As part of our work we look after patients who are affected by issues relating to their bladders in childhood. Some are born with conditions such as bladder exstrophy or posterior urethral valves, others may have neurological problems like spina bifida which may affect bladder and bowel function. Some may develop changes in the way their bladders work as a result of conditions that arise in childhood – eg. infections, some forms of tumour or injury as a result of trauma. These conditions can have a profound effect on continence and may need major surgery to treat them.
Most of these conditions are rare but for those affected there are some important messages.
Whilst doctors are always looking to develop ideas to further improve care, the treatments for these conditions that exist today have made a huge difference to the quality of life that many patients can expect to enjoy. It is important to know that whilst there may still be some challenges to manage; many people live very happy, healthy lives. As healthcare professionals we try to support individuals to become experts in their own condition and what has happened to them. This allows them to describe their condition, the surgery or other treatment they have had and what has gone wrong. Some may be able to describe or even undertake the first steps in what to do when things go wrong.
It is important that everyone knows when to seek expert help and how to get hold of those who can help them if needed. This comes as part of the long-term care and regular follow-up that is vital for everyone to get the best from their body and to avoid as many problems as possible.
This gives anyone affected by these conditions a huge amount of independence, allowing them to socialize with friends, fulfill their full educational potential, engage in relationships and (for many) to have children. As a child, who has been affected by any of these conditions, grows up there are questions and at times fears about what life will hold for them. These are questions that we all ask ourselves but the added concerns about their condition or its treatment may amplify some concerns. Without the right care the effects of these conditions or the side effects of treatment that might include urine infections, incontinence or kidney damage. This means patients need the right support from healthcare professionals and the healthcare system. In everyday life appropriate toilets are needed to allow people to catheterize themselves or sometimes change bags in a timely and private manner.
Christopher Woodhouse and I carried out an audit to look at what our patients were doing in 2010 (see Table 1) 1. They are adult patients many of whom have been affected but conditions they were born with and, as a result, have needed complex surgery. We found that only 8 % were unemployed and around two-thirds were working in professional or skilled jobs. They are an extraordinary group of patients to work with – courageous, persistent, determined, knowledgeable and often achieving great things.
Much more research is needed to help us as professionals to continually improve our care for these patients and deliver the best possible outcomes.
