Thank you for your help in demonstrating the feasibility and supporting the design of this trial.
Study outline
Of the 120,000 patients a year that survive critical illness, 98% are left with impairments in physical function, resulting in loss of physical independence. This physical impairment is often accompanied by psychological and cognitive impairments, the constellation of which is called Post-Intensive Care Syndrome (PICS). At 12 months, 70% of survivors have substantial functional limitations and 30% remain carer dependent. One third of previously employed critically ill patients do not return to work within five years. This in turn effects the mental, physical and financial health of their caregivers, meaning PICS is now recognized by the National Institute of Health and Social Care as a serious public health issue.
Patients with PICS need an average of five different specialties to address their rehabilitation needs, falling outside traditional care pathways. This affects their re-integration into society following hospital discharge. Aside from healthcare, patients are likely to need support from third sector agencies (e.g. Citizens Advice, Age-UK, Samaritans) in dealing with the economic (e.g. loss of employment) and social consequences (e.g. loss of housing, need for Universal Credit) of surviving critical illness, while simultaneously dealing with their new functional limitations. The responsibility of navigating this convoluted path of recovery often sits with patients and carers alone, with the end result ultimately being a sense of abandonment. This is something highlighted by patients, with one survivor stating, “we are no-one’s problem”.
The ongoing financial impact on social care, patients and carers has not been described within the UK. We are setting out to build the economic case for community rehabilitation and reintegration programmes for critical illness survivors. We aim to do this by describing the ongoing financial impact of community health and social care use, and the economic support required as a result of patient and carer loss of employment. This is an ambitious project but we need to demonstrate this financial cost to be able to make a real case for change for our patients.
We plan to recruit around 3000 patients, focussing on those with two or more ongoing rehabilitation needs, or those with a loss of employment following critical illness. As a site you would be asked to gather initial baseline data (including financial and social data), with the remainder of the follow-up data collection occurring centrally. Payments will be calculated to realistically fund the required research nurse / staff time. To help with the design of our study, we would like you to answer the following questions.