Abstract

Background
An increasing number of people live with permanent tracheostomies, and care is well-established in acute settings. There is little information regarding community services and support, including patient and family experience. An NIHR Yorkshire and Humber Patient Safety Research Collaboration (YPSRC) grant awarded to the author enabled a scoping exercise into these issues.
Aims
These were to evaluate the provision, structure and funding of tracheostomy services in the community around the UK, to understand patient and family experience of living at home with a tracheostomy, and to inform future research through this collaboration between clinical and academic teams.
Method
After an initial literature review, a preliminary scoping exercise was undertaken to investigate existing community tracheostomy support services and carried out by an email questionnaire to a national tracheostomy network group (currently 42 Trusts represented). Responses were collated and analysed.
Face-to-face semi-structured interviews were carried out with patients and their families living with a tracheostomy, by the author and a researcher from the YPSRC. Responses were collated and organised into themes.
Results
Questionnaire responses came from 25/42 (59.5%) Trusts. Ten identified the existence of some level of community service. There was great variation in the actual services provided, and a lack of clarity or knowledge around how services were funded. Only 4 were ICB funded.
Six people living with a tracheostomy, and family members were interviewed. The themes identified were: care provided; training for discharge from acute Trust; experiences and emotions of person living with a tracheostomy; and experiences and practical factors for family members.
The interviews identified the fragility of the systems in place once home. Transition from Children’s to Adult services was difficult, and it was reported that GPs and District Nursing teams have little or no experience of tracheostomy care.
Conclusions
Information regarding services showed inconsistency, underfunding, and fragmented care pathways, causing significant health inequalities and risk.
Patient and family interviews showed informal care playing a vital role for family units and society. Minimal specialist healthcare input was available to some, with no service provision for others. Areas for future research were identified.