MEDICAL NEEDS NOT MET

ALMOST three quarters of those who have a rare disease themselves or have a loved one suffering from a rare condition are concerned their condition, or that of their loved ones, may deteriorate due to the impact of COVID-19 on their treatment and care, new research has revealed.

The research, which was carried out by Rare Diseases Ireland, showed that over half of those surveyed had scheduled medical appointments cancelled, while a quarter (26 per cent) indicated that they have encountered difficulty accessing medicines and medical supplies.

Against this backdrop, it is perhaps unsurprising that almost two-thirds (62 per cent) believe that COVID-19 is having a negative impact on their mental health.

The report, Living with a Rare Disease in Ireland during the COVID-19 Pandemic, has highlighted how COVID-19 is hindering access to routine treatment and care for people with rare diseases, and is having a detrimental effect on their health and well-being.

The research provides a snapshot into life today for people with rare diseases, with responses from 176 people living with a rare condition, their family members and their carers, from across the island of Ireland. It was undertaken by Rare Diseases Ireland, the national alliance for rare disease voluntary groups, in the two-week period leading up to May 6.

Vicky McGrath, CEO of Rare Diseases Ireland, says the Government needs to take into account the full range of people’s medical needs during this pandemic: ‘We are now calling for all hospital and community healthcare services to be reopened for all patients in a safe manner.’