ICU patients and relatives are they really listened to? - Providing opportunities for ICU patients in an Acute Trust to engage with the multi-disciplinary team to ensure they are truly heard and translating this into meaningful action

University Hospitals of Leicester NHS Trust

Contact: Jo -


University Hospitals of Leicester (UHL) was formed in 2000 and provides acute hospital care across three main sites, the Leicester Royal Infirmary, the Leicester General Hospital and the Glenfield Hospital. Community based healthcare is also delivered to the one million residents across Leicester, Leicestershire and Rutland.

The Trust has a very strong research portfolio and is at the forefront of many research programmes and new procedures, such as keyhole heart valve surgery. UHL has an international reputation for the high quality specialist care given by over 15,000 staff, especially in cancer, renal and cardiac services, which serve a further 2-3 million people across the rest of the country.

General Summary

Inviting patients and their families who have had an ICU stay to attend a meeting 6-12 months after their discharge has provided multi-disciplinary teams within the units an opportunity to create an informal safe space for feedback and to ensure that patients are truly listened to. The ICU Patient User Days provide a collaborative and open forum for listening and learning. To ensure that we are turning listening into action we are supported on these days by 2 of our Patient Partners who lead the event. As the User Days increased in number and we received more feedback and ideas from our patients we expanded invites to representatives outside of our own CMG to enable us to improve as much of the whole patient journey as was possible. This dedicated engagement has resulted in a host of improvements for patients including the introduction of patient diaries, memorial afternoons, improved information and reducing anxiety about ICU admission and discharge to step down areas. For example; a valuable initiative was to develop a video for patients and their loved ones to view if they so wished about what to expect and familiarise themselves with the type of environment.


We regularly review all feedback comments from our patients and relatives via a variety of methods (direct, cards, FFT, Message to Matron to name a few). We acknowledge that an admission to an Intensive Care Unit (ICU), via any pathway, can be a daunting experience for patients and their loved ones. Collecting Friends and Family feedback at the point of an ICU discharge provides a good opportunity to assess the quality of our care and services but as a multi-disciplinary team we were very aware that it is often after discharge and a period of reflection that both patients and families may have many questions and ideas that they wish to share. The Patient User Days were an innovative response to this reality and were supported and created via our monthly CMG ‘Patient Experience Group’ meeting. To ensure that there was a balanced review of feedback we worked very closely with our Patient Partners. Patient Partners are members of the public who have been appointed by the Trust to provide a lay patient and public perspective on issues across all areas of the Trust and the Patient User days are led by the Patient Partners. The initiative came about because we wanted to make a real difference and develop actions that were led and directed by our patients. This initiative has enabled collaborative involvement with the users of our service and enabled a variety of opportunities for us as a Team to turn this listening into action. We also wanted to ensure that the many new staff that we have within the ICUs were given a real opportunity to see the value of patient feedback and to ensure as they progress through their careers that this is always of the highest priority.


The Patient User days are predominantly organised by the Senior Sisters on the ICUs who have ‘Patient experience’ as part of their senior responsibilities with the involvement of our Patient Partners.

Patient Selection: We normally choose up to 50 patients at random from patients who have been on ICU for more than 48 hours. The list of patients is generated and then checked against the NHS Spine programme to ensure there are no patients that have sadly passed away after their ICU stay. This is always done prior to the invitation and confirmation letters being sent. The letters invite not only the patient but also a family member, friend or carer to the User Day.

Organisation of the day: We apply via our charitable funds application scheme to provide light refreshments and free car parking for attendees. An appropriate venue is sort by the Sisters and booked well in advance of the day. A variety of staff from the multi-disciplinary team agree to attend the day and this includes all bands of Nurses, Physiotherapists, Occupational Therapy and medical staff. Other Specialists are invited as we feel appropriate from feedback, such as a Dietician.

Objectives of the User Days:

  • The main focus of the session is to gain feedback about the patients stay whilst they were in ICU and also explore the step down experience to their next area of care. This enables us to obtain their views on their wider hospital experience.
  • To help explain/give answers to questions that arose utilising the ICU and ward teams that attend.
  • To use the feedback to enhance the ICU/ward experience for future patients.

Our Patient Partners lead the session and focus on the following areas for patients to provide feedback:

  • Pre-operative experience
  • ICU stay experience
  • Ward and discharge experience.
  • The themes of communication, medical and nursing staff and environment are also discussed.

The room is set out with tables, each with a member of staff on it to be able to discuss issues with patients and then help feedback to the whole group: this approach has proven to work really well. The Patient Partners normally stand at the front and lead the questions and capture all feedback on flip charts. All of the feedback is then viewed by the ICU multi-disciplinary teams and Patient Partners to devise clear actions and feedback. At the end of the session we always invite the attendees to complete an evaluation form and to date these have always been rated as ‘good’ and ‘very good’. Patients are also given the facility to email one of the Senior Team with their views if they couldn’t attend the User Day.


The initiative has seen many positive changes to improve our patients and loved ones ICU experience. As a result of the feedback to name but a few, we have introduced the following:

  • ICU Follow up clinics
  • Patient diaries
  • Memorial afternoons
  • Undertaken ’15 Steps Challenge’ in all ICUs with our Patient Partners and made positive environmental improvements e.g. enhanced appearance on entering the units, improved waiting areas, quiet rooms, relatives accommodation, step down information and a video of what to expect on an ICU stay, increased MDT input (e.g. Physio and OT), noise reduction (introduced night bundle), simple posters to explain equipment, post ICU longer term recovery information leaflet, improved signage, eye care audit and care bundle developed.
  • Introduction of ‘Pat Dog’ therapy
  • Introduction of monthly case reviews to ensure that patient’s relatives understand the care they received and reasons for their loved ones passing. We then invite them back to a follow up clinic.

We measure success of the initiative by monitoring our ‘Friends and Family’ Test scores monthly, direct feedback, Message to Matron cards, feedback at follow up clinics and the all-important patient feedback following some of the improvements above. We have seen over the last 12 months an FFT score of between 97-100% recommending our ICUs, we have seen few complaints and the promotion of our collaborative working with our Patients and Patient Partners has seen a positive impact on recruitment and retention, low turnover and all units being fully recruited to.

Standing Out

Creating an environment that is safe, informal and supportive. The ICU User days really demonstrate what a difference it makes to so many patients to be able to not only share their experience with the staff but to share experience’s between themselves and their loved ones. It has provided a real sense of camaraderie. The key elements to its success are the dedication of the MDT and Patient Partners to truly listen to their patients and have a dedication and passion to make improvements. The staff also feedback that the User Days really help them to define their roles and focus on success and improvement; be it the smallest things that are always often the most important to our patients and family.

Key Learning Points

  • Do not be fearful of holding such an event, remember all feedback is valuable and we learn from the positives and negatives.
  • Quick wins are often those that we just never noticed!!!
  • It is a big morale booster
  • You must have dedicated leads to organise User Days and always check the NHS spine to ensure no invite letters are sent to those patients that may have sadly passed away post discharge.
  • Get your Patient Partners involved as they provide an independent lead.
  • Provide an update on actions to those that attended.
  • Use an evaluation sheet at the end of the session

Watch the Presentation Here: