Dr. Sally Ann Lynch:

Unfortunately, we have approximately 1,800 people waiting. It will be more than that because the IT systems are down at the moment. Approximately 1,900 are waiting to see a consultant and another 800 or 900 are waiting to see genetic counsellors. The genetic counsellor waiting list is better than the consultant waiting list. We do have some patients waiting up to three years, which is shocking. We spend our time trying to validate the waiting lists. We get 3,900 or so referrals per year but we also know that is less than half of the equivalent NHS service. I did a publication with Belfast, Edinburgh, Glasgow, Manchester, and Cardiff two years ago and they were getting an average of two referrals per 1,000 people per year whereas we are only getting 0.84. The reason we are getting that is because we put up road blocks to try to manage our waiting lists. We no longer see people with this, that or the other. We try to get the common genetic diseases managed by other specialists. It is quite difficult to get on our waiting list. We have to be really strict about it because if the waiting list gets to be so bad it is just unmanageable, and it becomes a risk in itself. It is difficult to get to see us in the first place and we are not providing a service compared to our NHS colleagues. We keep doing our best. We deal with 6% to 7% by information letter as opposed to appointments. We are trying to be innovative in that way and with Covid many consultations now are on the telephone or via video. That is working quite well. We spend our time doing capacity plans and trying to ameliorate the issues, but it is impossible.

One of my three colleagues came back from a unit where the population was fewer than 3 million and there were 12 consultants. She has had a baptism of fire where we are just trying to put out fires all the time, as it were, because the risks are so huge and there are so few of us. It is very difficult to forward plan. We do not have the time to do that. We are considered a centre of expertise. We do annual clinical quality assessments, which we always do well at. The tiny number of us who are there do our best to maintain the quality and we participate in the clinical quality assessments within Europe, and Britain is part of it too. We try to keep up to international standards, but it is just not possible to do what my colleagues in the NHS are doing because there are five of them compared to one of me.