Over the past few months you may have seen temporary solutions popping up to ‘solve’ the issue of disabled toilets not being suitable for all disabled people.

From portakabins to mobile toilets and even toiles in tents, there are numerous options on the market now which provide a temporary, and mobile solution.

But families like mine are becoming increasingly concerned about these temporary solutions.

It seems to us that they are being promoted as the answer to all our problems and a “quick fix” within the places we want to visit.

The reason we are concerned is because they are not suitable for everyone.

A mobile changing places toilet, such as a MobiLoo has its place and is ideal for temporary events, it can park up and provide a toilet solution where there wasn’t one previously.

But when it’s gone, so is the toilet.

And we shouldn’t be planning our days by following a mobile toilet from venue to venue.

A temporary structure such as a MigLoo also has its place in the market and is ideal for a school fete or even a one day festival (although in both of those places, a MobiLoo would provide more privacy and a safer hoisting system).

These type of structures might even have a place as a temporary solution within a building while they are building a permanent Changing Places toilet.

But any building which can house one of these temporarily could, and should, provide a permanent option which would be suitable for everyone.

A portakabin also has its place and is perfect for buildings which don’t have enough space indoors but if a large building is providing toilets for everyone else inside, then why should a disabled person have to go outside (potentially in the rain) to get to the toilet?

A changing places toilet is essential to so many people because of the things it provides which you won’t find in other disabled / accessible toilets.

A ceiling track hoist, which covers the majority of the room.

An adult sized, height adjustable, changing bed which provides somewhere clean to lay but also offers the carer different height options to allow for their safety and prevent issues to their backs.

Space for the wheelchair user and carers, or children if the parent has more than one child which is very common but often forgotten.

And a toilet and basin.

Facilities with these things have recently been referred to as the “gold standard”, but to me this is the basic standard.

Because, without those 5 things, a changing places toilet is not usable by everyone who needs it.

It is great to see more people getting on board with the changing places campaign, and working hard to make changes for more than ½ million people who need them.

However, as a campaigner I feel as though these temporary solutions are simply watering down the campaign.

They are giving businesses cheaper solutions which are not suitable for everyone.

The businesses providing those cheaper options will end up realising that they aren’t suitable for everyone, or aren’t being used, and will then have another excuse not to provide what we all really need.

And that is a real shame.

Today is international women’s day so I wanted to take a minute to tell you about a woman who has taken her daughters challenges and turned them into a positive for her whole family –

her story really is inspirational.

Jess is mum to a 7 year old daughter, Willow and a 6 year old son, Albie.

When Willow was 2 years old, she was diagnosed with a condition called SMA type 2.

This devastating disease robs children of the ability to walk, crawl, stand, sit and eventually swallow.

As you would expect, the first few years after a diagnosis like this were filled with anger, grief and uncertainty.

But it’s what Jess has done with all that emotion and turmoil that has inspired me so much.

Just like me, Jess had had lost all her confidence after Willow’s diagnosis and it wasn’t until her children were both at school that she felt she had the time or energy to do something for herself.

She eased herself back into society by starting a volunteering role one day a week at her daughters special needs nursery, a place she felt relaxed enough to regain her sense of being more than a mum.

But throughout all of this, Jess always knew that eventually she wanted to run her own business, because that would be the best way of working and earning a living around Willows hospital stays, appointments and all the things we all know stop us returning to a full time role.

She just needed to figure out what that business would be.

As Willow grew older, Jess faced the same problems I have faced with William.

Problems you might also be facing.

Getting Willow dressed was becoming a huge battle, getting her coat on would end up with Willow having a huge meltdown and Jess losing her patience.

So she began to search for adaptive clothing for children online.

But everything was boring, medical looking and not what she wanted for her beautiful daughter.

This led her to wonder whether it was possible to set up her own company selling fun, colourful, adaptive clothing.

She knew she couldn’t do it on her own, so during a drunken conversation with her brother he agreed to go into business with her and in November 2016, they set up Willow Bug.

A year on and Willow Bug has already gained massive traction and is a popular brand amongst families like mine, they’ve won the Small Business Sunday award run by Theo Paphitis of Dragons Den fame and they are going from strength to strength.

They sell such lovely products for children who use wheelchairs, in a lovely range of colours and prints (we have many of them!) and Willow is a fantastic model for them.

I love the idea that a woman who has faced similar challenges to me, has turned it into a such a positive by creating a fantastic business which not only supports her own family, but helps to make the lives of other families much easier.

Jess is exactly the kind of woman that inspires me and the kind of woman I’d love to see celebrated on international women’s day.

Anyone who has had kids knows what a faff it is to get them in the car, strapped into their car seat and then squeeze all their bits and bobs in around them.  When your child is a wheelchair user its about 500 times harder.

Until William was 5 years old we had a standard car.  He sat in the back seat and we could collapse his wheelchair and pop it in the boot.  But 5 year olds are heavy.  And their wheelchairs weigh a ton!

Lifting him and his wheelchair in and out of the car constantly was doing my back no good at all.  All that twisting was causing me hip problems and nipping to the shops was no longer a possibility.

That’s why we started considering a WAV (wheelchair adapted vehicle).

I didn’t much fancy driving a van around, and I loved my Touran, but something had to give and I was worried it would be my health.

We tried out a couple of different vans but settled on the VW Transporter which had enough space for Williams additional equipment to be carried with us when needed (toilet seat, hi-lo chair, even a trike would fit in the back with him).

But the down payment on these things is horrific, and with Motability you have to change your vehicle every 5 years so you need to plan for the future and consider whether you can make that payment again.

We were lucky in securing a grant from Motability which meant our down payment was significantly reduced, but we have no idea if we will be eligible for that again when we need to upgrade.

We chose a side loading lift for Williams wheelchair so that we could have him sitting close behind us and still be able to get him in and out of the van if there was additional equipment behind him.

It’s enough of a faff getting him in and out as it is without having to unload everything each time.  You can read more about why we chose this one here.

This van has been a life changer.

Yes, it is still a faff to load him up and popping to the shops takes at least an additional 20 minutes, but we no longer have to lift him, or his wheelchair.  My back gets a much needed rest and he is comfortable and secure in his chair.

We have recently asked Motability to provide an open insurance policy so that William can go out with his PAs (carers) in it.

It was simple to do, we simply needed proof that William has carers looking after him (a letter from PA, carers agency or proof of direct payments is adequate) and now anyone can drive it as long as it is for William’s benefit.

So if you at the stage when you know you need a WAV but you really don’t want one, don’t despair.

It is a big adjustment but it is also a game changer and makes life so much easier, I don’t regret it for a minute.

Over the years we haven’t had many big milestones to celebrate with William, but the small ones have been incredible and well worth celebrating.

The day he left hospital.

First smiles, first laugh, first teeth, first holiday.

The first time he slept through the night… that one was a long time coming!

The first time he ate a whole meal without throwing up.

His first day at school and first day on the school bus.

There have been too many little milestones to remember but every single one has been incredible.

But now we’ve reached the one milestone I don’t want to celebrate.

One I was hoping was a long way off in the future.

I knew it was coming but was hoping we weren’t there quite yet.

The milestone I’m talking about is the one where he is getting too big.  Too heavy and difficult for me to lift anymore.

William is almost 9 now, he weighs about 22kg and while his weight is still manageable, he is tall and awkward to manage.  He doesn’t support his own weight and his limbs are all over the place!

Physically, I can lift him, I am strong enough, but every muscle in my body works overtime when I do and last year I injured myself.

This year I have to face the reality that 2018 is likely to be the year when things will need to change.

The year I will have to stop lifting and carrying my, ‘baby’, because he’s just too grown up.

And it’s making me sad.  Sad at the cuddles I’ll miss out on, because lifting and carrying him really is just another way to get a sneaky hug!

I’m sad that my boy might wonder why I’ve stopped.  Will he think I don’t love him as much anymore?

I’m sure he won’t but while he is used to being hoisted at school, at home we tend to only hoist him into the bath or the hot tub.

21st January is national hug day, and it’ll be a mix of emotions for me.

But really, it’s just another excuse to scoop my boy up and give him a big cuddle to make up for all the missed ones in the future.

My son, William, has quadriplegic cerebral palsy and is a full-time wheelchair user.

His disability is at the most severe end of the scale which means he can’t sit or stand up.

That makes life awkward but we make the best of it and the only time we face real issues is when we venture out of the house.

Because of his disabilities I have become a big advocate for changing places toilets because without them it is almost impossible for him to use a toilet when we go out.

He can’t stand up so I need to lay him down to remove his clothes and then lift him onto the toilet.  He is almost 9 so he’s pretty heavy already but when he’s bigger it’ll be impossible for me to lift him.

And without a changing places toilet, where am I meant to lay him down?

The toilet floor?

While asking businesses and services to provide changing places toilets I have become used to hearing excuse after excuse as to why they can’t or won’t upgrade their facilities.

But these are the five things I am really tired of hearing…

1. We are trialling Changing Places toilets in some of our stores.

This is something I’ve been hearing from Tesco for over 3 years now, but they still have no intention of installing them in their other stores.

But when I am standing in their store sobbing with my son screaming next to me because he needs the toilet, you’d expect them to move on from trials and see the need in front of their faces.

I set up a petition to supermarkets recently, you can sign it here.

2. We are DDA compliant

I can’t tell you how angry this response makes me.  Firstly, the DDA (disability discrimination act) was replaced by the Equality Act 2010 8 years ago!

However, regardless of them believing they are compliant, I would hope that the knowledge that a disabled child has to lay on their dirty toilet floors might make them realise it isn’t enough to simply be compliant.

I’d hope they’d want to go over and above that legislation.  But they don’t, and it breaks my heart that my son isn’t considered an important enough customer to make changes to provide for him.

3. Changing places toilets are more suited to a shopping centre

This once confuses me so much because it usually comes from a large business who provides toilets to all their customers, often with 2 disabled toilets, baby changing facilities and a baby feeding room.

If they don’t want those customers to leave their store, for fear they won’t return and spend their money, why would they want us to leave to go elsewhere?

4. We understand the need for changing places toilets

Yep sounds bizarre that this would wind me up doesn’t it!  But it is almost always followed by a bit BUT… but we don’t have the space / budget / etc.

And usually involves some other platitudes that are meant to make me think they really do care about the fact my son can’t use a toilet in their stores when really I know they don’t give two hoots.

If they did, this sentence would end with, “and we will be installing one ASAP”, instead of, “but…”

5. We comply with building regulations

That may well be the case but that doesn’t help my son!  Just because building regulations don’t call for a changing places toilet it doesn’t mean it isn’t vital for customers.

Baby changing and feeding rooms are also not required under building regulations but that doesn’t stop businesses from providing them for customers or visitors!

You can sign this petition to call on the government to change building regulations to include changing places toilets.