Involving Patients & Carers

Learning Outcomes Ability to reflect on the experience of a service user. Ability to work with patients and carers in a productive way. Understanding of different approaches and strategies towards public and patient involvement in services.

Patient and Public Involvement - Definitions Patients and Public: Patients, carers, users, clients & patient representatives, as well as the local community and wider public as potential patients and taxpayers. Involvement: Refers to the appropriate, active participation of all these groups, as partners in their own care and in the planning, monitoring and development of health services.

Level of Involvement “Minimum” participation e.g. users are given information (leaflets, displays). “Moderate” participation e.g. users are given information and consulted (open days, questionnaires) “Maximum” participation e.g. users are given information, may also be consulted and are involved as partners in service planning, development and evaluation

Why consult and involve patients – Strategic Framework Because national policy and strategy drives us: It is a statutory duty for all NHS Trusts and SHAs to involve and consult patients and the public in the development of proposals for change. It is a core standard in the Healthcare Commission’s Better Standards for Better Health which all Trusts are performance managed against.

The Kennedy Report The Kennedy report on the Bristol Royal Infirmary Inquiry published in July 2001 recommended that “the perspectives of patients and the public must be heard and taken into account”.

Why consult and involve patients – operational aspects The benefits we achieve: –better understand and meet the needs of local people –improve and develop services which are appropriate and accessible –acknowledge that patients and carers have expertise in their experience of care

Student Exercise What methods can you identify for involving patients?

Local Authority Overview & Scrutiny Committee The NHS structure for PPI Patients & Public PALS Patients’ Forums Commission for Patient and Public Involvement in Health

Facilitates the concerns of patients, carers and their families, negotiates on the spot resolution, refers patients to external advocacy. Provide information on Trust services including on how to make a complaint. Act as a gateway for patients, carers & families who want to be involved in shaping the NHS. What does PALS do?

The five dimensions of the patient experience Access & waiting Safe, high quality, coordinated care Better information, more choice Building closer relationships Clean, comfortable, friendly environment

A patient’s possible journey through care Feeling something is wrong/routine screening Referral Accessing the service Assessment & diagnosis Initial treatment/management Continuing treatment/rehab/long term management/palliative care Discharge/follow up Staying well/maintaining quality of life

Questions to ask before planning patient/ carer involvement What are we trying to accomplish? How will we know that a change is an improvement? What do I want to know? –General or detailed information? –About planning or developing services? –About existing services? Who will I ask? What resources do I have? How will I get informed consent?

Involving patients – Outcomes Collating, analysing and reporting the results Making changes - action plans – PDSA Evaluation Feedback to patients and the public Plan Study Act Do

and finally…………….. Your challenge is to establish continuous improvement as part of everyday practice in such ways that patient involvement is seen as a key component.