1. Improving service user experience in adult mental health – NICE guidance and National Quality Standard Patient Experience Annual Conference, 9 November 2011 The King’s Fund
Professor Tim Kendall
Director of National Collaborating Centre for Mental Health, Royal College of Psychiatrists and Visiting Professor UCL
Medical Director and Consultant Psychiatrist for homeless people, Sheffield Health and Social Care Trust

2. NCCMH
Evidence-based mental health clinical practice guidelines factory for the NHS (funded by NICE)
Our guidelines are about the overall treatment of schizophrenia, depression, bipolar disorder, drug misuse etc (takes 2 years each)
Review ALL treatments (drug, psychological, social, service level), including service user/patient experience of care

3. 10 years of NICE guidelines in mental health in UK
Schizophrenia* December 2002
Eating disorders January 2004
Self-harm* July 2004
Depression* December 2004
Post-traumatic stress disorder July 2005
Depression in children* September 2005
Obsessive-compulsive disorder* October 2005
Bipolar disorder July 2006
Dementia* November 2006
Ante and postnatal mental health February 2007
Drug misuse – psychosocial July 2007
Drug misuse – detoxification July 2007 3

4. 10 years of NICE guidelines in mental health in UK
ADHD* September 2008
Antisocial personality disorder January 2009
Borderline personality disorder* January 2009
Schizophrenia (update)* March 2009
Depression (update) October 2010
Depression (chronic health problems) October 2010
Generalised anxiety disorder* February 2011
Alcohol dependency March 2011
Psychosis and substance misuse* March 2011
Referral /ident.n common MH disorders April 2011
Self harm – Longer term management November 2011
Overseas guidelines/national quality standards
Caesarean section – no clinical indication* October 2010
Management of acute stroke* February 2011 4

5. Guidelines underway
Improving the experience of care in adult mental health*
Autistic spectrum conditions in adults (with Holland)
Schizophrenia in children and young people (under 18 years)*
Conduct disorder in children and young people
Autistic spectrum disorder in children (treatment and management) (with SCIE)*
Mental health impact of abortion (for Academy of Medical Royal Colleges)*
Schizophrenia in adults (update and QS)

6. NICE and service user experience
NICE and clinical and cost effectiveness?
Incorporating service users/carers in the first NICE guideline
atmosphere and focus of GDG
language
“People with schizophrenia should be cared for in an atmosphere of optimism and hope”
Mental health: chapter on service user and carer experience - in all guidelines

7. Finding out about the experience of service users – NICE mental health guidelines
The service user/carer chapter
Testimonies/stories from service users and carers
Qualitative studies and reviews
Service user literature review
NHS staff attitudes
Focus groups and interviews
National surveys (eg CQC)

8. Self-harm in the emergency department
Both service users (but not carer) left the guideline!
Focus groups (self-harm network)
Service user literature (internet and service user organisations)
Systematic review of health care staff attitudes to self harm (emergency room, GP, psychiatric units)
“Don’t sew up service users without an anaesthetic!”

9. Example: ADHD and ritalin
SU (ADHD as a child) and two carers on guideline
Reviews of literature on parents and teachers views/experience of Ritalin – nothing on children
New interviews with children taking Ritalin undertaken by LSE
Children take Ritalin in the way they want to – mainly to help keep friendships and stave off school boredom

10. Depression in adults
Thematic qualitative analysis of
Experience of depression
Accessing help
Stigma of depression
Experience of psychological treatments
Experience of drugs
Experience of ECT
Experience of health care professionals
Experience of services, families and coping

11. NICE Quality Standards for Patient Experience
Quality standards on patient experience:
Patient experience in generic terms
Service user experience in adult mental health
Project started: November 2010
Anticipated publications: November or December, 2011
Patient and professional chairs; GDG members mainly SUs and carers

12. What is a quality standard?
A set of specific, concise statements that:
act as markers of high-quality, cost-effective care across a pathway or clinical area;
are derived from the best available evidence such as NICE guidance or other NHS Evidence accredited sources; and
are produced collaboratively with the NHS & social care, along with their partners & service users
Outlines the level of service that people using NHS MH services should expect to receive. It covers improving the experience of care for people using adult NHS MH services

13. Methods for developing the guidance and quality standards (1)
Design a framework for the experience of care – based on a matrix created using:
Dimensions of person-centred health care (Picker Institute Europe)
Key points on the pathway of care
High quality care for service user experience – GDG developed qualitative statements that describe key requirements for the provision of high quality service user experience, and the desirable or expected outcomes

14. Methods for developing the guidance and quality standards (2)
Identify key problems – Review key problems in current service user experience by triangulation of:
Existing qualitative reviews (themes extracted from existing NICE MH guidelines)
Existing + new qualitative analyses (eg, Healthtalkonline – Experiences of schizophrenia/psychosis)
Surveys (e.g., CQC Community mental health survey , 2010)
Identify interventions to improve the experience of care – Review interventions for improving service user experience.

15. A framework for person-centred healthcare
Involvement in decisions & respect for preferences
Clear, comprehensible information & support for self-care
Emotional support, empathy & respect
The relationship between individual service users and professionals
Fast access to reliable health advice
The way that services and systems work
Effective treatment delivered by trusted professionals
Attention to physical & environmental needs
Involvement of, & support for, family & carers
Continuity of care & smooth transitions
Picker Institute Europe, 2009

16. Key points on the care pathway (Non-acute care)
Access
Assessment
Community care
(including discharge)

17. Key points on the care pathway (Acute care)
Assessment and referral in crisis
Hospital
care
Discharge/ transfer of care
Assessment/ admission under the MHA
Receiving compulsory treatment under the MHA

18. A matrix for service user experience
Dimensions of person- centred care
Pathway of care
High quality care
Key problems triangulated
Possible interventions
Recommendations
Quality statement

19. NICE Quality Standard
10-15 statements of good/excellent practice (aspirational)
Measurables (numerator and denominator)
Structure (evidence of local arrangements that its happening and that this is being measured/recorded)
Experience (surveys, interviews of SUs, showing its happening and this is a good experience)
Action for
Commissioners
Providers
Health and social care professionals
Service users

20. Draft quality statements – community
People using mental health services, and their families or carers, feel optimistic that care will be effective.
People using mental health services, and their families or carers, feel treated with empathy, dignity and respect.
People using mental health services are actively involved in shared decision-making and supported in self-management.

21. Draft quality statements – community
People using community mental health services are normally supported by staff from a single, multidisciplinary community team, familiar to them and with whom they have a continuous relationship.
People using mental health services feel confident that the views of service users are used to monitor and improve the performance of services.
People using mental health services can access them when they need them.

22. Draft quality statements – community
People using mental health services understand the assessment process, their diagnosis and treatment options, and are emotionally supported with sensitive issues.
People using mental health services jointly develop a care plan with mental health and social care professionals, and are given a copy and an agreed date to review it.

23. Draft quality statements – community
People using mental health services who may be at risk of crisis are offered a crisis plan.
People accessing crisis support have a comprehensive assessment, undertaken by a professional competent in crisis working.

24. Draft quality statements – hospital
People in hospital for mental health care, including service users formally detained under the Mental Health Act, are routinely involved in shared decision-making.
People in hospital for mental health care can have daily one-to-one contact with mental healthcare professionals known to the service user and regularly see other members of the multidisciplinary mental health care team.

25. Draft quality statements – hospital
People in hospital for mental health care can access meaningful and culturally appropriate activities 7 days a week, not restricted to 9am to 5pm.
People in hospital for mental health care are confident that the use of control and restraint, and compulsory treatment including rapid tranquillisation, will be used competently, safely and only as a last resort with minimum force.

26. Draft quality statements – hospital
People using mental health services feel less stigmatised in the community and NHS, including within mental health services.

27. How standards will be used – community
Example – Quality statement 6: Timely and effective access to services
People using mental health services can access them when they need them.
Structure:
Evidence of local arrangements to ensure agreed referral methods are in place between primary and secondary care.

28. How standards will be used – community
Evidence of local arrangements to ensure that people with a non-acute referral to mental health services have a face to face appointment that takes place within 3 weeks of referral (and within 2 weeks of any service user request for change of date).
Evidence of local arrangements to ensure service users are seen within 20 minutes of the agreed appointment time.
Evidence of local arrangements to ensure that people in crisis referred to mental health secondary care services are seen within 4 hours.

29. How standards will be used – community
Evidence of local arrangements to ensure service users have access to a local 24-hour helpline staffed by mental health and social care professionals.
Evidence of local arrangements to ensure all GP practices are aware of the local 24-hour helpline number.
Evidence of local arrangements to ensure crisis resolution and home treatment teams are accessible 24-hours a day, 7 days a week, regardless of diagnosis.
Evidence of local arrangements to ensure that people admitted to a ‘place of safety’ are assessed under the Mental Health Act within 4 hours.

30. How standards will be used – community
Process:
Proportion of people with a non-acute referral for mental health services who had a face to face appointment that took place within 3 weeks of referral (or within 2 weeks of a service user request for change of date).
Numerator – the number of people in the denominator who had a face to face appointment that took place within 3 weeks of referral (or within 2 weeks of a service user request for change of date).
Denominator – the number of people with a non-acute referral to mental health services.

31. How standards will be used – community
Outcome:
a) Evidence from experience surveys and feedback that service users with a non-acute referral had a face to face appointment date that took place within 3 weeks of referral (or within 2 weeks of any change of date).

32. How standards will be used
Example – Quality statement 5: Using view of service users to monitor and improve services
People using mental health services feel confident that the views of service users are used to monitor and improve the performance of services.
Structure:
Evidence of local arrangements to collect views of service users to monitor and improve the performance of services.

33. How standards will be used – community
Evidence of local arrangements to have service user monitoring of services throughout the trust, for example using exit interviews undertaken by service users trained to do this.
Evidence of local arrangements to provide the executive board with reports on acute and non-acute care pathways, with a breakdown of the experience of care by culture, ethnicity, religion or other diverse minority groups using services.

34. How standards will be used
Outcome: Evidence from surveys and feedback that service users feel confident that their views are used to monitor and improve services.