FAQs for people wanting to get involved

Personal and Public Involvement is a term used to describe the active and meaningful involvement of service users, carers and the public in the commissioning, design, delivery and evaluation of Health and Social Care services, in ways that are relevant to them.

‘Personal involvement’ refers to the active and meaningful involvement of service users, patients, carers, consumers, customers, relations, advocates or any other people who use Health and Social Care services as an individual or part of a family.

‘Public involvement’ refers to the active and meaningful involvement of the general population and includes community and voluntary groups and other collective organisations. Individuals who use HSC services are also members of the general public.

There are a range of resources to support service users and carers to get involved. This includes:
– E-learning to help understand what is PPI, how you can get involved and the difference it will make to Health and Social Care.  Complete the e-learning here.
– What to consider when getting involved. Check out the resources available.

The jargon buster or abbreviations list contains the definitions of some of the terms commonly used in Health and Social Care. It is not a complete list of all the words you might come across. Find the jargon buster and abbreviations list by clicking here.

If you would like to be kept regularly updated about the opportunities to get involved in Health and Social Care, check out and sign up to the Patient and Client Council’s Membership Scheme at: http://www.patientclientcouncil.hscni.net/membership-scheme.

Also check out the different ways to get involved here.

If you are involved as a service user or carer in Health and Social Care, for example as a member of a Reference Group or as a lay representative involved in research, the e-learning programme for service users and carers which will introduce you to some of the skills and knowledge you may need to successfully represent yourself and others. Click here for further information on training available.

Yes, for effective involvement to take place people need to feel supported and that their contribution is valued.

Service users, carers and stakeholders who have agreed to become involved and participate in service development and improvement activity, such as meetings, discussion forums, focus groups, training events, interview panels or a defined task or work programme, can be reimbursed for out-of-pocket expenses. This will include travel costs and carers. Download the HSC guidance on reimbursement of out of pocket expenses for further information.

Check out the PPI Case studies section to read about how involvement has made a difference to Health and Social Care. Research has also been undertaken in Northern Ireland which looked at the impact of Personal and Public Involvement. Find out more about the research here.

Patient and client experience (PCE) is about people’s perception of the quality of the care they received. It relates directly to the experience the patient receives when they are interacting with the HSC system and focuses on:

• respect;
• attitude;
• behaviours;
• communication;
• privacy and dignity.

Personal and Public Involvement includes concepts and practices such as health literacy, shared decision making, and supported self-management. Meaningful involvement not only helps inform the direction and priorities of health and social care, whether that is at an individual level or collective level, it also sustains people’s participation in and ownership of their own health and social wellbeing.

While the two concepts are linked, sharing a similar value base, they are distinct. A patient can conceivably have an experience that meets the standards above and have minimal levels of involvement. Likewise, it is possible for one to be meaningfully involved, but for their experience of health and social care to have fallen short of the five PCE standards. The goal is to ensure that people have a good experience and also that they are meaningfully involved.

In Northern Ireland it is a legal duty to involve and consult service users, carers and the public in relation to:

1. the planning and provision of care;
2. the development and consideration of proposals for change in the way that care is provided;
3. decisions that affect the provision of care.

Check out the legislation and other government policy here.