Feature

When systems don’t deliver

Infertility causes enormous distress. So does finding that the NHS can’t—or won’t—help, because you live in the wrong place. Rose and Jonathan Jardine tell their story

We, by postcode and chance, are patients of Warwickshire Health Authority and pay taxes and national insurance contributions like everyone else. Until recently we have had no cause to call on the medical services we help fund, but have always believed that we would have equal access should we need care. We had no idea of the disastrous effect our postcode would have on our lives.

Over the last 30 months we have suffered the agonising condition of infertility. We were delighted to receive a referral to the Centre for Reproductive Medicine at Walsgrave Hospital in Coventry (a new centre built using charitable contributions). Along with the appointment letter and an encouraging brochure, came a treatment price list.

This led us to study the Report of the Fifth National Survey of the Funding and Provision of Infertility Services, and we were alarmed to discover that West Midlands Region is the worst place to live in mainland Britain if you need infertility treatment.¹

The recent study Infertility Into the Millennium,² and a Commons debate,³ also focused on the plight of patients in our area, and it was stated that: ‘The West Midlands has one of the worst rates with only 3.5 treatments per 100,000.’

Effective Healthcare Bulletin recommends 40 cycles of IVF treatment per 100,000 of the population — a standard not yet achieved by any region.⁴ Although the national survey found that almost all regions are increasing infertility funding, a few, notably the West Midlands, are reducing their spending. Within the West Midlands, Warwickshire Health Authority provides no modern assisted conception treatments.

Infertility affects one in six couples nationally. The condition inflicts profound psychological and emotional strain on couples, making it a major source of depressive illness and psycho-social morbidity. Heavy demands are placed on medical and social services, personal relationships suffer, and days are lost in the workplace.^{2 5} Research has shown that the mental health implications of infertility compare with those of cancer sufferers. A recent study found that at least one in 20 infertile patients considers suicide.⁶

When a health authority refuses to respond to this health need, it creates a legacy of powerless couples unable to raise a family; they feel marginalised in their local community, and incur the mental health costs of suffering from a stigmatised illness. Clinicians prevented from treating patients because of HA policy also experience frustration, stress and a sense of failure.⁷

The Patient’s Charter promises to provide treatment according to need, not ability to pay, and infertility is a health need. In June 1997, the US Supreme Court defined reproduction as a major life activity, ‘central to the life process itself’.⁸ On this definition, to refuse infertility treatment is to discriminate against a large group of patients.

IVF has been a routine treatment for infertility for 20 years. The chance of conception in one month for an average, fertile couple is 20-25 per cent, and IVF success rates are often equal or superior to this.² Excellent results can be achieved if the patient is investigated quickly and referred for appropriate treatment. Delaying referral or progression of patients to the appropriate treatment reduces the likelihood of success. It also wastes NHS resources and patients’ valuable time. Improvements infertility treatment make its denial to patients even less acceptable. Lord Robert Winston recently commented that ‘as treatment for infertility continues to improve it becomes even more unjust to deny parents the family that they deserve.’

We presented these arguments to Warwickshire HA, and asked why it has ignored both the treatment guidelines of the NHS Centre for Reviews and the Royal College of Obstetricians and Gynaecologists guidelines on infertility.^{4 9}

The response was disappointing. Alan Mills, acting chief executive, acknowledged both the effectiveness of modern fertility treatments and the distress caused by infertility. Yet he defended the HA’s policy, which is to diagnose cases where a treatment such as IVF would be effective, and then ask patients to pay for further treatment themselves. His response made clear that fertility treatment is a low priority, and therefore to fund it — regardless of its proven effectiveness — would be to fail the statutory and legal obligation of the HA to stay within a balanced budget.

He was not willing to say why the HA gives fertility treatment such a low priority, but we believe the unfavourable perception of fertility treatment held by many of the general public is responsible for this decision. The priority of fertility treatment must be reassessed so that the present situation, where in some areas effective treatment is only available to those able to pay, does not continue.

Regional variations in treatment, and questions about how to change the policy decisions of individual HAs, are at the core of many contemporary debates about treatment provision. Health authorities blame the government for putting them in the position of having to make ‘hard and unpalatable choices between treatments’, while faced with tight budgets. These budgets are the result of central funding decisions and mismanagement that led to overspends in previous years. The Department of Health, while not seeking to infringe local autonomy, wants HAs to explain and change treatment priorities that deviate from the national norm. In the meantime, patients like us, stuck between these competing interpretations, are uncertain who is responsible for refusing us NHS treatment for our genuine health need.

In the Commons in May this year, public health minister Tessa Jowell said: ‘We are determined to deal with the unacceptable variations in access to services, and to build a national health service that provides fair access to clinically effective services, including fertility services, where people live.’ In September, Warwickshire HA chief executive Alan Mills wrote: ‘If...there is a national policy that IVF will be funded we shall follow it,’ although he did point out that such a directive would take funds away from other ‘groups of patients’.

Is there hope for the infertile then? It would be unwise to be too optimistic. If the DoH intervened in the infertility treatment policy decisions of individual HAs, then the DoH (and, by default, the government as a whole) would become responsible for every decision made by an HA. Anybody denied treatment on arbitrary grounds would look to the DoH for change. Far better for the government to keep responsibility — and blame — devolved to the unelected, unaccountable health authority boards.

In the same Commons debate, the strategy for ensuring ‘national consistency’ was to be a series of (non-binding) ‘guidelines to inform local decision making’. Guidelines that encourage wider provision of fertility treatment have been in existence for some years.^{4 9} They have been ignored. As Colin Startup, civil servant at the NHS Executive put it, treatment decisions ‘are the responsibility of individual authorities’. There is no evidence this will change in the foreseeable future.

We have submitted research evidence to the strategy committee of the South Warwickshire Health Council. The council has clearly stated in a letter to us that it has no obligation to offer all patients clinically effective services.

To date we have yet to conceive. We are undergoing further diagnostic investigations and trying to save enough money to cover the substantial costs of infertility treatment.