How to get involved

Patient and Carer User Groups

We believe that involving patients and carers helps us think about things from your point of view and can help us improve the services we provide.

We have patient/carer partnership groups embedded in our services, where staff and patients work together to improve the hospital experience for everyone and meet the needs of the local community.

User groups involve:

• patients
• carers and families
• representatives from voluntary and community groups
• members of staff

They meet regularly throughout the year and focus on supporting improvements in patient services.

These are our User groups – is there one that interests you?

ACTIVE – for children and young people

Want to make a difference for kids at Addenbrooke’s? Got any bright ideas? Aged 8-18 years?

If yes, why not join ACTIVE?

Who are we? We are children and young people just like you. Active is a ‘good opportunity to  meet new people, good to see how your ideas develop and get considered and make a difference for patients at CUH’ ;

‘Some of us are or have been patients, some of us are thinking about working in a medical career, some of us are just interested and want to make a difference. The key idea for ACTIVE is that no one knows what a child wants or needs better than a child.’ Voices of Active leaders.

Cancer Patient Participation Group

The Addenbrooke's Cancer Patient Partnership Group (CPPG) is a group of patients and carers who work with hospital staff to improve cancer services by sharing the patients’ views and raising concerns on their behalf.

Hepatology Patient Experience Group (HPEG)

The purpose of the Hepatology Patient Experience Group (HPEG) is to ensure that Cambridge University Hospitals (CUH) NHS Foundations Trust’s hepatology department takes account of the views, opinions, and experiences of the patients and carers who use their services.

Feedback from hepatology patients will help us improve our services and better meet the needs of the local community.

Whether your experience has been a little or a lot, we invite you to join us. Please email the Hepatology Patient Experience Group for further information.

Inflammatory Bowel Disease patient panel

The Addenbrooke's Inflammatory Bowel Disease (IBD) Patient Panel gives patients a voice. The panel also serves to provide feedback to the IBD staff team at Addenbrooke's in order to find ways to develop a better patient-experience in the hospital. The whole panel’s objective is to improve provision for all patients with Crohn’s and colitis who are looked-after at Addenbrooke's. The panel usually meets four times a year. Meetings are currently held either at the hospital in the boardroom or via Zoom. The lead IBD consultant, senior IBD nurse and the IBD psychologist all attend panel meetings, but the panel is very much patient-led.  

It is very important that the panel represents the diversity of the whole IBD patient population at Addenbrooke’s and it is particularly important to have representation from carers, visible and invisible minorities. You don’t have to have had any experience of being a part of a panel nor do you have to have any special skills to participate in the panel. If you have cared for someone with inflammatory bowel disease, or if you are treated for Crohn’s disease or ulcerative colitis at Addenbrooke’s, this qualifies you to join the panel. Please email the IDB patient panel for more information.

Maternity Voices

We are a group of local parents, doula and birth worker volunteers representing the voices of birthing women and people, their partners and families to improve and develop maternity and neonatal services at the Rosie Hospital.

MyChart Stakeholder Group

Can you help shape and improve MyChart, the CUH patient portal? MyChart allows patients to securely access parts of their health record within the hospitals’ Epic electronic patient record system, including upcoming appointments, clinical correspondence and test results and to improve communication between patients and their clinical teams. We welcome patients who would like to get involved in helping to drive the operational use of MyChart across the Trust. The group reviews and approves any proposed design and functionality changes to MyChart, monitors patient and staff feedback and determines appropriate actions to address any concerns. Identifying opportunities to improve MyChart to ensure it remains user-friendly is also a key priority. If you would like to find out more and join the group, please email the patient experience team.

Outpatient Experience Group

The Outpatient Experience Group (OEG) is a group of patients, patient governors and staff, supported by members of the outpatient team. It meets monthly and influences service provision for patients, reviewing patient feedback, and offers the opportunity to be involved in outpatient projects and the crafting of information for patients, such as outpatient appointment letters.

OEG is always looking for new members to help improve outpatient services.  Members can be involved at a level of activity that suits them and can give their input via email, telephone or in person at meetings. We are keen to welcome representatives from LGBT+, BAME and Armed Forces communities to ensure we have a diverse group of voices.

We welcome patient feedback and also enquiries to join the group. If you would like to join the group, or have something you feel they should discuss, please email the patient experience team.

Reader panel - patient information

It can be overwhelming to take everything in during a hospital visit. A leaflet can be essential to help patients understand their condition and any further treatment, as well as any follow-up information.

The Reader Panel makes a difference to a patient’s hospital experience by helping to ensure that the leaflets they receive contain information that they can understand.

Members of the Reader Panel provide feedback on a leaflet’s readability. Panel members review leaflets to ensure they are appropriately written and do not use too much jargon or terminology, so that any patient can easily understand the information they have been given.

Leaflets are emailed to Reader Panel members to review at home in their own time, providing their feedback within seven days.

If you are interested or would like more information please click on the blue Reader Panel - patient information leaflets link above, email the Trust Documents Team, or call 01223 274685.

Trauma East Voices (opens in a new tab)

Major Trauma kills 14 people each day in England and is the leading cause of death for people under the age of 40. Thousands more are left with lasting disabilities. The NHS is tackling this by coordinating care for the most seriously injured across Networks. The East of England Trauma Network is responsible for improving care for major trauma patients throughout the six counties of Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Norfolk and Suffolk. We bring together all the NHS services involved in the care of the seriously injured person, from the ambulance service responding to the 999 call to the rehabilitation services providing ongoing care and support. We work with all providers to improve care, reduce disability and reduce deaths from major trauma.

We are interested in hearing about the experience of patients and their loved ones using the trauma system in the East of England. We have created the Patient Experience Group, Trauma East Voices, who meet regularly to discuss this, highlight great care and suggest improvements. Please come along to our next meeting and share your story with us, because your feedback matters and helps us to make a difference. For details of the next meeting, visit their website (opens in a new tab) or call: 01223 257290.

Patient and Carer Focus Groups

From time to time we also run service specific focus groups for one off topics, where groups of patients, carers and staff come together to talk about what went well and what didn’t go well and how things can be improved.

You may get an invitation to one of these events as we often invite a random selection of patients so that we get a diverse range of feedback and improve our understanding of the patient experience.

If you would be interested in participating in a focus group we also hold a list of patients who have expressed interest in this kind of involvement, so that we can contact and invite them when we are organising an event. If you would like to be added to the list and consent to us holding your details securely on file, please contact us using the details below.

If you are interested in finding out more about getting involved, or would like to help set up a new patient partnership group, please email the patient experience team or phone the Patient Engagement and Surveys Team on 01223 274874.

Contact details

The Patient Engagement and Surveys Team can be contacted between the hours of 9am to 5pm, Monday to Friday.

Email the patient experience team
Telephone: 01223 274874

In writing:

Patient Engagement & Surveys
Box 150
Cambridge University Hospitals NHS Foundation Trust
Addenbrooke's Hospital
Cambridge Biomedical Campus
Hills Road
Cambridge
CB2 0QQ

The CUH PPI Panel

The Cambridge University Hospitals Patient and Public Involvement (CUH PPI) panel was set up to connect members of the public interested in health research with researchers working on the Cambridge Biomedical campus. Our panel members’ feedback and contributions help to make our research more relevant, more accessible and more likely to succeed in the real world.

There are currently more than 70 members of the public on the panel, who all live in and around Cambridge and who between them cover a range of ages, ethnicities, occupations, experiences with illness and the NHS, and research experience. Panel members are free to decide which projects they want to get involved in, and no prior experience or research knowledge is required.

Find out about public involvement in research and joining the CUH PPI panel (opens in a new tab).