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Mum and carer of teenager with rare skin condition issues plea over vaccine

17-year-old Claudia has recessive dystrophic EB and requires daily care.

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Liz Collins, mother and primary carer of Claudia, who has EB (Family Handout/PA)

Liz Collins, mother and primary carer of Claudia, who has EB (Family Handout/PA)

Liz Collins, mother and primary carer of Claudia, who has EB (Family Handout/PA)

The mother and primary carer of a teenager with a debilitating skin condition has pleaded for informal family carers to be included in the Government’s Covid-19 vaccine priority lists.

Liz Collins said her worst nightmare came true when she and her husband Gary both tested positive for the virus.

It left them concerned over who would care for their 17-year-old daughter Claudia, who has recessive dystrophic EB and requires daily care to enable her to live as manageable a life as possible.

She is PEG-fed and requires routine changing of wound bandages which cover her body from the neck down.

Epidermolysis bullosa (EB) causes the skin – both inside and out – to blister and wound at the slightest touch and the only treatment is painful bandaging to prevent infection.

Liz was diagnosed with Covid-19 during the first lockdown and was taken to hospital with Covid pneumonia, while Gary also contracted it a short time later.

They knew that both myself and my husband had contracted Covid and they came every day, wearing their PPE and did over and beyondLiz Collins

Liz said: “It was my worst nightmare – I needed someone to care for my child.

“Claudia’s team of homecare nurses, who clean her wounds and change her bandages, helped us during that time and as a family. We would not have got through this without them.”

Liz is also a parent ambassador and board member of Debra Ireland, the national charity which provides help and support for people with EB, and their families.

Nurses and personal assistants attend the family home in Terenure, Dublin, three times a week to deliver bandage care to Claudia, who is in frequent pain.

Liz spends a significant amount of time each day helping her daughter eat, dress and bathe.

“They knew that both myself and my husband had contracted Covid and they came every day, wearing their PPE and did over and beyond, like changing beds when I couldn’t do it, ordering bandages, collecting medications for me,” Liz added.

“While professional carers are currently receiving the vaccine, informal family carers are not currently scheduled to get it any sooner than the general population, even though they play a vital role as primary caregivers to people who have very vulnerable immune systems.”

The clinical decision by the National Immunisation Advisory Committee (NIAC) is that family carers are covered in other groups receiving the vaccine, but to date, that precise group has not been identified.

Fiona Aherne, advocacy and policy manager in Debra Ireland, said: “This presents huge anxieties for carers of those with EB and other life-limiting conditions in Ireland.

“They are often their family members’ primary caregiver and at Debra Ireland we feel they should be on a priority list.

“Because of their close daily interaction with their child, if they fall ill it places an enormous burden on the family.

“We are joining with other organisations like Family Carers Ireland in calling for family carers to be included as a priority group for vaccinations.

“Obviously we fully support the prioritisation of paid carers, many of whom deliver care to those with EB, but we also want the larger majority of carers who are providing unpaid care within the home to be treated equally.”

PA


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