Urostomy Association: 50 years strong in 2021
Wednesday, April 22, 2020
Hazel Pixley celebrates nearly five decades of the Urostomy Association providing support for people with a urinary stoma
The UK is in the unique position of having three national charities to support the three different types of stoma:
Where we come from
The Urostomy Association was started in 1971, by a few people who felt that the differences between a urostomy and the two types of bowel stoma (colostomy and ileostomy) meant that they needed more specialist support. This is as true today as it was then, and the association celebrates its 50th anniversary in 2021.
Having a urostomy
We are the smallest of the three charities, as urostomy is not as common as either of the bowel stomas. Urostomy is most often carried out for bladder cancer, but there is a wide variety of other conditions that can also lead to the operation. It is estimated that there are around 10 000 people in the UK with a urostomy, but nobody knows the exact figure. We also cover other types of urinary diversion, such as Mitrofanoff and neo-bladder.
What we do to help
• We provide information and support, before and after surgery, in a variety of ways:
• Information leaflets, on a variety of different topics, along with other useful items such as travel certificates and disabled toilet keys
• A regular magazine, including inspirational stories from members engaged in all kinds of activities
• Local branches around the country, providing meetings with speakers and a chance for people to discuss issues they may be having. Many also organise social events
• Regional meetings in areas where there are no branches
• Trained volunteers available for one-to-one support, both before and after the operation
• Attendance at open days and other events Facebook (open page and closed group for more private discussions)
• Telephone helpline
Awareness and support
The general public knows little about stomas in general, and most people have never heard of a urostomy, so being told that you need to have one is very frightening. Being able to get information and speak to somebody who has had the operation and is living normally is very helpful for both the person having the operation and their partner/family.
Knowing that ongoing support is available is also very important, particularly in the early days, and helps people feel less alone and more part of a community. Speaking to somebody who knows how it feels to step out of the house for the first time after surgery, or spend that important first night away from home, can make it feel less daunting.
It is easy to forget, when you have had your stoma a long time, how it felt in the early days, and think that you don’t need to be involved in the association. However, we are not only there for people who are just beginning their life with a stoma.
Keeping in touch
Through our magazine, we keep our members informed about new products, and have regular articles on issues that can arise at any time, such as urinary tract infection or parastomal hernia.
Our meetings are the ideal place to meet up with others, and talk to the manufacturers and suppliers about their latest products. There are often talks by stoma care nurses/urology consultants about the latest research.
Each year, we try to run a number of one-day conferences in different parts of the country. These events are supported by the equipment suppliers and manufacturers. There is always plenty of expertise on hand to help with issues that affect us. We also have interesting speakers covering all aspects of support, including experts from the NHS.
We get involved in NHS, government and local developments that may affect stoma care and products, and we campaign for people to have all of the products that they need. We often work jointly with the other two main stoma charities to do this, giving one strong voice.
We are also members of various different groups representing people with a urostomy and ensuring that your voice is heard where it needs to be. This is particularly important at the moment, as the NHS focuses on cost savings. It is important that we speak on behalf of our members to ensure that we maintain choice of appliance.
Telephone our national office on 01386 430140 (08.30–16.30, Monday–Friday)Download Now