- December 4, 2020

This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series

Names have been changed to protect the individuals mentioned in the story. 

As lockdown restrictions ease in the UK, some people with disabilities experience the re-emergence of inequalities in society.

Here two people with bladder conditions explain how the lack of medical treatment and lack of access to toilets is impacting on their lives.

Sarah, 38, from Belfast in Northern Ireland has interstitial-cystitis, also known as Bladder Pain Syndrome.

“Bladder and bowel conditions affect a person's physical and mental health. But you would never guess from passing someone in the street, these are invisible disabilities. Without treatment, life is like an endurance test. On occasion - and I know this doesn't even sound possible to others- I may need to use the bathroom up to 12 times in an hour. I need bladder instillations (drug therapy) and botox. But outpatient appointments have been cancelled so my treatment is on hold. My treatment allows me to at least experience a little bit of relief. 

I imagine there will now be a substantial back log in medical treatment. I don’t in any way mean to sound dismissive, but we all need to understand there are many more medical conditions to fight, other than COVID-19. COVID has made an already difficult situation nearly impossible. Public bathrooms remain unopened leaving those with bladder and bowel conditions housebound.

I tried to go shopping once but had to come home immediately, the public loos were closed and when I did track one down there were so many people in the queue I had to abandon my plans. I am unable to stand in a queue for a long period of time to wait to use the loo. When lockdown was lifted I was looking forward to living, shopping, going to the cinema, taking my children out. But anywhere I go needs to have bathroom access. Now I am unsure whether they will be opened, many are closed, so I am effectively locked down again. 

We need access to public loos, confidence that they will be open. Shutters, 'out of order', 'toilet unavailable' signs all lead to immense anxiety. I don't understand it, nor the local council's and government erosion of these facilities in recent years - as a human race we all need these facilities for all ages of people.

The implications are heart breaking as they rob so many people of participating in society. Bladder and bowel conditions are often being ignored therefore those affected simply give up on going out and stay at home because it is utterly soul destroying, exhausting and humiliating eternally seeking out public loo facilities just to try and be a part of society. It makes me feel unbearably sad, frustrated, anxious, overwhelmed and deflated. Government and policy makers have a social and ethical responsibility to ensure the basic human need of being able to use a bathroom is provided for and not further eroded.”

Lucy is an 18-year-old from Cheshire who has fowlers syndrome, chronic pain and chronic infections.

“Since COVID-19 I’ve had less help with my condition, no treatments or planned operations that I need to improve my quality of life, no support from any health professionals. It makes me feel frustrated and alone. I am an suprapubic catheter (SPC) user however in April it fell out and due to COVID-19 I was not able to have surgery, so I currently have a urethral in dwelling catheter until I can have the surgery to re-insert in the SPC. It is usually done within a week to avoid too much scarring. 

Having my SPC in instead of a urethral catheter improves my pain and the amount of infections I acquire. I also I haven’t had my bladder installations, which I usually have every four weeks, since 17th March and there are no plans for them to start back soon. The bladder installations help manage my pain and therefore I need less opioid medication and my quality of life improves greatly. 

I’m worried about my condition getting worse and my quality of life continuing to decrease. Just because I don’t have COVID doesn’t mean my condition and needs could be dismissed and I should just be left to battle it alone. Whilst everyone’s life is getting back to normal ours is still the same. It feels like we are no longer on a level playing field like how we were in lockdown when everyone was stuck inside. I have a reduced immune system due to medication and I feel confused about what I can and can’t do. We haven’t been given any guidance. I can go to the pub or out for a meal but I can’t get any treatments.

I want people to know that what everyone experienced during lockdown is what it feels like to have a chronic illness. I also want them to consider that when they are gearing back to their normal life we are still suffering and not getting back to our ‘normal life’ because we can’t have access to treatments as it feels most of the NHS’s time is going into combatting COVID-19."


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