This blog was co-written by myself Lucy Simons (@vanhappier) and Paul Radin (@paul_radin). Paul works to improve mental health services and brings insight from implementing NICE guidance within an NHS mental health trust.

All guidance from the National Institute of Health and Care Excellence (NICE) has some relevance for service user experience, but there are two specific publications that focus on this in depth – Service User Experience in Adult Mental Health (2011: CG 136) and Patient Experience in Adult NHS services (2012: CG 138) with their associated quality standards and pathway summaries.

This guidance intends to promote person-centred care that takes into account service users’ needs, preferences and strengths while supporting them to make informed treatment decisions in partnership with those involved with their care.

Earlier this year, NICE published an Evidence Update relating to this guidance to improve service user experience (CG 136). Updates aim to increase awareness of relevant new evidence and also indicate how it may impact upon the original guidance; they really need to be read as part of the suite of NICE publications relating to patient experience. The hope is that this update will reduce the need for practitioners and commissioners to search for new evidence – something we can obviously help with here in the woodland!

As you would expect from NICE, high quality evidence has been used to create the guidance. From a service user perspective, the result is good. It is obvious that the Clinical Guidance Development Group put a lot of work into this suite of guidance. But it seems, from our experience, it isn’t actually used much in practice. So in this blog, as well as summarising the Evidence Update, we are interested in thinking about how dissemination and use could be improved.

Methods

For this Evidence Update, a search for new evidence published from 1 April 2011 to 5 November 2013 was conducted and after applying automated and manual sifts, NICE produced a list of 37 relevant references which were rapidly appraised and reviewed by an Evidence Update Advisory Group (a sub-panel of the Guidance Development Group). The outcome of this review was a selection of eight items for the Update.

Review of the evidence

There are eight key areas in the original guidance, with this Update including evidence relating to four of these.

Relationships and communication

NICE CG136 sets out a number of recommendations around the importance of relationships and communication between healthcare professionals and people using mental health services and their families or carers. These include:

Working in partnership

Offering treatment and care with optimism and hope

Taking time to build trusting, supportive, empathetic and non-judgemental relationships

Further support for these recommendations are offered by two studies:

A systematic review and meta-analysis by Henry et al (2012) demonstrated the importance of health professional non-verbal communication skills – particularly listening, warmth and avoiding negativity – in achieving service user satisfaction Edge’s (2011) qualitative focus group study found that perceptions of healthcare professionals’ lack of compassion or lack of time to deal with postnatal psychological problems may be barriers to seeking help in black Caribbean women.

Experiences of compulsory inpatient treatment

NICE CG 136 further recommends that healthcare professionals should aim to:

Foster their autonomy

Promote active participation in treatment decisions

Support self-management

Maintain continuity of individual therapeutic relationships

Further support for the guidelines is offered by:

Laugharne et al (2012) who found in their qualitative study that trust was enhanced when clinicians had caring or kind attitudes, reliably delivered on their promises, listened to the service user, were honest about the future and related to the service user by disclosing small details of personal information. Choice in their care was enhanced by service users’ knowledge of their illness, time spent with staff, and having a treatments other than medications available Gault et al (2013) who found in their qualitative study with service users with experience of compulsory admissions because of non-adherence to treatment, that having a collaborative relationship with healthcare professionals may lead to improved attitudes towards future adherence to treatment

Engaging service users in improving care

NICE CG136 recommends that services should:

Routinely commission reports on the experience of services

Including data collected by service users monitoring service user experience and complaints

VOICE (Views on Inpatient Care) is a self-report tool developed in collaboration with service users which is suitable option for services to use when evaluating service user experience of care:

A study by Evans et al (2012) suggest the tool may be easy for service users to complete and understand, has good validity and internal and test-retest reliability

Collaborative care

NICE 136 recommends:

Close working relationships between mental health services and primary care

In their systematic review and meta-analysis, Thorta and colleagues (2012) found that collaborative care (involving at least a case manager, GP and mental health specialist) was associated with improved symptoms and other outcomes such as adherence, response, remission, recovery and satisfaction with care. This was especially so if the the case manager was a nurse or based in the community.

Assessment of quality of life

NICE 136 recommends:

Enough time is allowed in assessments to focus on issues that matter to the service user, for example their problems, questions, opinion of treatment options, and the impact of the assessment itself

An open-label trial in France (Boyer et al., 2013) found that adding a quality of life assessment to standard psychiatric assessment may increase services user’s global satisfaction if treating clinicians are provided with the results and a comparison of the score against population norms. However, assessing quality of life without considering the results clinically against population norms could result in potential harm to the patient.

Preference for psychological treatment

NICE CG 136 recommends that:

Service users should have timely access to psychological, psychosocial and pharmacological interventions

In a meta-analysis of 34 studies, McHugh et al (2013) found that people seem to prefer psychological treatments to drug treatments for mental health problems, irrespective of whether or not they have experience of mental health problems.

New evidence uncertainty

The update identified one new evidence uncertainty for the UK Database of Uncertainties about the Effects of Treatments (UK DUETs):

Discussion

What’s interesting about the research in this Evidence Update is that it mostly relates to health professional behaviour, i.e. ways in which doctors and nurses communicate, build relationships with service users, use a range of information in clinical care and work to build user’s knowledge and capacity for collaborative care.

Therefore, to audit and then improve service user experience, we suggest an involvement approach is required, rather than a clinical audit approach. If you want to find out if service users have a good experience of services, you need to ask them, rather than the clinicians. They are, after all, the folks on the receiving end of this behaviour. This seems obvious to us really.

Most other NICE guidance, for example relating to treatment decisions, needs to be implemented through a process of clinical audit, but almost without exception, all around the country, the focus of patient experience work is feedback. There is a need to collect feedback based on NICE Guidance, which NICE recommends already, but Trusts may be reluctant to add to their feedback systems due to worries about cost, feedback fatigue, and simply not knowing how.

Here’s a suggestion, building on the work by Evans and colleagues (Evans et al, 2012) – trained and supported service user volunteers can carry out interviews with other service users using the NICE Guidance and quality standards as the basis for these feedback conversations. From our own experience, we know that both interviewers and interviewees enjoy these conversations. Bringing NICE guidelines together with Patient Feedback effectively means staff, service users and volunteers working in partnership to improve patient experience.

Let’s try not to miss a golden opportunity to make some really significant progress in patient experience work, using genuinely collaborative methods.

Summary

The key points from the Evidence Update do not have a potential impact on the NICE CG136, in that they do not suggest a need to alter or amend the guidance. However, the new evidence does add further support to why this guidance is important.

In our experience, there is considerable support for the aspirations contained with the guidance and service users want to see them realised. However, if we all want to promote better implementation of this guidance, it’s vital that we find a way to empower service users to be the ‘squeaky wheel’ that services just cannot ignore.

Links

Service user experience in adult mental health: Evidence update 61 (PDF). NICE, 2014.

Service user experience in adult mental health: improving the experience of care for people using adult NHS mental health services (PDF). NICE, 2011.

Patient experience in adult NHS services: improving the experience of care for people using adult NHS services (PDF). NICE, 2012.

DUETS (2014) Psychological treatment versus pharmacotherapy: patient preference in the full range of psychiatric illnesses

Evans J, Rose D, Flach C et al (2012) VOICE: developing a new measure of service users’ perceptions of inpatient care, using a participatory methodology Journal of Mental Health 21: 57-71 [PubMed abstract]