Getting the right support
There is a lack of facilities at hospitals to deal with the varied needs of our children with disabilities, says Lorraine Dempsey
First off it's always pertinent to point out that special needs is a huge umbrella term covering intellectual, physical, sensory and emotional and behavioural difficulties; and, within that, the range of needs, from mild to severe, means that every child is different and unique despite falling into any of the above categories. Many, but not all, need a high level of care and attention all of the time from their parents.
How well do we really cater for children with special needs in Irish hospitals? It's hard to ever fault the staff in our hospitals when we are grateful that our children are having their clinical needs met, but we definitely need to listen to the experiences of parents on how we can make the whole thing better and not just for children who are ill, but children who are ill and also have special needs.
One would expect that hospitals of all places should be well set up to cater for all children but my experience and that of other parents doesn't always reflect that. Most parents who have spent more than one night in hospital with their child will tell you that, in general, staff are great, but the facilities are diabolical.
When my daughter was younger, I didn't really notice the lack of facilities to cater for children who have physical disabilities, with the exception of the sometimes inappropriate food options for children with chewing and swallowing difficulties.
But now, a simple thing like giving her a bath in hospital has become a major exercise with no equipment available such as a hoist for lifting safely or a special seat in the bath to support her while my hands are busy trying to wash her.
In fact, during her last experience as an in-patient, there didn't seem to be a hoist anywhere in the hospital. Toilet facilities are also another big headache. Conventional wheelchair-accessible toilets are designed around the idea of adult wheelchair users who can transfer themselves. This design problem is not just a hospital issue but a national one.
Some children and adults with more severe disabilities require changing facilities because they use incontinence wear and that is seriously lacking. I am sure that I am not the first parent to prop up a baby changing unit with a nappy bin or have to lay my child on the floor in order to change them. Neither is really safe nor dignified and it would be great if our hospitals had designated fully accessible toilet facilities, especially for out-patients who don't have the alternative of using a bed.
In the UK, they have a 'Changing Places' campaign and have managed to get over 600 of these more accessible facilities in place both in healthcare and public settings. I am sure that we could aspire to the same and a good place to start would be in our children's hospitals and I could be saved from the indignity of kneeling on a bathroom floor. I can only imagine how awful it is for my daughter.
In talking to parents about their experiences, they pretty well match up to my own ones. For the most part, when you identify that your child has special needs the staff will do their best to put your child in a single room, particularly if they would have difficulty coping with the environment of a shared room.
I can now look back and laugh at the last experience of being in a shared room, but it was no laughing matter at the time, as I lay awake listening to a man (who was not my husband), snoring his head off three feet away from me. If he had been my husband at least I could have given him a dig in the ribs. I'm not sure which was harder to bare, him snoring or the indignity of having to sleep on a mattress from a baby's cot because that is all that the staff could find for me to use.
I had missed the 'Great Mattress Run' that happens every evening in Our Lady's Children's Hospital in Crumlin. The reason I had missed it was because there was no one available at the time to sit with my daughter, which brings me to another issue.
Not every child can be left alone in their bed, even if you just want to nip out for a minute to go to the toilet or a bit longer to get a hot drink. Tubes and lines can be pulled out in an instance and falls are a big risk with my daughter. You are essentially providing 24-hour care for your child when in hospital and if staff are busy – or unless you get respite from a relative – you can forget about leaving the tiny cells that many hospital rooms start to feel like after a while.
Enough about us parents though, what's being in hospital like for some of our kids? Well, it can be a nightmare setting for a child with autism, sensory processing disorders and moderate to severe learning disabilities where they can be overwhelmed by the bright lights and noise of a busy ward while also having to deal with any sensations of pain or discomfort that they may not be able to express verbally.
Parents know their children better than anyone else and know what their child's typical responses are to their environment and how to deal with it, especially when they are non-verbal.
Children prone to outbursts and seemingly aggressive behaviour may come across as intimidating to younger children and probably their parents, but what's really going on is that the child who lashes out is probably feeling overwhelmed and intimidated by everything and everyone around them. The sound of a floor buffer can be the same to them as a lorry driving through the room.
Who better to know how to handle those situations than their parent. It was really sad to read an article last week about a parent of a teenager in the UK with severe learning disabilities who was reported to social services for "safeguarding issues" during a hospital procedure because she held on to her daughter as she lashed out and tried to leave the scanning room.
Her daughter's behaviour was anticipated by her mother and dealt with in a way that her mother knew would allow the medics to continue with what was a critical and long awaited test.
Her mother knew how to manage her daughter's common challenging behaviours and perhaps the staff, in such a heightened and uncommon situation for them, misinterpreted her mother's actions and also the reasons behind the extreme behaviour of her daughter. Simply put, it was a door swinging open abruptly with several strangers in a room on the other side all looking at her that terrified this girl. She wanted to get out of this fearful situation, naturally enough.
A three-year-old might start crying and would be held tight by their parent for comfort, but maybe staff were not aware that the same might have to be done for a 17-year-old for the same reasons. You might say that surely the mother wouldn't have put their child through such a distressing situation but, if you have been fighting for a long time for doctors to listen to you when you instinctively know that your child is unwell, you will not pass up the opportunity to find out what's really going on and get them a treatment plan.
I know when my daughter is 'just not herself' and I have been fobbed off in the past and as a result know that it is far better to persist when instinct tells you something is wrong.
I believe that parents of children with rare diseases become more of an expert in their children's condition than many doctors they encounter and their knowledge should never be seen as a threat but an asset.
Did you know that in the UK, Mencap a charity representing people with disabilities, estimates that around 1,200 adults and children with disabilities die every year where one of the factors identified has been a refusal of medical professionals to listen to and appreciate that parents are often more expert in their child's needs and what is normal and abnormal for them. I wonder if we have ever measured that experience in Ireland and maybe it is time that we did.
- Lorraine Dempsey is Chairperson of the Special Needs Parents Association. For practical information on staying in hospital with your child, see www.specialneedsparents.ie
Health & Living