Last summer the National Infertility Awareness Campaign (NIAC) launched its most comprehensive patient survey to date. The aim of the survey was to identify problems faced by people seeking NHS-funded fertility treatment. Questions were designed to look at regional variations in provision, eligibility criteria, patients' experiences of how helpful and knowledgeable their GP had been, the knock on effects of infertility (in terms of people accessing other NHS services as a result of their infertility problems) and the availability of patient advice. The survey was distributed to a number of fertility clinics and was made available to access online. The survey closed in November 2011 and a total of 456 responses were received.
Why did we do the survey at that particular time?The changes to the NHS in relation to the commissioning of its services were being decided at the time. NIAC was lobbying hard for IVF to be commissioned on a national level under the remit of the new NHS Commissioning Board (NHSCB) rather than local commissioning as we have now, which clearly isn't working – never has!
Sadly, it was recently announced that responsibility for commissioning fertility services, such as IVF, will indeed rest with local GP-led Clinical Commissioning Groups (CCGs). Given that commissioning will be GP-led, the results of questions relating to GPs' attitudes were particularly important and timely. We asked whether the respondents' GP had been sympathetic, helpful and/or knowledgeable and the results, whilst in some ways encouraging, also are concerning.
Seventy-eight percent of respondents indicated that their GP was sympathetic and helpful, which is very positive. However, almost 50 percent of respondents also said that they felt their GP lacked the necessary knowledge of infertility and the treatment options available to provide an effective service. This could explain why some patients with fertility issues perceived their GPs as unsympathetic (22 percent).
Voicing her support for the survey, Dr Clare Gerada, the chair of the Royal College of General Practitioners (RCGPs), said she was surprised and worried by the findings. '[GPs] should be supportive because infertility is a hidden pain. That's something we need to do something about and ensure that the profession is sympathetic', she told the Guardian (1).
That was good to hear. It is absolutely vital that all GPs are fully informed about infertility treatment, including IVF, and the options available when the commissioning of IVF switches to local commissioning groups next year.
The survey also showed that 81 percent of respondents said infertility had had an impact on their personal and/or professional life. One respondent said as follows: 'Every aspect affected. The daily routines of life are no longer enjoyable or simple for that matter'. The emotional impact of infertility is often forgotten and the stress of IVF is unavoidable. What is avoidable, however, is the exacerbation of these effects through reductions to services and long waiting times. Thirty-four percent of respondents had sought other NHS services in the process, such as counselling services or treatment for depression. It is in the best interests of the patients and commissioners to reduce the demand for these other NHS services, thereby saving the health service a considerable sum of money.
Other key findings from the survey were that the South East has the longest waiting times; and age was perceived to be the biggest barrier to accessing treatment. Out of the 62 respondents who identified age as a barrier, 55 percent were aged 39 or under. Of the 38 percent of respondents unable to access fertility treatment on the NHS, nearly a third were from the South East. Furthermore, 49 percent of respondents who were eligible for NHS treatment, but chose to have private treatment, did so because of long waiting lists.
There has been some really positive funding news recently with three shadow CCGs either having increased or reinstated funding for IVF treatment in their local area. This is welcome news and demonstrates the potential for improvement within the new health system. Drawing on these recent, positive examples, we aim to encourage others to make similar steps forward towards full implementation of the National Institute for Health and Clinical Excellence guideline.
It is NIAC's hope that the conclusions from our survey will be considered during all future policy decisions relating to fertility. If we are to provide a truly equitable service we need to ensure equality of access across the country to three full cycles of IVF; standardised access criteria and improved access to information for patients. Alongside those, there needs to be a significant drive towards improving knowledge of infertility.
At the moment, our main concern stems from the level of preparation within each CCG as our survey results have led us to have some concerns about the readiness of these groups to take on this role. All GPs needed to be better informed about infertility as they are responsible for referrals and we want to help them do this.
Infertility treatment has for too long been seen as a low priority, failing the one in six couples who live with the devastating impact this illness has on their lives. NIAC will continue to campaign for fair and equitable access to IVF and ICSI on the NHS, because those suffering from the disease of infertility have the right to expect the chance to try to have a healthy baby of their own.