Regularly visiting healthcare settings such as hospitals, health clinics, GPs and therapy settings is something that many disabled people grow used to. Check ups, X-rays, medication reviews, sleep studies and admissions to hospital for operations or illness are often part and parcel. Given the nature of these ‘caring’ settings, you would be forgiven for presuming that they automatically provide for those with more complex disabilities and continence needs. Yet there are thousands of healthcare settings that continue to disable their patients by not providing safe toilets for them.
Laura Rutherford is a parent-carer from Bonnybridge in Scotland. Her son Brody has an undiagnosed genetic disorder, autism and epilepsy. He is doubly incontinent. Brody has regular medical appointments to manage his conditions and monitor his health.
Laura says: My son Brody is 11 years old and the best boy you could ever meet. His smile lights up the darkest room and he is a joy to be around. When we go out, he is often excluded and not thought of. For example, most parents leave the house with the knowledge that their children will always have safe access to a toilet wherever they go. That isn’t the case for our family. If there isn’t a Changing Places toilet, I must change Brody in unsafe, unhygienic and undignified places like the toilet floor.
“It’s bad enough that this is the case in most of the places that we visit with Brody, but would you believe many doctors surgeries and hospitals in the UK don’t even have suitable toilet facilities for people like him? Isn’t the objective of the NHS to care and look after people’s health and well-being? When Brody was admitted to hospital recently, I had to change him on his hospital bed whenever he went to the toilet. This shouldn’t be the case in 2023.
Laura continues: “It’s heartbreaking as his mum to know that as he grows this issue will only become more difficult for us – unless things change. We need more NHS facilities to install Changing Places toilets so that everyone who attends can use the toilet – a very basic human right.”
Sarah Brisdion is a parent-carer from the New Forest. Her son Hadley, aged 12, has Cerebral Palsy and is a full-time wheelchair user. Hadley has regular appointments at his local hospital and health centre for therapy, to monitor his scoliosis and muscle spasticity and all that impacts.
Sarah says: “We are lucky that our main hospital has a Changing Places that we can use on our regular visits to neurology, orthopaedics, children’s psychology and radiology. These appointments are almost always long – they can take up a whole day sometimes once we factor in the journey and waiting times. Hadley and I both use the Changing Places at least before and after his appointments. Not least as his treat for being pulled around and putting up with yet another hospital appointment, is to choose a fizzy drink and something yummy from the cafe.
“I cannot say enough how much this helps us manage what is often a stressful time for my son, who suffers from severe anxiety. Talking about intimate details of your body and inevitably the negatives that come with your disability, can be really upsetting. If he then couldn’t go to the toilet when at the hospital, I have no idea what it would do to his mental health that’s already under strain. My physical health is not great either, so I am really grateful not to have to struggle trying to dangerously lift him and transfer him to the toilet without the right equipment.
“In stark contrast, Hadley also has regular check ups with his community paediatrician, physiotherapist and occupational therapist as well as orthotics. None of the facilities these appointments are held in have a toilet Hadley can use safely. We have had to resort to abandoning appointments before they have even begun to go home to use the loo, and even lying Hadley on a toilet floor to clean him up when he just wasn’t able to hold it in.”
Sarah added: “I cannot put into words how it feels, having no other option than to subject your child to a toilet floor. It’s the lowest I have ever felt!”
Claire Haymes, Changing Places coordinator at Closomat, says: “There is a common misconception that behind that wheelchair symbol on an accessible toilet, is everything a disabled person might need. This is not the case. Whilst standard accessible toilets meet the needs of many people, they are hugely disabling for people like Brody, Laura, Sarah and Hadley and put them at a huge disadvantage.
“Healthcare settings are under pressure, everyone appreciates this. But this is not a new problem. This is something that patients (and staff) have been enduring for years and it needs to be rectified. The solution is relatively easily in the big scheme of things and should be a priority for local healthcare authorities and trusts, whose responsibility it is to ensure disabled people are able to access and participate in their communities in every sense.”
You can read about how theatre-lover, Kerrie, regularly risks her health to watch the shows she loves here.
Read Ella and Luda’s thoughts on what it is like to socialise with your friends in a world that doesn’t ensure everyone has access to a safe toilet here.
Shelley and Fraser, share their experiences of using the toilet at the cinema when it doesn’t cater for their needs, here