JLA Guidebook

Working with patients and carers

Patients, carers and the networks that represent them are diverse. Some will be used to working in a professional environment and contributing to open debate. Others may be from smaller groups of volunteers that have very little funding. Individual involvement may be dependent on the nature of the patients' condition, as well as their age group.

Some PSPs work with patients who are vulnerable or at risk, such as adults with learning disabilities and children. The Steering Group should identify if there are potential safeguarding issues that might present themselves via the survey or during the prioritisation process, such as a survey respondent indicating that they are at risk of harm. The Steering Group should decide if they need a safeguarding policy. It may be possible to use an existing policy from an organisation within the Steering Group. This should be communicated to the Partners and to anyone handling the survey data.

These are some examples of how PSPs have involved the voices of young people in Steering Groups where appropriate:

  • Holding meetings at times and in locations that fit with the young people's needs and schedules, taking school/college holidays into account
  • Having a group of young people who rotate their attendance at Steering Group meetings
  • Having a separate young people's advisory group who communicate about the PSP separately by their own chosen method, at a time that suits them, and then feed back into the main PSP Steering Group
  • Deciding that videoconferencing is more inclusive for young people than teleconferencing
  • Communicating with them outside of school/college time
  • Recruiting Steering Group members whose organisations already work with young people, who can support and buddy with young people with whom they have an existing relationship, including liaising with their parents and, for example, meeting them off trains.

Key to the successful involvement of children and young people is having the time and resources to adapt how they work with the Steering Group. INVOLVE gives some guidance specifically around involving children and young people in research and has identified a series of articles about this.

An evaluation of young people's involvement in the Teenage and Young Adult Cancer PSP (.PDF) has been published. It includes information about how the young people felt about their involvement, what worked well, and lessons learned.

It is important to identify the preferred methods of communication and involvement of patient and carer groups. While some will operate fully online, others may not use email or social media. Even for those that do, the option of receiving paperwork through the post or talking on the phone should always be offered.

Tips for inclusive communication and involvement include:

  • Correspondence should be clear, concise and easy to understand
  • Always include a named person and phone number, not just an email address, when providing contact details
  • Offer to post copies of documents/attachments. Ensure these allow space for forms to be filled out by hand if necessary. Allow freepost return if possible
  • When providing paper copies of documents, give people the option of requesting them in large print or other accessible formats, e.g Easy Read
  • If requested, take time to talk people through any online tools over the phone which they may be using for the first time
  • Be prepared to send presentations and materials electronically in advance of meetings to people who have sight or hearing impairment, if requested
  • Be prepared to support participants who are accessing meetings virtually, for example by offering to test any technology being used with them before the meeting
  • PSPs should always be willing to accept responses to anything (including formal consultations) in paper copy or in electronic formats or over the telephone. This will encourage response and ensure the process does not discriminate against people unable to use or unfamiliar with certain formats
  • For meetings where places are allocated on a first-come-first-served basis, keep separate reservation lists for people responding online and by post
  • Patients or patient organisations without financial resources may not be able to take part if they have financial limitations so payment for at least travel expenses, and possibly time (e.g. to go towards covering childcare costs or absence from work) may need to be built into the PSP budget at the planning stages. This may help a more diverse range of people to take part. Guidance from INVOLVE on payment for patient and public involvement, including travel, can be found at invo.org.uk . It is important to make patients aware that receipt of payments from a PSP (excluding refunds of expenses) may affect any benefits they are in receipt of, and they should check how any payments will affect them
  • Meetings and workshops should be organised with appropriate start/finish times to make taking part as practical as possible for participants
  • There may be points that should be checked with participants such as a requirement for hearing loops or level access to meeting rooms, timings of their caring responsibilities, travel difficulties, telephone/virtual involvement in meetings where necessary or shorter meetings where participants with particular conditions would find that more comfortable. Steering Groups should think carefully about all practical requirements or sensitivities that they may need to plan for in order to make sure that patients and carers can contribute fully to meetings.

Facilitators and chairs should ensure patients and carers have equal voices to those of clinicians in meetings and workshops. It is also important to recognise that the views of patients and the views of carers may differ. Neither group should feel that their voice is more or less valid than the other's is. The environment of any PSP meeting should be respectful.

Taking extra time to support patients before, during and after meetings will ensure they are able to contribute equally and comfortably present their views, particularly because they may be talking about very personal issues.

Examples of support include:

  • early provision of information in a suitable format and a pre-meeting telephone call if this would help
  • a space to take time out from the meeting if necessary and another member of the meeting prepared to offer support if needed
  • opportunities to meet the chair and talk through the format of meetings beforehand
  • evaluation forms on which patients and carers can comment on their experience, anonymously if preferred.

Many patient organisations will have a great deal of expertise and good practice experience of involving patients and carers. This should be shared across the PSP.

The Cystic Fibrosis PSP wrote about the efforts they made to ensure people with Cystic Fibrosis were able to fully contribute to the PSP including involvement in the priority setting workshop, despite not being able to meet in person because of the risk of cross infection. You can read about it here https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0159-x

Further reading:
INVOLVE publications around good practice in public involvement.