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People with rare diseases warn their conditions are deteriorating due to Covid -19

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People with rare diseases in Ireland are worried their condition is deteriorating because of the impact of COVID-19, a new report revealed today.

More than half have had scheduled medical appointments cancelled, while a quarter indicated that they have encountered difficulty accessing medicines and medical supplies, according to the survey by Rare Diseases Ireland.

The report, Living with a Rare Disease in Ireland during the coronavirus 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.

Key findings revealed

•Three quarters 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.

In such circumstances, they are worried how the rare condition may be perceived if intensive care is required. Three in five respondents believe that COVID-19 is having a negative impact on their mental health.

•Cancelled appointments include hospital diagnostic or monitoring procedures, surgical procedures and in-patient or out-patient therapies, as well as the cancellation of appointments for physiotherapy, occupational therapy, and speech and language therapy.

•Accessing medicines: one in four respondents noted that there were difficulties accessing medicines and medical supplies needed for the condition.

•Delaying seeking medical help: three in ten respondents 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, CEO of Rare Diseases Ireland said the Government needs to take into account the full range of people’s medical needs during this pandemic, including those with rare diseases:

“Since COVID-19 arrived in Ireland, we have witnessed huge restrictions on hospitals for everything except COVID-19 and emergency care. The fact that rare disease care is routinely provided by hospital-based consultants within the hospital setting, has had particularly negative consequences for the care of rare disease patients during this pandemic.

“Many respondents have expressed frustration and disappointment with the lack of communication from their health care providers. 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.

“More than half of those who responded to our research study indicated that scheduled medical appointments have been cancelled and I have no doubt that the experiences relayed are reflective of the wider rare disease community. 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. In our collective efforts to combat one disease, COVID-19, it is important that other diseases are not left behind.

“Steps taken by the health authorities in our hospitals and community healthcare facilities at the outset of this pandemic were widely accepted and understood by the rare disease community. However, we are now calling for all hospital and community healthcare services to be reopened for all patients in a safe manner.

“In addition, urgent measures need to be put in place to ensure that such severe service curtailments do not have to be applied in the event of any possible future resurgence of the virus, and that treatment and care for rare diseases can co-exist alongside that for COVID-19.”

Online Editors