Oireachtas Joint and Select Committees

Wednesday, 26 May 2021

Joint Oireachtas Committee on Health

Rare Diseases: Discussion

Dr. Sally Ann Lynch:

No, it was purely due to staffing issues and nothing to do with Covid. That is a shame. In the NHS every centre does outreach clinics. One of my registrars has done a survey on all the queries coming in to us recently and most of them come from outside CHI. We see adults as well and we do foetal medicine. Most of the queries are coming in to us from adult physicians or foetal medicine physicians but we cannot do those peripheral clinics any more. Every person trying to access that type of care now needs to travel, as there is no regional access. We provide telephone and video appointments. The only thing is that it can be difficult for us to collect samples if we need them. Covid has messed up trying to get blood samples from patients who do not have a clinical appointment. It is not as easy as it sounds.

In terms of education, I have approximately 11 little animation videos on simple things to do with genetics for parents, healthcare professionals and everybody. We do our bit. I have a little microslide for GPs. One of my colleagues, Eileen Treacy, did a study with a number of GPs last year that was published to try to improve education about rare diseases and to emphasise the use of Orphanet, which is a great website for GPs and healthcare professionals. There is loads of stuff online but there is only so much people can capture from online. Online will be the way forward. If there were more of us we would be able to avail of more educational opportunities. I lecture medical students and my colleagues do too because that is going to be critical. None of us are lecturing nurses as we just do not have the facility to broaden that. Hub and spoke would probably be the preferred model because it is a subspecialty, but it would be nice to be able to-----