‘A lack of understanding’, ‘a need to educate’, ‘avoid embarrassing situations’; these are just some of the reasons why a group of people living with a stoma have joined forces and are calling for changes to be made within society, with the help of Cardiff based Pelican Healthcare, one of the UK’s leading manufacturers of disposable medical products in the UK and Ireland healthcare markets, and its sister company Respond Healthcare, specialists in stoma and continence care, providing a prescription dispensing service throughout the UK.

Coming together from across South Wales, the action group has called for Wales to lead the way nationally and for Cardiff to become the capital of the UK for understanding the needs of people living with a stoma and more widely invisible illnesses. They also want Local Authorities across Wales to adjust waste collections in recognition of the issues people with a stoma face.

The action group consists of a mix of people of all ages and backgrounds from different locations across South Wales, including, Cardiff, Newport, Llanelli, Bridgend, Abergavenny and Swansea,

It has been assembled at a time when it is estimated that approximately 10,000 people across Wales live with a stoma, an opening in the abdomen that can be connected to either your digestive or urinary system to allow waste (urine or faeces) to be diverted out of your body and collected in a bag after part or all of the bowel is removed due to disease or obstruction.

However, there is a lack of understanding of the difficulties people living with a stoma face on a daily basis. With this in mind, the group, with the support of Pelican and Respond Healthcare are asking for changes to be made in daily society including, new signage to be used on all public toilets in Cardiff, and hopefully across Wales, that signifies not all chronic illnesses and health issues can be seen.

It is hoped this signage would replace the current use of a figure in a wheelchair and reflect the broad range of reasons why someone would need to use the larger, accessible toilet facilities, which transcends physical disabilities that are in plain view.

Secondly, the action group wants to tackle the inconsistencies between Local Authorities across Wales when it comes to collecting waste from the homes of people living with a stoma. Currently, only six councils in Wales address stoma waste in special absorbent hygiene collections, while the remaining 16 Local Authorities tell people to use the household bins, which are collected about every two weeks.

These issues cause many problems for people living with a stoma, as group member and Cardiff Metropolitan University student, Amber Davies, 21, from Builth Wells, explains:

“I have experienced a great deal of misunderstanding and therefore negativity towards me because of my condition. I use the toilet facilities labelled disabled as I need the bigger space and privacy managing my condition requires, but quite often as I leave the toilet, I am verbally abused by people who think I have taken advantage of the facilities and don’t need to be using them. I have also suffered negativity from security staff when out socially, who questioned my use of the accessible toilet and accused me of taking drugs. These are classic examples of my illness being invisible to people and therefore misunderstood on a daily basis.

“Also, of huge concern to me is the issue of waste collection. I live with fellow students and because of my condition, use up most of the space in the black bin very quickly, which is collected every two weeks. There needs to be greater understanding and recognition from Councils of the needs of people living with a stoma.

“Some Local Authorities fine you if you produce too much waste but this needs to be looked at and addressed Wales-wide. It is simply unfair the way the current system operates and it does not address concerns many people such as myself have.”

Pelican and Respond Healthcare are supporting the action group and aiming to work with the Welsh Government and Cardiff Council to start addressing the issues being faced by people living with a stoma and Mat Stratton, Pelican and Respond UK MD explains action needs to be taken quickly:

“We are calling for changes as this affects many people in Wales but also many visitors and tourists Wales receives each year. We want Cardiff as a capital city to lead the way and become an exemplar of understanding and progressiveness and I don’t feel we are asking for too much. People are experiencing issues every day that can be tackled and fixed in a very positive way and we will be working with charities and associations to form one unified voice in calling for change.”

Pelican Healthcare offers a wide range of innovative ostomy and continence products, including pouches, skin care products, support garments and other lines and through its sister company, Respond Healthcare, provides dispensing, home delivery and support services to the stoma and continence care community.