Lucan dad and full-time carer helps launch Score Card for Family Carers

By Brendan Grehan

Damien Douglas, a full-time carer and father of five, was in Buswells Hotel last Thursday moning, across from Dáil Eireann, to help launch Family Carers Ireland ‘Family Carers’ Score Card’.

The Score Card assesses what the National Carers’ Strategy has achieved over the last three years.

Damien, from Hermitage in Lucan, cares for his twin daughters Ailis and Una (21) who suffer from a chromosomal abnormality known as Wolf-Hirschhorn Syndrome.

Damien has cared for his daughters since they were born. Formerly an Assistant Director of Nursing with the HSE, he retired in 2013 to care full-time for Ailis and Una.

Since then he has been active in lobbying for the provision of services for adults with intellectual disabilities. As part of this Damien has been involved with the Family Carers Score Card.

He told The Echo: “It’s a work in progress. I have only been involved for a relatively short while. It has been very enlightening from the point of view of being a carer and then seeing the process.”

Family Carers Ireland say that good engagement with government departments has brought meaningful progress; however, critical areas such as respite provision and discharge from hospital to home remain significantly under-resourced, resulting in negative impacts on family carers’ lives.

This is reflected in Family Carers Ireland 42 scores which assess official policy in light of the lived experience of family carers.

The Score Card is based on an assessment of the Government’s Third Progress Report on the Strategy from September 2014 – September 2015.

Of the Strategy’s 42 objectives Family Carers Ireland has found one objective achieved thus far; good progress made on 14; initial progress on seven; 17 with no progress and three having regressed.

Family carers contribute 6.2 million hours of unpaid care each week, saving the State €4 billion each year. Investing in family carers will not only save the State financially but ease pressure on health services.

Wolf-Hischorn Syndrome means that Ailis and Una (who celebrated their 21st birthday two months ago) are non-verbal and require care and supervision 24 hours a day.

They are wheelchair users, which can make transport a major issue, and at home must be moved with a hoist. The twins are fed through a syringe in their stomachs twice daily, and peg-fed overnight, and must be showered daily due to incontinence. The condition further has led to added complications, including epilepsy and joint problems.

His decision to take early retirement from a rewarding career coincided with the twins’ turning 18. He had a long fight to get his daughters into daycare services

Damien told The Echo: “Now that they are in daycare, it is brilliant for them. They are in daycare from 9.30 to 3.30 Monday to Friday with Stewarts’ Services”.

Ailis and Una get a real thrill out of listening to music. Damien tells us that they love the theme tunes to ‘The Simpsons’ and ‘Eastenders’.

Damien says: “They can’t do anything for themselves, only smile,” adding: “They are so happy. They love music and sensory stimulation, and are very social in their own way. A lot of energy goes into looking after them.”