Since that time, I have had hundreds of emails and calls from patients who were trying to decide whether to wait and see what their PCT provided. For some, given the importance of the age of the woman in the success of treatment, the decision was whether they should not wait and should start private treatment to try and give themselves the best chance of success. However, if they began doing so, when their local PCT started funding IVF, would they be refused treatment because they previously went privately? A huge dilemma, possibly affecting the rest of their lives. What would you do?
The recent survey conducted by the All Party Parliamentary Group on Infertility (APPGI) and the National Infertility Awareness Campaign (NIAC) has provided valuable information for the continuing campaign for a fully funded, comprehensive range of infertility treatments. It has also provided valuable information for the Department of Health so that they are aware of what is happening around the country. Finally, it has provided information for patients and their representatives such as Infertility Network UK in that we can now let patients know what is happening (or not) where they live. That is, of course, for those patients whose PCT was one of the 70% who responded. This is an excellent response rate, but the reality is that we did not hear from 91 PCTs so we still don't know what they are doing. However, we plan to find out! Their plans are of equal importance to the thousands of couples whose lives and futures are in their hands.
Although our survey showed that progress has been made in providing one cycle by many PCTs, this has been accompanied by an increase in the greater use of eligibility criteria to restrict access to treatment. For example, over half of the PCTs have a policy on maximum age for the woman, but those policies vary enormously. Only 35% of the PCTs use the maximum age of 39 as recommended in the NICE guidance.
The Secretary of State for Health stated that local priority should be given to couples who do not have any children living with them. 102 of the responding PCTs said that they had a policy on existing children, with 58% of them barring all couples that have children from either partner, adopted or otherwise. Patients are particularly concerned that it appears that some PCTs are reducing the funding they currently provide - that was certainly not meant to happen. There is also more IVF being funded than ICSI (intracytoplasmic sperm injection) - that also was not meant to happen. Waiting lists are far too long overall, and this needs addressing urgently.
Please do not misunderstand me, the APPGI and NIAC are generally encouraged by the progress being made, but we urge the government to take action to address the areas of concern I have mentioned, in particular waiting lists, disinvestments in IVF/ICSI cycles and in respect of those PCTs not yet implementing the NICE guideline. We also are calling on the government to give a clear indication to PCTs of exactly when it expects the remaining two cycles (as well as the other recommendations in the NICE guideline) to be implemented.
I urge the government to consult with the relevant organisations, including patient representatives, with a view to setting centrally agreed criteria to overcome the current inequalities that still exist. The medical profession want it, and I'm sure PCTs would be grateful for the guidance. Most importantly, we should make this happen for the one in seven couples affected by infertility who have had their lives put on hold for the last year or more. These couples have suffered enormously, not just because of the current inequitable situation, but simply because they live in the wrong place at the wrong time.