Useful information for patients and carers

Sources of help

Source: the NIHR Photo Library

There are a number of charities, which provide help advice and support for people affected by brain injuries.


  • Physiotherapy Priority Setting Partnership survey: The James Lind Alliance, The Chartered Society of Physiotherapy have launched a ‘Physiotherapy Priority Setting Partnership’ survey, to share what you consider to be most important, whether Patient, Carer or Healthcare Professional click here.
  • Improving the Experience and Care of Newborn Infants at Risk of Brain Injury through Technology: This survey is the first step of a process to identify research areas and clinical unmet needs regarding the experience and the care of newborn infants at risk of brain injury through development of technology. Click here to participate!
  • in collaboration with the University of Cambridge are inviting patients with cervical myelopathy, or their carers, to participate in an online survey to support the establishment of an online support community. Click here to participate!
  • Ticker fit: They would like to talk to teenagers living with cystic fibrosis (age between 12-16) and their parents and carers to understand how it feels to live with Cystic Fibrosis and how it affects their day-to-day life so that we can design new digital solutions to make their life easier. If you would like to take part in the survey, please visit their website
  • Digital Technology for mental health: Asking the right questions: This short survey from James Lind Alliance may be of interest if you would like to submit your views to help shape priorities for mental health research using digital technologies in the future. It takes less than five minutes and there is a short video explaining the project.

Take part in research

  • People in Research: Opportunities for public involvement in NHS, public health and social care research. People in Research connect members of the public who would like to get involved in research and researchers who want to find members of the public to get involved in their research.


  • TBI TALK: an opportunity for patients, carers and other interested parties to learn about the research that’s going on in traumatic brain injury. Have a look at their website:


  • INVOLVE Newsletter: INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated. You can read more information about their activities and events on their newsletter.
  • PPIE annual reports: The NIHR Central Commissioning Facility (CCF) have extracted and compiled the PPIE sections of annual reports for 2014/15 and 2015/16 and made them publicly available. By doing so, they aim to support and promote the sharing of knowledge, learning and good practice across the NIHR and beyond. You can read the PPIE annual reports on the NIHR website.
  • Headway Cambridgeshire Winter Newsletter 2017, including a piece about the art auction that was supported by the NIHR Brain Injury HTC.
  • Stories From Headway Cambridgeshire: read stories from Headway clients by clicking here.
  • The September 2015 issue of AANS Neurosurgeon ‘Neurosurgery: From the Patient’s Perspective‘ focuses on patients, their families and the hardships they endure in the face of neurological conditions and injuries. Click here to read the table of contents.
  • CUHP Public & Patient Involvement Bulletin #4 is available online! Click here to find out more about events and dates for 2016.
  • The NIHR Devices for Dignity HTC (D4D) held their first Patient-led Event in June 2015, the culmination of months of preparation and public, patient and carer engagement, and a national independence and dignity survey. For more information about the event, read the report or watch the video below.
  • Research & Development Department Newsletter: October 2017