Lorna Fillingham believes that it should be compulsory for 'Changing Places' toilets to be installed in public places and that they should be included in plans before planning permission can be granted.
In this interview with Firefly she tells us a little bit more about herself and the reason why she is campaigning to make a difference.
Tell us a little bit about yourself and your family?
I've lived with my partner Colin for the last 20 years and we have 2 children - Emily-May and Thomas.
My daughter is differently abled in that she cannot stand or walk unaided and is still non-verbal (she's 6).
My son is a typical 2 year old. I'm currently not working although for nearly 20 years I worked at my local hospital, firstly as a health care assistant and then as a registered nurse.
We try to be as typical a family as we can be, we enjoy heading out to the seaside, exploring museums, going out for walks and living life to the full.
How did you get in to campaigning?
I got fed up of having family days out and having the niggling feeling all day as to where I could change Emily-May when she next needed her toileting needs met.
She's now 6 and is a bit big for baby changing facilities (although I still do risk it), and most places we go don't have changing facilities for adults and older children to use if they're not able to sit on a loo.
We like to be out and about.
I didn't want our adventures curtailed because of the lack of decent toilet facilities.
I also didn't want a future for my daughter which involved her being laid on public toilet floors or at some point have to potentially stop going where we wanted because she'd got too big for me to manoeuvre so there was only one option left which was to fight for her rights.
Which I'm still doing to this day.
I'm currently campaigning for Changing Places facilities to be made compulsory for new public buildings as listed in BS8300/2009 which includes schools, hospitals, stadiums etc.
I'm also campaigning for Changing Places facilities to be compulsory in new and existing hospitals and healthcare settings for the use of outpatients and visitors. You can support my campaign by signing my petition here.
What has been your highlight of campaigning?
So far, it's been the announcement that my local council (North Lincolnshire) are going to invest £90,000 in providing 10 new Changing Places facilities in the region.
Not only that but they have put a local planning policy into force which states that developers should include Changing Places facilities in their plans, so hopefully there will be many more to follow.
Myself and fellow campaigner Sarah Brisdion have emailed every council in Great Britain urging them to encourage developers to include Changing Places facilities and we had over 50 positive responses so hopefully we'll get more around the country too.
And we're going to go back to all those councils that didn't respond at some point too...
Was has been your low point of campaigning?
As part of my hospital campaign I've been emailing hospital trusts and clinical commissioning groups asking them to look into what facilities they provide for severely disabled outpatients and visitors to access toilets.
I've had 2 hospital trusts respond by saying that they didn't have space for a Changing Places facility, which fair enough Changing Places standards dictate a large space.
I emailed back asking if they would change their planning specifications for future toilet developments so that a Changing Places facility would become a reality in the future and I was told no but that it would be a serious consideration for future developments.
I don't think a consideration is good enough from healthcare settings.
They NEED to be in place.
Feedback I have received tells me that in our hospitals some disabled outpatients and visitors are having to be changed on the toilet floor or people are self medicating in order to avoid toilet use.
This is against every policy for inpatients so it should not be acceptable for outpatients or visitors to be treated this way. I'm a big believer in the NHS, but here it needs to do better.
What would your words of wisdom be for anyone thinking about campaigning?
Know that you're probably going to be in it for the long haul and that sometimes it's going to feel like it's taken over your life...
I find myself talking about toilets a lot (sometimes I can actually see people's eyes glaze over...!), as well as Equality and what it means for us as a family.
My campaign started with a letter to my MP and a petition.
I've been on local radio and TV as well as local newspapers. Between us, myself and Sarah Brisdion have emailed 385 local councils and 350 healthcare settings to date as well as Government Ministers For England, Scotland and Wales.
Sometimes you get positive responses, sometimes you get negative and sometimes you don't get a response at all.
If this campaign fails it will not be due to lack of effort...
What are your hopes and dreams for the future – in life in general and with regards to accessible toilet facilities?
That people see my child and not her wheelchair, and that parents encourage interaction rather than telling their children not to stare.
It would be good if everywhere was designed with access for all in mind too, and that definitely includes truly accessible toilets!
Who is your inspiration?
My daughter, she's incredible, she takes what life has thrown at her with very little complaint, and usually with a smile on her face.
Without her none of this would have happened and when I begin to suffer from campaign fatigue it is her and her future that motivates me to carry on.
As Lorna mentions in her interview, existing venues are often unable to provide a Changing Places toilet due to space restraints. Firefly's Space to Change campaign offers existing venues options to install a height adjustable bench and overhead hoist into existing disabled toilets.
Clos-o-Mat, Britain’s biggest provider of toilet solutions for disabled and older people in and out of the home and supporter of Space to Change is on hand to advise businesses on what is possible in an existing venue.
If you are interested in campaigning for better accessible toilet facilities in your local area and/or to find out more, get in touch with us!