Oral submission from parents – ABP, December 2015

The following is a submission read at the Oral Hearing re the NPHDB application to build the National Paediatric Hospital at St. James, Dec 2015

We are the parents of a child who has a life limiting condition of Mitochondrial disease.  He is aged 9 and has chronic renal failure, profoundly deaf, poor muscle tone so does not walk, an intellectual disability, a problem with his heart and many other organs are and will be affected by his disorder.  We attended Crumlin first and now are attending Temple street.

To hear that the people behind the new Childrens hospital appear to be ignoring the parents of sick children is just unbelieveable.  We are your clients and in any other industry, if the clients don’t like the product it wont be bought.

We suffered horrible stress going to Crumlin first, parking was a nightmare.  I once had to park down the road in a housing estate and ended up falling trying to get my son into his buggy.  I was shaken for a number of days after that.  Then going to Temple Street wasn’t much better.  Parking at metered parking when you could be 4-5 hours at an appointment creates more stress for parents.  We finally got a disabled pass but there are only 5 disabled parking spots in the immediate vicinity of the hospital and normally never free when we attend for appointments.  We have a van now with a ramp and need the extra space to put that ramp down.  Now this new hospital is to be located in another city centre location again with no adequate parking and this will put more stress on already stressed parents of a child with a life limiting illness.  What is wrong with the people behind this project???  They obviously do not live my and other parents lives with sick children.

Crumlin, Temple St and now James st are located in areas that are not safe.  I will not venture out of Temple Street at night.  There were alterations one night at A&E and the people could be heard all through the hospital and James st is no better.  A city centre location is not a safe option for parents.The nursing staff in Temple street are consistently having their cars broken into.  We are told not to take our mobile phone out and use it walking around the vicinity of the hospital because phones are constantly being snatched off parents and staff.

I have to laugh when I hear the people behind this hospital saying we should take public transport.  We travel with a wheelchair, an NG feeding machine, a huge nappy bag than has one to two changes of clothes as my son vomits consistently, a huge changing mat as most disabled changing facilities in these hospitals are not big enough and we have to change my son on the floor.  We would be carrying extra feeds in a cooler bag, medicines and water.   He has a life limiting illness and you want me to take a bus into town at rush hour (& we mightn’t get on the bus) and then take another bus or Luas out to the hospital.  That would take us the guts of 2-3 hours ONE WAY with a child with a life limiting illness.  Seriously, who is this person that is suggesting that we travel on public transport.  And we are lucky, we live in Dublin.  A hospital located off the M50 would be a far better option for anyone travelling up from the country.  Going into a city centre location is a nightmare for those parents who don’t know the way, don’t know where parking is located added on top of the fact that they are travelling with a sick child.

We recently had to attend the Lady Cilento hospital in Brisbane while on holiday this year, a fantastic hospital and one that made me realised what the potential of a childrens hospital could be.  However, they are now experiencing the problems that us as parents here in Dublin keep telling you – the city centre location is terrible for parents travelling with sick children, they don’t have enough parking and they don’t have enough parents accommodation.  The parents of sick children need to be listened too.  We are your clients and customers of the hospital – if this was any other industry you would be out of business for not listening to your clients.

Parents of sick children are constantly fighting for their child, for services, for better care, for everything connected with their child and you are not listening to us.   Every program where you see a debate on this, there are no parents of sick children represented.  Why? Why is our opinion being disregarded?