Important changes to the arrangements for patient and public involvement in the provision of health services under the NHS came into force on 3 November 2008.

These changes are a result of the Local Government and Public Involvement in Health Act 2007, on which we reported last year.

The provisions that came into force on 3 November amend the legal duty imposed on NHS bodies under section 242 of the National Health Service Act 2006 (the Act) to 'involve and consult' local communities on the planning and development of services.

(NHS bodies for these purposes are Strategic Health Authorities, Primary Care Trusts, NHS Trusts and NHS Foundation Trusts.)

Perhaps most importantly, a distinction is drawn between consultation and involvement; service users must be 'involved (whether by being consulted or provided with information, or in other ways)' (section 242(1B) of the Act).

New Statutory Guidance

The Department of Health has now issued statutory guidance (the Guidance) on this duty of involvement. The guidance seeks to help NHS bodies to identify those whom they need to involve and to deliver better involvement practice.

NHS bodies are under a duty to have regard to the Guidance (section 242(1G) of the Act). As the Guidance itself says, this does not mean that it has to be followed in all cases, but it must be taken into account, and an NHS body should have reasons for departing from it.

The Content of the Guidance

The Guidance is lengthy (over 100 pages) and deals with a wide range of cases, both as to those who should be involved - patients, staff, local involvement networks (LINks) and so on – and the different circumstances in which involvement might take place (for instance by way of contracting and practice based commissioning).

The Guidance requires that NHS involvement should be: clear, accessible and transparent; open; inclusive; responsive; sustainable; proactive; and focused on improvement.

Involvement is presented as a continuum with different levels, ranging from the simple and informal provision of information through to documented consultation processes. It should be constant throughout a project, with NHS bodies engaging in involvement at different levels as circumstances require. NHS bodies should view involvement as an embedded part of their core values, not a separate exercise to be undertaken at defined points in a project.

Various involvement techniques are suggested, including focus groups, story telling, shadowing, blogs, interviews, leaflets and formal consultation. However, the Guidance does not prescribe set types of involvement for particular circumstances.

NHS bodies are expected themselves to assess what types of involvement are most suited to their own communities. NHS bodies are encouraged to be creative in their thinking about involvement techniques, perhaps even designing hybrids and innovative techniques to involve local communities in the most effective manner.

Involvement will only be effective if an NHS body has correctly identified those who should be 'involved'. It follows that in many cases NHS bodies will need to undertake a health impact assessment and stakeholder analysis so as to be clear who to involve.

The Act refers to the involvement of 'users' (defined by section 242(1F) as people who are using the services or who may use them). The guidance suggests that within the broad definition of 'user' those involved might be: members of the public; patients; carers; members of self-help and support groups; members of user groups, and the LINk.

Any of these people may also act as the representatives of others.

In planning and structuring involvement NHS bodies should in particular take care not to exclude 'hard to reach' and 'seldom heard' groups including -

  • people who do not frequently engage in public consultations,
  • minority groups, such as non-English speaking people, people from black and minority ethnic communities, gay men and lesbians and homeless people,
  • young people, older people and people living in rural communities,
  • hidden communities such as drug users, sexually active teenagers and sex workers,
  • vulnerable groups that may require different ways of communicating, such as people with learning difficulties, those with a visual impairment and people with a mental illness,
  • faith groups, and
  • people who are just uninterested and/or disillusioned.

Other Non-Statutory Guidance

The Guidance document contains some other guidance which is non-statutory, i.e. it is issued by the Department of Health to assist NHS bodies, but has no formal status under the Act and is not subject to a legal duty to 'have regard to' its content.

Among other things, this includes some helpful guidance as to the obligations of certain bodies to report on their consultations.

Accessing the Guidance and Next Steps

The Guidance and supporting documentation can be found of the Department of Health's website.

Letters have also been sent from the Department of Health to all NHS chief executives, drawing their attention to the importance of the new provisions.