compares to NICE’s 2013 recommendations. Differences in criteria can be discussed with the named nurse representative of the CCG Governing Board or other Board members as appropriate.
With regard to enhancing skills and knowledge to support best practice for nurses specialising in fertility services, the RCN developed competences (RCN 2011) and an education pathway (RCN 2012), which will enable the development of the skills set required to ensure improvements in fertility services across the UK.
Conclusion
To ensure equality of access to all those seeking treatment, the RCN supports full implementation of the NICE guidelines including the recommendation that at least three full treatment cycles are available to couples undergoing IVF treatment.
The nurse plays a central role in ensuing this position is realised. In order to achieve this, nurses need to understand and interpret the available evidence, whilst continuing to be aware of, and use the systems available to lobby (locally and nationally) for fair and equitable treatment for those who suffer with infertility.
References
Braude P (2006) One Child at a Time:- Report of the Expert Group on Multiple Births after IVF http://ifqtesting.blob.core.windows.net/umbraco-website/1311/one-child-at-a-time-report.pdf
Culley, L. et al. (2011) Crossing borders for fertility treatment: motivations, destinations and outcomes of UK fertility travellers. Human Reproduction, 26 (9), pp. 2373-2381
Department of Health (2009), Reference costs 2006-2007London: DH Hamilton M. (2007) Multiple Births in the United Kingdom – a consensus statement. Human Fertility, June 2007: 10(2):71-74
HFEA (2013) Fertility treatment in 2012:- Trends and Figures https://www.hfea.gov.uk/media/2080/hfea-fertility-trends-2012.pdf
National Institute for Clinical Excellence (2004) Clinical Guideline Fertility: assessment and treatment for people with fertility problems, London
National Institute for Health and Care Excellence (2013) Clinical Guideline 156 Fertility: assessment and treatment of people with fertility problemshttp://guidance.nice.org.uk/CG156
NIAC (2013) CCG List & Scope of Services
Infertility Network UK (2013) Primary Care Trusts Liaison Project 2009-2012 Final Report on Findings April 2011 - October 2012
Royal College of Nursing (2011) Competences: Specialist competences for fertility nurses
Royal College of Nursing (2012) An RCN training and education framework for fertility nursing
Contact for further information:
Carmel Bagness, Professional Lead Midwifery & Women's Health,
Nursing Department, Royal College of Nursing
20 Cavendish Square | London W1G 0RN
0207 647 3761 | carmel.bagness@rcn.org.uk | www.rcn.org.uk
