Special Needs Family Days Out: Time for a change?

Purely Lora by Purely Lora Additional Needs

Purely Lora

Purely Lora

Hello! I live with my husband, cat and our son, who is nearly 2. Our little boy has a life-limiting epilepsy syndrome and this means we can get to...

I haven’t need to use them myself and since we’ve been thrust into the bonkers world that is being a parent of a severely disabled child, my son has been little enough to be changed in the same way as his non-disabled peers.

This easier time is fast coming to an end.

We don’t anticipate our son to toilet train.

He is 13.5kg and quite tall.

His legs dangle uncomfortably over the end of the baby changers.

I’m not entirely sure on their maximum weight limit, but some do not look sturdy enough for my boy.

I’ve known about the Changing Places campaign for over a year, but haven’t acknowledged it as we could get away with changing him in baby changing facilities.

Changing Places is pushing for fully accessible toilets that truly meet the needs of 230,000 people in the UK with a range of disabilities, including 40,000 people with profound and multiple learning disabilities, of which my son is one.

To be an accredited toilet a Changing Place needs to have a height adjustable adult size changing bench, hoist system, enough space for the disabled person and 2 carers, a toilet that can have a carer on either side, a curtain for extra privacy, disposable paper to cover the bench and an appropriate bin.

As you would expect with a child with complex health needs, my son has a lot of medical appointments and a range of different consultants and professionals.

We recently had a very long day at Southampton General Hospital (SGH).

We travelled for an hour each way, went to three separate clinics, plus a blood test.

In total, our day out was nearly 9 hours long.

SGH serves 1.9 million people living in the local area, plus a further 3.7 million people across Southern England for things like neurosciences, cardiac and children’s intensive care.

They employ over 10,000 members of staff.

During our day my son needed his nappy changing a few times.

We know where the conventional disabled loos with baby changing are, and can often change him in the weighing and measuring room in the outpatients department.

However, we ran into some difficulty during this visit.

Firstly, outpatients was very busy, so we felt we couldn’t jump in and ask to change him when the staff had a backlog to clear.

Twice we went to the Parent and Baby room, which has a secure sideboard, it was locked and we couldn’t find a member of staff to open it.

We waited outside a disabled toilet which has a metal fold down changer, on 2 occasions, for 10 minutes.

Obviously people are entitled to go to the loo, disabled people with decreased mobility may take longer, but we began to suspect it was out of order and the sign had fallen off.

We went to find another baby changing toilet.

When we did we discovered the plastic fold down changer was in an alcove and there was no room for my lanky boy to dangle his legs.

It was made of plastic and didn’t appear as sturdy as the metal one we’ve used before.

We were left with two choices: the floor or, thankfully, a bit of sideboard by the sink.

We pumped for the sink.

Looking back now maybe we should have headed back to outpatients and asked them to help us.

Nearly every consultation room has a bed in it, although most of them were in use.

However, should we have to make a song and dance every time he needs his nappy changed?

Telling people he’s gone to the toilet, trying to find a room available? Would we want that if we needed to go for a wee?

What about a child who is older and more aware than my son?

Or an adult?

There is certainly no dignity in having to be changed on a floor, is there any more dignity in having to share personal details with complete strangers?

I was genuinely surprised that there is no Changing Places facility at SGH.

I would expect such a large hospital, covering such a wide area, to be at the forefront of patient care and disability awareness.

I can think of another 4 children I know under SGH care who require the type of facilities of a Changing Places.

Intrigued I went to the Changing Places website which has details of toilets.

There are 735 Changing Places in the UK.

A quick scroll showed me that 22 of them are in hospitals.

I’ve tried to find out how many hospitals there are in the UK to put this into perspective, but that seems to be a challenging and complex question.

Loosely, there are 168 ‘acute trusts’, which are a board that manage hospitals, in England alone.

Without having to sit down with a calculator I can see the maths does not add up.

Healthcare providers are not providing suitable changing facilities.

Yet, others are, and in some surprising places.

The nearest Changing Place to SGH is West Quay, a shopping centre a few miles away.

The Trafford Centre in Manchester.

Lots of libraries and leisure centres.

Some leisure centres even have 2; for poolside and dry side activities.

Car parks.

The Tate Modern.

The NEC.

An ASDA and a Tesco.

Glastonbury Festival brings in a mobile Changing Places Unit.

But not a hospital that serves nearly 6 million people.

The Changing Places that gets me really excited is at Alice Holt, a Forestry Commission wood in Hampshire.

We can go there as a family and go for a walk, things we’d planned to do when we discovered we were going to have a child but have found hard due to his needs.

Yet we can also go to a lovely room which is heated and change my son in dignity.

You can find out about the Changing Places campaign here and they also have a Facebook page.

Firefly has a campaign called, ‘Space to Change’, where you can learn more.


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