The NIHR Brain Injury HTC is committed to ‘Patient and Carer Inspired Innovation’ to ensure that all perspectives of the care pathway are heard. A recent initiative focused on hearing from the patients directly, which highlighted the need to hear from families and friends of those who have cared for someone admitted to hospital with a Traumatic Brain Injury (TBI).
First of all, if you are a family member or friend of someone who has been admitted to hospital with TBI, the HTC asks that you kindly complete a short survey about your experience. This will give you the opportunity to tell us about your experiences, both the ups and the downs, with the choice of anonymity. The survey findings will provide the HTC with enough details to inform the next phase.
Secondly, again if you are a family member or friend of someone who has been admitted to hospital with TBI, the HTC would like to invite you to participate in the Family & Carer Workshop on Thursday 22nd September 2016 in Cambridge Central Library. The workshop will be from 10am to 1pm with lunch and refreshments provided, and travel expenses will be reimbursed.
The workshop will be an informal discussion with family members, friends and carers to explore the anonymous findings of the survey and share their experiences following the admission to hospital with a traumatic brain injury.
If you would like to be sent a copy of the survey via email or post, like to attend the workshop, or would like more information please contact the NIHR Brain Injury HTC office (T: 01223 336940 or E: firstname.lastname@example.org).
The Yorkshire and Humber Academic Health Science Network (AHSN) and TITCH (Technology Innovation Transforming Child Health) invite children, parents and healthcare professionals to step into Dr Moon’s Inventing Room and take part in a unique Children’s Health Innovation Day to be held in Leeds on Saturday 25 June.
Children’s Health Innovation Day aims to provide children and their parents with a unique opportunity to discuss the challenges that children and young people have with their self-care and independence, and managing their condition, with healthcare professionals, academics and designers.
Using creative workshops involving everything from pens and paper to model building, event attendees will be invited to design solutions that help improve self-care and independence for children with long term conditions.
To help us develop technology which satisfies the needs of people with brain injuries, the NIHR Brain Injury HTC needs the views of patients and carers. What do you need? What is most important? To answer these questions for intensive care, we ran a survey and workshop, devised by Dr Lara Prisco and Professor David Menon at Cambridge University.
The survey asked patients and carers throughout the country who had been affected by brain injury, to tell us about their unmet needs on intensive care. The survey question was “What do we need to find out to improve the care of brain injured patients in Intensive Care and to promote survival and improve life?”
We contacted patient groups and charities that support people affected by brain injury, visited local groups of patients to discuss the survey and publicised the survey widely on social media. We had over 100 responses to the survey, on paper, online, by email and by phone. The people who contacted us had experience of accidental injury, of stroke, of brain tumour and of hydrocephalus. These brain injuries had different causes, but a common patient experience.
A team from the HTC and Cambridge University Hospitals went through every single response and identified the key issues under five themes: Service delivery, Ongoing care , Experience, Communication and Information.
Eight people with experience of brain injury, whether as patient, relative or carer came together in Cambridge to discuss the results of the survey and prioritise the issues. The workshop members were a diverse group varying in age and experience but the shared experience of intensive care meant that common ground was readily found. Workshop members added more issues to the list for the survey. Finally after intense discussion, workshop members voted for the issues they felt were the most important.
Our workshop members identified the following issues as the most important problems. These issues will be taken forward by the HTC in discussion with technology companies.
Better information for relatives and carers
Better access to physiotherapy
Improving the patient experience
Lost information when patients are transferred
Non-specialist staff not understanding the problems of people with brain injuries
Better information for patients
Please click here to access the full report on the survey and workshop!
The NIHR Brain Injury HTC Healthcare Technology Co-operative introduced a set of new technological solutions.
The session was hosted by Dr Peter Jarritt (Deputy Director, Brain Injury HTC) in Lecture Theatre 2. There were three embedded talks and demonstrations to give insights in recent developments to improve patient outcomes and experience following brain injury:
Professor Peter Hutchinson andDr Keri Carpenter of the Department of Clinical Neurosciences (University of Cambridge) talked about multi modality monitoring in neurointensive care.
Dr Topun Austin of the Department of Paediatrics (University of Cambridge) introduced ways to monitor the newborn brains in order to identify vulnerable infants at an early stage and help developing new ‘brain protective’ treatments.
Dr Srivas Chennu of the Department of Clinical Neurosciences (University of Cambridge) addressed how modern neuroscience is uncovering remarkable examples of awareness in the vegetative state and how visualisations and data help identifying crucial brain networks that could support hidden awareness in vegetative patients.