Red tape and long waits

We had our first consultation at Guy's hospital in June 2008 and were dismayed to be told that PGD IVF cannot happen very quickly: first a test based on the individual couple's genes needs to be developed, funding needs to be sought from the NHS, and there are waiting lists to join. At the end of our day in London we felt deflated to learn that we would not be beginning our treatment until at least the early part of 2009. Eight whole months away. It felt like a lifetime.

We tried to plan lots of fun things to do to make the time pass more quickly. We went to gigs, on holiday and tried to make the most of being a childless couple. Two months passed after the appointment and I rang our Primary Care Trust to see if they had any news on the funding application. They told me that they had not received an application from Guy's for us. Puzzled, I contacted Guy's and was stunned to hear that they had not even begun on our paperwork. Did they not realise that every day feels like a week when you're waiting for your much-longed for baby? Or at least a chance at having one.

So, totally disillusioned with Guy's we investigated CARE, a private clinic much closer to home. There are only a handful of clinics in the UK that offer PGD IVF, so choice is very limited. After visiting CARE we were convinced that this was the clinic for us and we promptly changed over to them. We had some concerns as CARE do not develop the PGD test in-house: rather they are affiliated with a lab in the US, Genesis Genetics, which develops the PGD 'probe' for them. But we came away reassured that they were very experienced, and that they actually cared.

So now we had to sort out the funding. This was an absolute nightmare. Our GP was unhelpful, unfriendly and lacked knowledge on PGD. Luckily, our Genetic Counsellor from the local health authority co-ordinated the funding application for us and after a couple of months, the form was submitted. This was October. A few weeks later we heard we had been refused funding.

Devastation again. How much more bad news were we going to get this year? You start to get a bit of paranoia that someone has it in for you, that nothing is going to go right. We were fortunate in that we could afford to fund a cycle ourselves - it costs around £7k, so it's a struggle, but we had recently sold H's old house, so could use the proceeds from that. However, I was determined to appeal the decision.