Home > Smash Social Exclusion – Graeme’s story

In this interview with one of our Stoma Aware Stars campaigners, Graeme Henderson explains what inspired him to campaign for improvements to toilet facilities in Northern Ireland.

What are your own experiences of using public toilets since you’ve had your stoma? 

My experience of using public toilets is no doubt like most, some good and some absolutely terrible.

In general, normal use public toilets are a nightmare even in the accessibility ones as they are unclean and don’t have the correct facilities to enable us to change or in some cases even empty a drainable bag easily.

In recent years the facilities and accessibility in hospitality places, such as pubs, restaurants, theatres, cinemas has improved greatly and while some are very good others still need to progress to make them stoma friendly for all.  However, in the 11 years I’ve had a stoma through emergency surgery my worst experience ever happened very recently at a well-known Restaurant in Belfast where I was refused to be given the location of the accessibility/disabled toilet as I did not look disabled enough. As my bag seals had started to come loose, I was forced to do a full bag change in a small gent’s cubicle approx. 1m by 2m with no mirror etc and done by using my “emergency” bin bag laid on the floor as a clean area to enable me to change.

I do believe that the establishment now has changed policies and introduced staff training after Colostomy UK contacted them about this as well as myself.

What inspired you to get involved in our Stoma Friendly toilets campaign?

I was inspired to get involved with the campaign as for too long I’ve seen comments of “we” ‘need better facilities, these toilets are not great, I’m not going back as I was treated badly’ etc on the Colostomy UK Private Facebook group and I thought when I saw the Charity starting the campaign that NOW is the time to do something and make a difference even if it is just a small one.

We the ostomates cannot solely rely on Colostomy UK or other charities to speak for us “WE” have to get our voices heard and talk about our conditions.  There is still a lot of ignorance out there, but it has gotten better over the past few years. I’ve always been a doer and done things for myself, while it was life changing it gave me my life back. Now I know some people struggle to come to terms with having a stoma, so it is up to those of us that have come to terms with it to be the voice. We can’t rely on charities speaking for us all the time the best voice is the voice of the ostomate hence why I got involved to get my voice heard and that of others, all be it with the support of the charity.

What are your biggest successes so far, and have you had any setbacks?

WOW what a question? I suppose my biggest success so far is getting the Mayor of Ards and North Down Borough Council involved along with her head of Disability. I sent an email to the Mayor outlining the need for stoma friendly toilets in all council run buildings and was not expecting a reply if I’m honest. Within hours I had a reply setting up a meeting to discuss and give a presentation. Safe to say the Mayor Cllr Jennifer Gilmour was true to her word and also contacted the Campaign for further advice. The council has now pledged to make all council run buildings such as sports centres, public toilets, etc stoma friendly. I have also managed to get the Northern Ireland Assembly Estate at Stormont stoma friendly, with a promise that once we eventually get an up and running Government again that they will ensure that ALL Government run building will be the same. Sainsbury’s Northern Ireland are also ensuring all the stores in NI are stoma friendly as have the Hastings Hotel group.

These are the successes SO FAR, now in my sights and emails have already been sent out to Tourism NI, Hospitality Ulster, Every Local council and ALL 5 of the Health and Social Care Trusts. I am especially keen to get the HSC Trusts involved as working in the NHS and travelling to every hospital in NI through work the accessibility toilets just are not up to standards that we need. So my aim is to get every hospital, GP Surgery etc stoma friendly, as an ostomate I find it desperately shocking that the very places that give and create our Stoma’s don’t have facilities fit enough for us to use.

The major setback I have had is trying to get the media to get onboard with this, I have tried the local radio show Nolan at Nine on BBC Ulster but no response yet despite claiming they take on real people’s stories, nor any response from local newspapers “I guess poo doesn’t make news”. And some councils as I am not a constituent of theirs, SO a PLEA anyone else in Northern Ireland willing to contact their council on OUR behalf, I’ll even come to a meeting with you.

What would you say to anyone thinking of joining our campaign?

Only 3 simple words “JUST DO IT” yeah sending that first email is daunting but do it, you may be surprised Remember you are 1 in 335 so statistically nationwide there are 10’s of 1000’s of us, AND YOU can make a difference. I know thanks to the work Lyn Morgan has done in Leeds that the next time I go to see my son in Uni I will be able to access stoma friendly toilets in Leeds that are council run. I also know anyone coming to Ards and North Down or even staying at a Hastings hotel WILL get a stoma friendly toilet. And hopefully soon any Hospitality or Tourist venue in Northern Ireland.  Don’t just join the campaign for you do it for US, I’d love to travel anywhere in the UK and know the toilets were friendly for me. And that would be down to YOU and you getting our voice heard. I can’t speak for Lyn but if anyone is thinking of getting involved and wants to know how I did it and what I did put a post on the Facebook page and tag me in it I’ll happily explain and knowing Lyn I’m sure she would too. I’d also like to say thanks to Giovanni and Emily for ALL their advice and support which I’m sure will be there for anyone else getting involved.

How did you hear about us and our stoma friendly toilet campaign?

I heard about the campaign on the Colostomy UK Closed Facebook page and the newsfeed. I’ve been a member of the group for many years and found it myself by accident when coming to terms with my new “friend”.  Hopefully now hospitals and Stoma Nurses are now directing new patients to Colostomy UK as over the years I have received invaluable advice and made many online friends.