West Suffolk Hospitals NHS Trust Briefing Paper

Patient & Public Partnership – Building a Collaborative Strategy

With many thanks to the National Assembly of Wales, NHS Cymru and the Office for Public Management for their publication “Signposts – A Practical Guide to Public & Patient Involvement in Wales”^`1 around which much of this Strategy is based. (see: www.wales.nhs.uk/publications/signposts-e.pdf)

Any questions concerning the PPI Strategy should be directed to the Director of Nursing ()

Contents

Trust Strategy

Rationale for the Strategy

Trust Framework

Current Trust Position

Areas for Action

Appendix A: Patient & Public Participation: Reporting Structures

Appendix B: Patient & Public Participation: Baseline assessment (support/user groups)

Trust Strategy

Our vision is to provide patient centred and evidence based healthcare to the people of West Suffolk, South Norfolk and the surrounding areas by:

·         Transforming services to become patient centred;

·         Empowering patients to participate in their own treatment and care;

·         Providing information and opportunity to empower patients to have more say in their treatment and influence over their care;

·         Introducing a responsive model of Patient Advice & Liaison Service;

·         Developing partnerships with the public, patients and all other health and social care agencies to enhance the provision of highest quality patient care;

·         Listening to views and consult with consumers/stakeholders;

·         Working with partners to develop a locality focus for health and social services in West Suffolk, including the development of a locality Health Improvement Programme.

Rationale for the Strategy

The Government is committed to building a health service, which is responsive and sensitive to the needs of patients and the wider public. The White Paper “Patient and Public Involvement in the new NHS” (PPI) was launched in September 1999 to stimulate further action within health organisations to involve patients, users, carers and the public in health and health services, highlighting the opportunities which the Government’s NHS reforms offer to develop effective patient and public partnership.

To achieve the above, the Government is introducing new arrangements for public and patient involvement which will enable the NHS to deliver against the key objectives which are to:

·         provide better information,

·         listen to patients,

·         provide advocacy and support,

·         act on complaints,

·         make the NHS accountable,

·         change the culture to achieve all of the above.

Trust Framework

The Trust has introduced a framework that, when implemented will enable a multiplicity of patient & public participation activities to evolve throughout the Trust. These in turn will ensure the aims of the strategy are met, reflecting the adopted ethos of patient and public partnership.

In order to further undertake work on patient & public partnership (PPP), it is important that the Trust has a common understanding of what the term means, so that a consistent approach can be taken.

PPP needs to be carried out across two levels:

·         The individual – the involvement of patients in discussions and decisions concerning their own individual care and treatment.  It is closely linked to the overall care experience for individual patients.

·         The collective – the involvement of patients and the wider public in decisions concerning the delivery and planning of services.

At both the individual and collective levels, there may be different degrees of involvement that reflect a spectrum of engagement that ranges from provision of information to patients and/or the public, through to feedback from patients and/or the public to patient and/or public influence over decision making.  Figure 1 below brings these different dimensions together in the form of a grid.

Figure 1.  Main dimensions of patient and public participation

Figure 2. Main dimensions of patient and public participation– linking initiatives to key dimensions

Effective information provision to patients and to the wider public should lead to:

·         better informed access to, and utilisation of, care,

·         clarity of understanding and rights and responsibilities,

·         transparency of service provision, and better understanding and confidence in the NHS.

Effective feedback from patient and the wider public should lead to:

·         services that are focused on  needs,

·         enhanced responsiveness of services,

·         higher standards of service quality,

·         greater consistency of service delivery,

·         the efficient use of resources in delivering services,

·         a developing capacity for service improvement and development.

Effective influence from patients and the wider public should lead to:

·         patient-centred care,

·         involvement in care and treatment decisions and informed choice,

·         better accountability to patients and the public and enhanced clinical governance arrangements,

·         inter-grated organisational systems and structures that are linked to improvements in outcomes and the patient’s experience of care.

·         Feedback and influence shares some common purposes and are not neutrally exclusive arenas.  The key difference is that feedback concentrates on obtaining public and patient perspectives on the quality of service outcomes, i.e. how good is the service that patients receive?   Feedback is usually limited to obtaining information and views without any organisational obligation to take these on board during the decision–making process.  Influence extends to bringing public and patient perspectives into the decision-making process itself in order to improve openness and accountability.  It is when individuals or groups have a more active part to play in contributing to decision making or making the decisions themselves.  Another way of putting it is that these initiatives should improve both performance and governance.

Figure 3. Main dimensions of public and patient participation– Achieving the desired outcomes

Current Trust Position

The framework has been applied as a diagnostic tool to identify the different dimensions of patient and public participation currently existing within the Trust. The results of the mapping process across the organisation as a whole and within individual service areas are indicated in figure 4. 

The mapping process highlighted areas of existing patient and public involvement, but also identified areas needing further development. It should be noted that in order to implement new activity as outlined in the following section, the Trust will need to develop the capacity to undertake the work and be prepared to change working practices and cultures.

A Steering Group has been convened to support and monitor the implementation of the action plan, which will ensure the aims of the strategy are achieved and the benefits of patient and public participation are realised.

A diagram outlining the existing reporting channels for patient and public involvement is shown in appendix B.

Areas for Action

The Steering Group has identified four areas which require further development:

1. Structure, organisation and resourcing

Key points:

·         Patient & Public Participation within the Trust to be centrally co-ordinated by the Steering Group;

·         The framework needs to be disseminated and implemented within each Directorate so that each Directorate will develop a plan for patient involvement with a variety of specialty specific initiatives e.g. emerging “learning from the patient experience” groups or focus groups;

·         Develop Trust Health Panel (database of patient and public participants, see appendix B);

·         The Trust, in collaboration with the West Suffolk PCT, to develop plans for communication and consultation with local people. This will involve users in development, planning and commissioning of services;

·         Resourcing lay involvement e.g. travel and subsistence, childminding fees, access to clerical office support;

·         Appropriate training opportunities for volunteers;

·         Steering Group to develop an introduction pack for patients and public participating in Trust activities.

2. Supporting staff to achieve patient & public partnership

Key points:

·         Trust to encourage staff participation in support, user and focus group activities;

·         To promote lay involvement in clinical groups e.g. setting priorities for clinical audit, and the development of clinical guidelines and patient information;

·         Include principles of patient partnership in clinical and non-clinical training programmes;

·         Promote a culture of patient partnership through lay representation and regular contact with patient representative organisations;

3. Production and dissemination of information for users

Key points:

·         Greater use of consumer views and feedback to establish what information people want;

·         Establish a central resource to facilitate production and monitoring of patient information by:

-          linking patient groups and those producing effectiveness and outcome information;

-          Providing consistent and high print quality for patient information resources;

·         Develop a patient and public involvement section on the Trust web site (internet);

·         Maintaining and enhancing contact with organisations providing quality patient information e.g. Royal Colleges, National Electronic Library for Health (NeLH);

4. Research and evaluation of effective mechanisms

Key points:

·         Research and evaluate methods of involving consumers in service provision by other organisations;

·         Monitor effectiveness of user representation within the Trust.

Figure 4: Baseline Assessment of current PPI Activity

Appendix A: Patient & Public Participation: Reporting Structures

Click here to view flow chart in separate window.

Appendix B: Patient & Public Participation: Baseline assessment (support/user groups)

Introduction

In order to develop an effective Public & Patient Participation action plan, mapping the current structure and developments within the Trust was essential. This paper presents the current position of user and support groups.

Summary

Many services refer patients to local branches of national organisation rather than run user or support groups in-house. More support groups were reported than expected (sixteen in total), however Cancer Services and the Maternity Services Liaison Group are the only areas to have user forums and groups to scrutinise patient information.

Areas with no user or support groups: Pharmacy, A&E, Anaesthetics, Chiropody, ENT, GUM, JC Day Hospital, Neurology, Nutrition & Dietetics, OT, Physiotherapy, Oral & Maxillofacial, Orthodontics, Plastic Surgery, Urology, General Medicine, General Surgery.

Areas which were contacted but unable to respond in time for this paper: Audiology, Colposcopy, Pathology, Orthopaedics, Radiology.

List of Groups

Cancer Services

West Anglia Cancer Network's Patient / User Forum

Forum where patients / carers can suggest changes would wish to see made in the future, suggest improvements to current services, involvement in planning of future services.

Breast Care Unit

West Suffolk & Thetford Cancer Support Group

Meet Tuesdays at WSH, Fridays at Thetford, 2nd and 4th Wednesday at Sudbury.

Newmarket Breast Care Support Group

Meet 2nd and 4th Thursday at Newmarket.

The Young Ones

Meet last Wednesday in the month at WSH, specifically for under 50's breast patients.

Note: All breast care groups are informal, have speakers, aromotherapists monthly, patients/friends/families attend, majority are breast patients.

Coronary Care Unit / Cardiology

Rehabilitation support for MI Patients

Meets weekly, patients are supported through talks, guidance on medication, exercise programs.

Diabetes

Friendship / Support Group

For children with diabetes and their families. Meet monthly for support and chat, demonstrations of equipment and occasional talks by dietician.

Note: Diabetes Nurses are largely employed by the LHP - so other Diabetes Support Groups are run by LHP.

ITU

Follow Up Clinic

Support offered to patients (and families) who have spent more than 4 days in ITU. Patients visited if consequently moved to HDU or wards weekly. Discharged patients contacted at 2, 6 and 12 months. Patients are supported through any problems, information exchanged, patients and staff  keep diaries of their time in ITU so they know what has happened to them, counselling for relatives.

Maternity & Gynaecology

MLSC (Midwifery Services Liaison Committee)

All Hospitals have these groups if they give maternity care. Members include GP, Consultant Obstetrician, Lay members, Head of Midwifery, usually an Operational Manager or similar, Health Visitor, Breastfeeding Midwife representative and usually one or 2 midwives.

Teenage Pregnancy Information Days

Provides a forum for feedback from mothers on how services can be improved.

Note: See also SCBU. Maternity & Gynaecology also have regular meetings with lay groups - National Childcare Trust, Breastfeeding Network, La Leche league etc.

Ophthalmology

West Suffolk Voluntary Service for the Blind

Available every day, they attend clinics and support patients newly registered blind or partially sighted, provide emotional and logistical support, how to cope etc.

Paediatrics

Diabetic Friendship Support Group

Meets monthly, run by diabetic nurses.

Nicky's Way

Meetings at the hospice, for children who are bereaved.

Respiratory Medicine

Breathe Easy

Support group meets 3rd Thursday of every month, for patients with serious respiratory illness (e.g. COPD), currently undergoing restructuring, meetings are outside hospital but are run by a staff member.

A bid is being developed for the pilot of correspondence to GP’s being sent to respiratory patients.

SCBU

Parent Support Group

Meet monthly, began October 2001 with 10 families. BLISS charity provided funding grant, launch expected early 2002. Involves group discussion on bereavement, future pregnancies, experiences on the Unit, fund-raising. Hope to arrange a coffee morning in the near future.

Adult Medicine

Patient Carer Group

For inpatients and carers, meets weekly on Monday afternoons. Mainly educational on a rolling program to accommodate new inpatients. Includes speakers from DRC etc., relevant and useful information, how to cope etc.

Stroke Carer Support Group

Meets once a month on Tuesdays, forum for carers to express fears, worries and concerns, provides information on support networks and local groups.

Rheumatology

Rheumatology patients of three years plus receive copies of medical correspondence.

Rheumatology patients are involved in the development of information documents for ARC and Arthritis Care.  Panels of experts, patients and carers develop these leaflets.  There are local links with “Arthritis Care” and the “National Osteoperosis Society”, the rheumatology Consultant is involved in the set up of local groups.