Aims/Objective To discuss the findings of a small research project about knowledge of urostomies amongst health care professionals (HCPs). Background The lead author's urostomy was formed in 2015. From early dealings with HCPs, it was clear that knowledge about urostomies was lacking. In particular, many do not know how to take an uncontaminated urine sample for testing. This has led to treatment delays, anxiety and frustration and caused the author to question care she had received. Discussions with other patients suggested a commonality in experience. Method and findings Working with a researcher from a UK‐based stoma charity, we conducted a small qualitative survey of urostomates via a Facebook support group. This asked the question: “How knowledgeable have you found Healthcare Professionals about urostomies?” 52 patients responded. Of these, 50 indicated that lack of knowledge was normal in encounters with HCPs. While in some clinical settings this is understandable, it was notable that some respondents recorded instances where staff on urological wards seemed to confuse a nephrostomy with a urostomy. Conclusion Urostomies are rare. It is estimated that 10 000 people in the United Kingdom have a urostomy, compared with between 110 000 and 120 000 with colostomies/ileostomies. HCPs encounter few during their career. Finding a way to embed knowledge and keep it up‐to‐date is therefore central to the problem. Our project has provided the impetus for larger scale research, with the aim of addressing this issue and improving the treatment and care that patients with urostomies receive.

Patient advocate Rachel Jury, Colostomy UK's Richard Biddle and researcher John McGrath introduce the results of a preliminary study on how much health professionals know about caring for urostomates

In September 2014, the physiotherapy regulator for England and Wales (Health and Care Professions Council) introduced an education and training standard requiring service user and carer involvement in all approved programmes (HCPC 2018) including physiotherapy. Despite this, a scoping literature search on the involvement of people with lived experience in physiotherapy education and training returned only two results (Thomson and Hilton 2011, 2013), both of which pre-date the regulatory requirement. This means that there is no documented scientific literature on a client's lived experience involvement in a physiotherapy course since the introduction of this standard.

Public and patient involvement (PPI) has increasingly been considered a vital part of shaping clinical services and health research. For some hospitals it is a legal requirement and in areas such as grant funding, is a highly desirable component of a successful application.