My name is Aisling McNiffe and I am mum of two children, Molly aged 12 and Jack aged 10.

We travel from Co. Kildare, Ardclough near Straffan. Molly (12) my daughter does not have special needs but has a mild heart condition and a hernia so she sees Cardiology and the GI team.

EVERY parent in Ireland needs to realise that this hospital is vital for EVERY child not just the frequent flyers!! So it has to be done right!

Jack (10) my son has Down Syndrome and a very rare syndrome called CINCA. He is very complex medically, he requires 24 hr nursing care. He was on oxygen for over 3 years and is totally peg-tube fed around the clock.  He wears nappies, is non-verbal and cannot walk. He uses a wheelchair. He is immune suppressed and currently on 18 meds daily. He is a Graduate of The Jack & Jill children's foundation. He spent over 3 years in Crumlin cardiac wards and in and out of ICU before he was 3 and a half. He has spent much more time since as an impatient too.

We have also been to Great Ormond street hospital, London, twice so I have seen better facilities than we have here. Good for comparison.

Jack attends both Crumlin and Temple street hospitals. He is under over 10 teams in Crumlin and sees a neurosurgeon in Temple st.

As the parent of a child who has spent long spells in hospital I can tell you comfortable areas and green areas are a priority for families. We didn't even have a kitchen nor a bathroom on the ward where Jack spent over 2 years. I kid you not. Parent's accommodation is like a room in a prison. It's very hard to remain upbeat when you have a seriously sick child and nowhere to get a decent lunch or dinner or go for a breath of fresh air/ walk. A playground would be lovely for both patients and siblings.

Cafés and canteens need to supply proper healthy meals to parents at affordable prices. They need to be open and accessible. Also for people coming for outpatients appointments.

The other issues are access and parking. If we can't get to the hospital then there is no point as I know myself minutes matter. It's a matter of life or death. Jack has had to be blue lighted to Crumlin twice and I have had to rush him in on numerous occasions. Access is KEY. Parking is another huge priority  especially for wheelchair users. We are frequent flyers and parking should be plentiful and free. There need to be adequate parking spaces and they ALL need to be wide to access children in car seats and to put them into buggies/wheelchairs etc.

I would like parents of the future to have a nicer experience in hospital than I had. I was very isolated and conditions were third world. Sleeping on the floor is not good for an anxious mum who has just given birth so beds in every room are another thing that shouldn't be a luxury.

Also my son has numerous hospital acquired bugs and has always been in isolation but there is no bathroom attached? Ensuite bathrooms are a must.


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