Greater patient involvement in personal healthcare needs and also in the development of local and national healthcare provision is an important part of the future development of effective healthcare services. There is, however, a fear that the advances gained in recent years may be threatened by the financial stringencies facing all areas of the health community.

Local involvement networks (LINks) were set up in 2007-2008 (replacing the Patient and Public Involvement Forums established in 2003) with a view to improving the quality of NHS services by presenting to PCTs and trusts the views and experiences of patients, carers and families. ¹ Funding of £84 million was made available to local authorities to support LINks' activities between 2008-2011. LINks were given legislative powers to do spot checks on publicly-funded healthcare facilities, to ask questions of healthcare managers and feed any concerns to Local Authority Scrutiny Committees.²

The current Secretary of State for Health, Andrew Lansley, announced in July 2010 that an initiative called HealthWatch would be established which would incorporate and develop existing LINks' activities.³ The finer details of the HealthWatch scheme have yet to be developed but it is clear that the Coalition Government's decentralisation will see a devolvement of power to local organisations and increasing involvement of the public in local decisions. It is intended that HealthWatch will become a national independent consumer champion and that LINks will become 'Local HealthWatch' organisations. GP commissioners will be charged with the obligation to involve the public in its decisions.

Patient Advice and Liaison Services (PALS) - first announced in the 2002 NHS Plan - have provided support to patients, families and carers.⁴ The Coalition Government intend PALS to continue in hospital trusts; however, PALS in PCTs will disappear when those organisations are abolished.⁵ The Expert Patient Programme (EPP) was established in 2002 to enable patients with chronic conditions to become more involved in their own care.⁶ Their future in the 'Liberating the NHS' environment is currently unknown but the EPP is in discussion with the Government about their role.⁷

Patient participation should be seen as a very positive process but requires enthusiasm and commitment in order to achieve all the potential benefits.

Patient involvement contributes towards quality payments under the GMS2 contract but practices are no longer paid to conduct surveys. Instead, a national questionnaire is sent out.

The appropriate Quality and Outcome indicators are as follows:

• Patient experience of access (1) - PE7: the percentage of patients who, in the appropriate national survey, indicate that they were able to obtain a consultation with a GP (in England) or appropriate healthcare professional (in Scotland, Wales and Northern Ireland) within two working days (in Wales this will be within 24 hours). 23.5 points available - payment stages 70-90%.
• Patient experience of access (2) - PE8: the percentage of patients who, in the appropriate national survey, indicate that they were able to book an appointment with a GP more than 2 days ahead. 35 points available - payment stages 60-90%.

See separate article Patient Satisfaction - Assessing and Achieving for more details.

Patient participation groups

Many practices have established patient participation groups. Establishing such a group helps:

• To develop a partnership with patients.
• To discover what a range of patients think about services and to establish their priorities.
• To provide a platform to test and modify ideas and plans.

There are inevitably potential problems:

• Members of the group may have unrealistic expectations.
• They may feel uncomfortable about sharing their views or have an exaggerated focus on one particular issue.
• Care must be taken to avoid the group being unrepresentative of practice patients or becoming a complaints forum rather than a forum for expressing and sharing constructive ideas.
• The potential benefits of a patient group are substantial but the group is likely to be time-consuming, so setting and running the group must be supported by everyone, making this time well spent.

Some of the key aspects of establishing a successful patient group are:

• Involving everyone in the primary care team.
• Developing a clear plan for setting up and developing the group and also establishing clear goals for the group.
• Good recruitment, which is essential. The right choice of facilitator and the right mix of members in the group are the most important factors in the success of the group.
• That the ideas and views of patients must be treated with merit.⁸ Otherwise, it will be very clear that the group is just a token gesture.
• That it is up to the group meetings to modify any ideas in terms of practicality and potential benefit.
• The importance of publicising the group, the issues discussed and the plans that have been decided.

The National Association for Patient Participation (NAPP)⁹ provides support for the development of patient participation groups and maintains the affiliation network.

Document references

1. Patient and public involvement forums, Dept of Health, March 2008
2. Local involvement networks (LINks), Dept of Health, 2010
3. Lansley A, Equity and excellence: Liberating the NHS, Dept of Health Speech, July 2010
4. Patient Advice and Liaison Services, Dept of Health
5. HealthWatch focus at National PALS AGM, Patient Advice and Liaison Service (PALS) News, December 2010
6. Expert Patients Programme
7. EPP CIC consultation response to the government's White Paper “Liberating the NHS”, October 2010
8. Williamson C; The rise of doctor-patient working groups.; BMJ. 1998 Nov 14;317(7169):1374-7.
9. National Association for Patient Participation (NAPP)

Internet and further reading

• More to Offer, The National Association for Patient Participation (NAPP), October 2008

Acknowledgements