The steering group

ICU Patient and Relative Support Group Terms of Reference
(ICU Support Reading – Patient and Relative Steering Group and Recovery after Critical Illness (RaCI) service aligned to the Royal Berkshire NHS Foundation Trust)

 1. Aims

The Support Group and Steering Group exist to:

• Provide support for all patients and relatives during the patient’s time in ICU, as well as, after transfer from the unit and discharge from the Royal Berkshire Hospital.
• Offer a safe and supportive environment where patients and relatives can share experiences to aid recovery.
• Ensure the group is underpinned by professional support from ICU-trained staff and the Recovery after Critical Illness (RaCI) team.
• Provide open access to referrals from other hospitals.
• Promote an open, transparent, and inclusive culture where patients and carers can actively contribute.
  
  

2. Scope

• Open to all former ICU patients, families, and carers from any hospital.
• Facilitated by the ICU RaCI team (multidisciplinary staff involved in rehabilitation after critical illness).
• Supported by patient and family representatives to ensure lived experience shapes content.
• Delivered through in person meetings at Maiden Place Community Centre.

   

3. Values & Principles

The group will be guided by the following principles, aligned to the Royal Berkshire NHS Foundation Trust’s C.A.R.E values (Compassionate, Aspirational, Resourceful, and Excellent):

• Patient and family-centred: lived experiences shape planning and delivery.
• Clinically supported: underpinned by ICU-trained professionals to ensure safety and governance.
• Inclusive and respectful: all voices are valued, and all members are treated with dignity.
• Transparent and accountable: decisions are made openly and responsibly.
• Recovery-focused: supporting the physical, psychological, and emotional recovery of ICU patients and their relatives.

   

4. Steering Group Membership

• Membership is open to former ICU patients, relatives, and carers, alongside members of the RaCI team. Other healthcare professionals may be invited or appointed with the agreement of the group.
• There is no formal limit on the number of members.
• Recruitment to the Steering Group may take place flexibly throughout the year when expressions of interest arise or when existing members step down. A written application process will allow interested individuals to apply directly to the Steering Group, ensuring transparent and fair opportunities for participation and renewal.
• A typical term of involvement is three years, after which membership will be reviewed and may be renewed by mutual agreement.
• The group will not have a formal Chair; instead, leadership responsibilities will be shared among Steering Group members and RaCI clinical staff on a rotational basis, ensuring balanced input and collaboration.
• Recruitment will be transparent and inclusive, ensuring diverse patient and carer representation.
• Steering Group member expectations and responsibilities:
• To support the effective delivery of quarterly ICU Support Group meetings.
• Act as a point of contact for the ICU Support Group members.
• Attend Steering Group meetings twice a year (May and November), actively participating in discussions, decision-making, and ongoing development of the Support Group.
• Promote engagement and inclusivity by encouraging participation from patients, relatives, carers, and staff, and helping to maintain an open, welcoming environment.
• Contribute to continuous improvement by reviewing Support Group activities, providing feedback, and supporting updates to process, resources and communication channels.

Uphold the values and purpose of the ICU Support Group, ensuring that activities remains patient-centred, respectful, and aligned with the organisational governance.

5. Meetings

• Quarterly support group meetings will be held.
• Presentations, guest speakers, and activities will be agreed by the Steering Group in advance.
• Meetings may include:
  • Peer discussion and sharing of personal experiences.
  • Education sessions (e.g., fatigue, nutrition, mental health, physical recovery).
  • Guest speakers (healthcare professionals, charities, patient advocates).
  • Relaxation/wellbeing activities.
  • Meeting information will be shared on the ICU support Reading website.
•          Risk assessments will be carried out as needed in line with the RBH NHS Trust policy and local risk assessment requirements.
•          Electronic equipment – all electronic equipment will be PAT tested by the RBH NHS Trust
•          Food – will be labelled with all ingredients to ensure that allergies are identifiable.
•          First aid – First aid boxes are available at Maiden Place Community Centre.  RaCI staff are available to administer support if required.
•          Fire – attendees will be made aware of fire exits and designated fire assembly points.

   

6. Funding

• All costs of the group and its meetings will be covered by the Royal Berkshire Hospital Charity, ICU fund.
• Expenses will be reimbursed upon submission of claim forms in line with Trust and Charity policy.

   

7. Website & Communications

• The ICU support Reading website is aligned with the Royal Berkshire Hospital and will include contributions from the Steering Group.
• Website content will be reviewed yearly to ensure current and meaningful information is available to patients and their families.
• All communications will be accurate, inclusive, and respectful of confidentiality.
• Group communications may include newsletters and leaflets.

   

8. Equality, Diversity & Inclusion

• All patients and relatives will have equal opportunity to join the Steering Group and/or attend meetings.
• The group will adapt to ensure accessibility and inclusion for all, including those with additional needs.
• The Steering Group will actively engage with patients, relatives, and carers to ensure the group meets the needs of its diverse community.

   

9. GDPR & Confidentiality

• The RaCI team complies with the UK GDPR and Data Protection Act 2018.
• Personal data (e.g., names, contact details, feedback, health experiences) will only be collected by the RaCI service members of staff if needed they will not be shared with the wider support group.
• Data will be:
  
  • Stored securely in line with NHS Trust policies.
  • Shared only with authorised staff.
  • Retained only for as long as necessary.
• Members will need to provide consent before their contact details are stored or used.

   

10. Safeguarding & Clinical Boundaries

• The group operates with clinical oversight from the RaCI team and ICU-trained professionals.
• It is not a substitute for individual medical care. Members with personal clinical concerns will be directed to their healthcare providers.
• If safeguarding concerns are raised, staff will follow NHS and Royal Berkshire Hospital safeguarding procedures.
• Peer support is encouraged, but professional therapy or counselling will only be provided by appropriately trained staff.

   

11. Insurance & Liability

• Insurance and liability for activities will be provided by the Royal Berkshire Hospital NHS Foundation Trust (RBHFT), subject to the following conditions:
  
  • The activity/event is an RBH-organised event.
  • The activity/event is supported by RBH employees.
• Activities falling outside these parameters may not be covered and may require independent risk assessment and insurance arrangements.

   

13. Review

• These Terms of Reference will be reviewed annually by the Steering Group.
• Feedback from patients, relatives, carers, and staff will guide improvements.