Ms Vicky McGrath:

The multidisciplinary team would be a godsend. It would provide one-stop shopping for the patient and see patient-centred care beginning to be realised. It is not always easy to achieve but it would be useful and would enable patients to know that their healthcare providers are talking to one another and can see the whole person again, that it is not just their sensory issues or whatever the issue might be. It also provides a patient and a family with one point of contact.

We have a system that is transitioning towards patient-based needs and that is what is needed. People with the same diagnosis and the same genetic condition will have different challenges. They will have different needs and we must make sure that we are listening to the patient and that we are addressing the specific needs of patients and that it is not a box-ticking exercise but is customised for individual patients.

One of the issues I found when we were looking at the effect of coronavirus on the rare disease community relates to the use of telemedicine and consultations online. Some patients really liked it and others did not. It is down to that kind of level of personalised preferences being allowed and the fact that today I like telemedicine but next week I might not. I know it makes the system a little more complex to run but it needs to be done because this is how we ensure that the most vulnerable in society are being listened to, are being heard and are having their needs met. If we continue to require that everybody does things in the exact same way it just does not work for lots of people, in particular those in the rare disease community.