conf 2002 CHogg.asp

PATIENTS FORUM ANNUAL CONFERENCE 2002 - PRESENTATIONS

How were patients and the public involved in the National Service Frameworks and did it make a difference? - Christine Hogg

The study

The study looked at how P and p have been involved to date in developing National Service frameworks.

National Service Frameworks (NSFs) were launched in 1998 to:

· Set national standards based on the experiences of patients and carers

· Decrease the variations in services

· Establish performance measures

So the importance of getting patient and carer perspectives is critical

So far 4 have been developed and 3 are in process. Wide range – generic and specific

NSFs so far developed

Mental health in September 1999

Coronary heart disease in March 2000,

Older people in March 2001

Diabetes (standards) in December 2001

In progress

Children,

Long-term conditions (focussing on Neurological conditions) and

Kidney patients

Good news – real commitment and some different ideas about getting patient and care perspectives. Not a lot on hard to reach groups but certainly an awareness and beginnings that we can build on.

You can read the report and I would like to just to discuss a few issues:

Involving patients and the public

· External Reference Groups

· Drawing on existing evidence.

· Consultation days and conferences – Chinese. Diabetes

· Surveys and research

· Interactive web sites

· Users and carers reference groups

ERG- All had an ERG that advised Ministers with members representing patient and care interest. Varied – Most in Mental Health and least in CHD.

The main difference was the dilemma of wanting ‘real patients’ as opposed to proxies. Vol sector felt resources and contacts not recognised. Important to remember many ways to get perspective on NSFs not just through membership of ERG,

Lay members on External Reference Groups

· Accessing users’ experiences,

· Assisting the identification of needs of people from hard to reach groups

· Promoting users’ views on the ERG

· Contributing as part of a team to the development of standards

· Encouraging the user commitment to the standards and implementation

Some individuals nominated thought clinicians and some through voluntary sector.

Not easy role as an individual patient and care on an ‘expert committee’

The patient/carer perspective

Contribution:

‘reality

But:

· Selecting individuals

· Legitimacy

· Support or training

· Remuneration

Voluntary sector – proxy as individuals but whether a user or carer not issue. Pros and the criticism where about self promoting but on the whole at the start not afterwards particularly where open – e.g. users reference group included organisations not included.

The voluntary sector: Resource or unsatisfactory proxy?

Contribute

· Contacts from their membership

· Wider clinical and political context

· Putting forward views of hard to reach groups and following up.

· Continuity for implementation

But

· Self promoting

· Less in touch

Older people’s NSF had a reference group, which was very successful – in giving legitimacy and confidence to go round publicising the NSF and encouraging involvement in implementation.

Experiences –

Experiences of ERGs

o Confidentiality

o Resources and priorities

o Testing the standards

o Implementation

Fighting for better standards is what the voluntary sector is all about, in some NSFs a compromise between the possible and what would like. ERGs expected to advise on implementation as well. For example over 30 standards reduced to X in the final Mental Health NSF. What happened to the rest? Useful but could be lost. Lot of disillusionment as the final result different from the ERG report.

Scottish 20 and gave priorities so that the Treasury can draw the line. But the wider vision is not lost.

This is very important and it would be good if the consultation in developing standards was linked more closely to implementation. This is important for users but also front line staff – who need to make things work and need to be brought along as the standards develop and they can see the benefits of new ways of working. Need to look at

Did users make a difference?

Did user involvement make a difference?

1. Opportunity to influence standards

· Mental health- carers standard

· Older people – ageism and quality of life

· Diabetes patient empowerment and early identification of Type 2

2. Greater knowledge and understanding of the NHS

3. Enabled organisations to become involved in implementation more easily

Recommendations to sum up

Participation and communication strategy at the start

Scotland – public meetings and leaflets as well as website.

To sum up