Almost three quarters of people living with a rare disease in Ireland are concerned that their condition may deteriorate due to the impact of Covid-19, a survey has found.
A report, carried out by Rare Diseases Ireland, has revealed how the coronavirus crisis is hindering access to routine treatment and care for people with rare diseases.
The findings has prompted Rare Diseases Ireland to call on the Government to ensure the provision of healthcare services for people with rare diseases.
The report heard from 176 people living with a rare condition, their family members and their carers, in the two-week period leading up to May 6.
Report launched, "Living with a Rare Disease in Ireland during the COVID-19 Pandemic" - https://t.co/FCSZUoGM8C— Rare Diseases IE (@RareDiseasesIE) May 21, 2020
YOUR VOICE MATTERS - COVID-19 hinders access to routine treatment and has a detrimental effect on the rare disease community's health and well-being. #ShareYourRare pic.twitter.com/bQWCE3K9hs
It found that 73% of respondents indicated that they were concerned about their own, or their loved one’s, rare disease.
They are concerned about how the condition is deteriorating without access to the usual healthcare, and how an already complex health situation may be negatively impacted if infected with Covid-19.
Three in five respondents believe that Covid-19 is having a negative impact on their mental health while more than half said that scheduled medical appointments have been cancelled.
These included hospital appointments, such as diagnostic/monitoring procedures, surgical procedures and in-patient/out-patient therapies, as well as the cancellation of appointments for physiotherapy, occupational therapy, and speech and language therapy.
One in four said that there were difficulties accessing medicines and medical supplies needed for the condition.
Three in 10 said they have avoided seeking care for complications related to the condition because of concerns over exposure to Covid-19 and confusion over the availability of the usual hospital consultant to provide care.
Vicky McGrath, chief executive of Rare Diseases Ireland, said that many respondents expressed frustration and disappointment with the lack of communication from their health care providers.
She said: “They have been left to cope for themselves and are struggling to know how best to manage.
“For those who previously accessed private healthcare, they are now unsure as to who is managing their care, and are concerned that they will go to the bottom of public waiting lists.
“It is extremely worrying for people and the cancellation of such a large number of appointments will inevitably lead to spiralling waiting lists and extensive delays.
“Many people with rare conditions spend years pursuing a diagnosis in the hope of therapeutic relief, so it is particularly frustrating when we hear of empty hospital beds and under-utilised resources.
It is extremely worrying for people and the cancellation of such a large number of appointments will inevitably lead to spiralling waiting lists and extensive delaysVicky McGrath
“In our collective efforts to combat one disease, Covid-19, it is important that other diseases are not left behind.”
There are an estimated 6-8,000 rare diseases.
They are chronic, progressive, degenerative, often life-threatening, and associated with multiple impairments including cognitive, developmental, intellectual, mental, physical and sensory.
Approximately 300,000 people in Ireland is estimated to have a rare disease.