Change is needed – a post for Fowler’s February

Fowler's Syndrome

To wrap up Fowler’s February, health campaigner and blogger (B is for Bladder) Aoife Madden, who also lives with Fowler’s Syndrome writes how change is needed when is comes to aftercare for those living with catheters and urostomies.

It feels quite exciting writing this post today on the 19th of February, as today is B is for Bladder’s 1st birthday! Exactly one year ago today, I clicked ‘go public’ on my Square Space blogging app, set up an Instagram and here I am writing a post for Healthcare Delivery Reviews! I realise I have just launched straight into this piece and that some of you may not know who I am – let me introduce myself…

My name is Aoife and I suffer from chronic bladder and urethral failure known as Fowler’s Syndrome. I was diagnosed at the age of 16 and have now had over 100 general anaesthetics due to a constant need for surgery and procedures. In the alphabet of my life, B is for Bladder.

Living a life full of medical interventions can be hard. I have struggled with the need to regularly attend hospital interrupting my life and my plans. Pain, leakages, infections and nurses being on speed dial are all part of the daily struggle. I have found it hard at times to come to terms with my now not so new, ‘plastic pal’ (catheter) having adverse effects on my body image, but now, at 27, I have realised that having a chronic illness and my body looking different (underneath my clothes) to a ‘normal persons’ doesn’t define me. I mean, what exactly is normal, right?  Yes, I have my struggles, days when chronic pain becomes too much or I miss my old ‘healthy’ self, however I want to highlight all I can do and not all I can’t, changing my outlook from disabled to enabled.

Exactly one year ago, I created a blog, a passion project, B is for Bladder, to highlight the need for people to talk about chronic health and invisibles illnesses. Sharing your story could be the key to unlocking someone else’s prison – this has been the case for some of my followers evidenced through the overwhelming amount of messages and feedback I have received over the last year.

A popular topic of conversation often turns to how much still needs to change when it comes to the aftercare that those with bladder conditions, in particular supra-pubic catheters and urostomies, receive.

Change IS needed and we need to start the ball rolling now. Young girls that follow my page, engage with my blog and join my Instagram ‘catheter tutorial’ lives are proof enough that not enough is being done to care for us in the community.

When I was first fitted with an SPC over 8 years ago, I was sent home with just one dressing – unbelievably this is still the case for many in adult services. Young girls that I speak to do not know what products are out there, the services (such as having a continence nurse) that are available to them, how to flush their bladder through or even how to shower with their new device!

This angers me. It is outrageous! How are these young women meant to get on with their lives in as near-normal fashion as possible when they are not made to feel automatous in their own care? Surely medics should be encouraging their independence and strengthen their confidence to survive in the community not setting them up to fail?

To me and many others, this is a very important topic. If I am taking distressed phone calls and answering messages from (for want of a better word) strangers who yes, I have connected with over our chronic illness similarities, at all hours of the day then answer me this: how is there not a need for a nurturing mentor/pastoral service that offers this within the NHS? There is a need. My Instagram feedback button is proof enough!

If there is anyone reading this who can help to create this role, who has the ability to help me to make a change then please do get in touch. I pride myself in being a pro-patient as I live with this condition daily: as great as they are, most urology nurses do not know what it is like to live with a catheter, to have to dress accordingly, to have to exercise accordingly and to have to adapt many more aspects of your life accordingly. I have many a handy hack and top tip to share but I’d like to work with the NHS on making a change in adult urology as no longer should patients be left feeling alone or in the dark about their future post-procedure.

Stay tuned to hear more from me as I share with you my catheter starter pack, top products and comment on delivery services in my next post for Healthcare Delivery Reviews.

Follow my journey @bisforbladder on Instagram and twitter, or listen to my fortnightly podcast – C is for Chronically Fabulous – with @solihullradio (listen live at 1.30pm every second Sunday or catch it podcasted in @spotify or @podbean.

 Written 19th February 2021


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