Manifesto - What people said

What people said....

• Over 6 million people in the UK suffer from bladder and bowel problems.

• Continence problems can affect men and women of any age

• There is a lot that can be done to help, but many people still suffer in silence

Eighteen UK patient and carers organisations asked their members what help they needed for these distressing conditions. The Manifesto for Continence summarises what people said.

People with incontinence live in fear and shame. The condition is still taboo. People are afraid of having an accident but embarrassed to ask for help. Attitudes of others often cause more problems than the condition itself.

People with continence problems want their conditions treated like any other medical condition. Why should we live in fear and shame when these conditions are so common?

"People’s reaction to my problem is horrible. They laugh or snigger or make rude remarks. But I suffer from a medical condition like many others…except it affects my bowel. I wish society would accept that continence problems are not indecent - they need to be treated like any other medical condition." - Jayne Russell

Public toilets everywhere are being closed down or left in a poor state. New developments and shopping centres often have inadequate facilities. Disabled toilets are inaccessible; facilities are dirty without soap, paper or towels.

People with continence problems want decent toilet facilities. We need them in shops, high streets, petrol stations…all public places. Facilities should be accessible, properly maintained and cleaned.

"I no longer go on trips due to the lack of toilet facilities. I only go shopping when I absolutely have to - most of my life is mail order." - Phil Morley

Health services

Health services help some people with continence problems although many are cared for by members of their own family. There are specialist continence services but many people don’t know they exist. Too often, the chance for effective help is missed. There is little training for most health workers on incontinence. Many do not have the skills or motivation to deal with this common problem.

People with continence problems and their carers want health workers who know about incontinence. We want to receive good advice and sound treatment. Why should we be passed onto a hospital waiting list when the GP or Continence Advisor could provide good treatment? Why should cost determine which products and treatments we receive? We want help that is based on individual need and sound evidence, and we want to know the risks and the possible side-effects too.

"My husband Malcolm has Alzheimers. He started using incontinence pads simply because staff wouldn’t help him to get to the toilet. They didn’t seem to have the time. Now even the supply of pads is being rationed and I have to buy extra ones myself." - Barbara Pointon

Information and treatments

So many people are left with incontinence. Many have had some unsuccessful treatment or are using products that just don’t do the job. Many more have never been offered any help. Millions of people don’t know that there is help available, or that there is a choice of treatments in many cases.

People with continence problems want to find out. We want to know what causes these problems and what can be done to help. We want clear, simple information and explanations. We want to be offered appropriate treatment and effective products - and to have our concerns and experiences listened too.

"I’ve not been given any clear explanation of the treatments that are available - it’s been left in limbo. I feel as if I’m stuck with this problem for life. The impression I get from doctors is ‘this is what you’ve got - put up with it’. I seem to get different advice from different people - it just leaves me confused and frustrated." - Joanne Chinnock

The Manifesto for Continence is supported by:

Age Concern England

Alzheimer’s Society

ASBAH

British Colostomy Association

Carers National Association

Counsel & Care

ERIC

Help the Aged

ia

IBS Network

Incontact

Interstitial Cystitis Support Group

MS Society

National Association of Diverticular Disease

Prostate Help Association

Spinal Injury Association

Urostomy Association

Women’s Health

The Manifesto for Continence has been supported by Galen Ltd, Pharmacia Ltd and Sanofi Synthelabo Ltd and Ogilvy Public Relations Worldwide.