Clinical Genetics Division
We have introduced a strict triage system for new referrals to help manage our long waiting lists.
- Priority will be given to those families at highest genetic risk
- The referral is for a condition that we can see in our clinic.
- Referral letter meets referral guidelines & all information is available before the clinic appointment, sometimes by asking for additional tests
Unfortunately since February 2012 we have had to restrict our services. We did not take this decision lightly but we do not have enough staff to see everyone referred.
A table showing our staffing levels compared to other European countries is available.
In 2009 the Minister of Health signed the EU recommendation on management and care of individuals with rare diseases. This will come into place in 2013 and is relevant to NCMG as 80% of rare diseases are genetic. As part of our response to this recommendation we have prioritised those patients with rare disease. We found that some families, with a high recurrence risk of a serious genetic disorder, were having to wait over one year to be seen. By introducing triage, we now prioritise cases to ensure those with greatest need are seen within 6 months.
We are also requesting certain genetic tests before a patient is seen in genetics. This means that when a patient attends clinic all tests are complete,. In some cases when a test result shows that someone does not carry a genetic condition we write to them to let them know, and so an appointment is not required. We’ve heard from people who have attended our clinic that they prefer this upfront genetic testing to the long wait for an appointment so we will continue this system. However this process is under close review.
Please note: for some conditions, where testing is described as ‘predictive testing’, such as inherited cancer, inherited cardiac disease, and inherited adult neurological disease we only offer testing after an appointment, in accordance with international best practice.