Mersey Care NHS Trust: Empowering Service Users & Carers for Mental Health Services

1. MERSEY CARE NHS TRUST • ESTABLISHED 2001 • BASED IN LIVERPOOL • PROVIDES SPECIALIST ADULT MENTAL HEALTH, LEARNING DISABILITY & ADDICTION SERVICES FOR 1m PEOPLE IN MERSEYSIDE • REGIONAL & HIGH SECURE SERVICES • @4,300 STAFF • @£200m BUDGET

2. HUMAN RIGHTS ACT 2000DUTIES OF PUBLIC AUTHORITIES • NEGATIVE OBLIGATION – NOT TO BREACH THE ACT • POSITIVE OBLIGATION – TO RESPECT, PROTECT AND PROMOTE HUMAN RIGHTS

3. ADOPTED A HUMAN RIGHTS BASED APPROACH TO PARTICIPATION IN DECISION MAKING • WHY? A NON NEGOTIABLE • HOW? PARTICIPATION AUTONOMY NON DISCRIMINATION EQUALITY LAW THE PANEL PRINCIPLES

4. PARTICIPATION SCHEME – SERVICE USERS & CARERS HOW? * BOARD LED – LEADERSHIP * RIGHT TO BE INVOLVED IN ALL THE DECISIONS THAT AFFECT THEIR LIVES * RIGHT TO BE VALUED & RESPECTED – OFFERED PAYMENT FOR THEIR TIME *RIGHT TO INFORMATION, TRAINING & SUPPORT

5. WHAT? SERVICE USERS & CARERS AS EQUAL PARTNERS IN: • RECRUITMENT & SELECTION (OVER 3,000 APPOINTMENTS TO DATE) • STAFF INDUCTION & TRAINING • MANAGEMENT – BOARD, MANAGEMENT TEAMS • GOVERNANCE GROUPS • POLICY GROUP

6. SERVICE DEVELOPMENTS EG NEW LOW SECURE UNIT, FAMILY ROOMS • RESEARCH & EVALUATION – SURE GROUP

7. AN EVALUATION OF SERVICE USER & CARER INVOLVEMENT IN MERSEY CARE NHS TRUST COMMISSIONED BY LINDSEY DYER, DIRECTOR, SERVICE USERS & CARERS SURE 2011

8. SURE COMPRISES A SMALL GROUP OF SERVICE USERS & CARERS WHO HAVE BEEN TRAINED TO UNDERTAKE AUDIT, RESEARCH AND SERVICE EVALUATIONS… CATHERINE, CATHY, ANGELA, ITA & VIKKI

9. 2011 EVALUATION • FOLLOWS ON FROM 2005 & 2008 EVALUATIONS • SERVICE USERS & CARERS • TRUST MANAGERS • MONITORING DATA • AGE • DISABILITY • ETHNICITY • CBU

10. METHODOLOGY • POSTAL SURVEYS SENT TO: • 236 SERVICE USERS & CARERS • 87 RESPONSES (37%) • 79 MONITORING FORMS RETURNED • 138 TRUST MANAGERS AND LEADS • 82 RESPONSES (59%)

11. MONITORING DATA • 56% SERVICE USERS • 21% CARERS • 23% SERVICE USER & CARER • 90% WHITE BRITISH; 3% IRISH; 3% AFRICAN; 3% CHINESE; 1% OTHER WHITE GROUP • 53% DISABILITY • 68% AGE 26-59; 32% AGE 60+

12. FINDINGS: SERVICE USERS & CARERS

13. SERVICE REPRESENTATION

14. LENGTH OF INVOLVEMENT

15. WHY BECOME INVOLVED?

17. COMMUNICATION

18. HR (Collette and Alexis) are very good at communicating. I really appreciate the mail shot. I have a real feeling of anticipation when I open it, and always feel cheered after going through it. Have accessed some superb opportunities through this. THANKS, CAROL! Sometimes info arrives in the post after the event has passed. It has been several times. I feel that the communication between staff from the trust has been excellent to me. I have grown and developed new life skills. Email response typically 24 hours. Very good returning calls.

20. It has helped me regain my sense of purpose in life and a lot of my dignity following my breakdown.To have something important to get up for in the morning became my motivation to live and carry on. I hate to think where I might otherwise have been. Being involved with MCT has changed my life. It has given me the opportunity to try and help the way service users are treated and to help change bad practices. Made me feel useful again. As if I have the ability to think and contribute. My input is true, honest and if my experience can help others not do the pain I went through over the past 27 years, then so be it. I just want to be me. Improved self-esteem and confidence. Feeling valued which resulted in improved self-respect and respect from family and friends. Being able to 'treat' family with payment, as felt they’d earned it! Being involved with Mersey Care has transformed my life, from being in a position where I thought I had no place in life to a position of respect and responsibility. I enjoy working with fellow service users, with carers and with Mersey Care staff. I really feel listened to.

21. MENTAL HEALTH & RECOVERY

22. When I was at my most ill, I had no confidence, sense of purpose or motivation. Now I am out and about and involved in all sorts of meaningful activities and it is like I have a new lease of life! The day I met Lindsey changed the course of my life forever and I shall always be grateful for this. Thank you. Overcame agoraphobia by being involved and having to face people. Made me push myself when due to be on a pre-arranged interview panel (recruitment and selection). Getting involved with other service users and carers and staff has allowed me to use skills I have. I always thought I was a bit thick. I never went to school on a regular basis. Mersey Care has given me back my self worth and confidence. I know I will always have a mental illness but at least now I have a voice and I am valued. Involvement with Mersey Care has given me a sense of purpose, greater confidence and most importantly, the opportunity to mix with others and feel valued and respected as an equal. For many years I thought of myself as a non-person, existing not living. On being involved with Mersey Care I have found I have something to offer. Life, once more, has purpose.

23. Whilst caring for my elderly parents I was able to find support. In the dark days after their passing I have felt supported but also been able to offer support. Insight took a long time to achieve but keeps me well.

25. Having a laugh with good friends! Gives me a break from my carer role and helps me meet new people. Helping others like me. I am, by nature, an introvert and have never had confidence when being amongst others, but I have actually managed to speak to a few other service users, without feeling self-conscious or being regarded as 'weird‘. My point of view and experience, I feel, is valued by Mersey Care, also the money is put to good use. There is an opportunity to change practices and alter mindsets of staff.

26. INVOLVED IN CARE

27. Wonderful news from Broadoak where service users were listened to and taken on board by staff, and valued. Well done. There is still room for improvement but we are now more involved and most of the time we are included in what happens to us. Regularly asked for input - great! And consultant regularly asks for my views on treatment - unheard of in "olden days". Discussions with doctors etc more 'holistic'! I think service users/carers who are involved, are more assertive in decisions about their own care and services as a whole. More involvement with the treatment and medication and with care plans. Before I was involved in Mersey Care it was a lot more scary.

28. CHANGES SEEN I feel service users and carer’s have largely earned the respect of Trust managers and they are much more accepted as part and parcel of the way things are done in Mersey Care. I think that the fact that Mersey Care involves service users and carer’s has made a big difference especially in treatment on the wards and around the Trust. We are now seen as people. Every month there's something new to get involved in. If you wish! Improved attitudes of staff to service users, i.e. seen as individuals. Positive effects of Reader in Residence and Everton Projects. Seeing how much effort and care that staff put into their work. I feel a bit more confident with others and have also, at all the events, been made to feel welcome (especially by the Director, Ms Lindsey Dyer - a lovely and competent woman). More emphasis on human rights.

29. ADDITIONAL COMMENTS/SUGGESTIONS To remind service users/carers occasionally that we are all individuals with various mental health conditions and therefore be tolerant/compassionate to others who use Mersey Care. Allow service users and carers to give talks to staff, including doctors and consultants. This hopefully would let staff see things from the patient's side. Involvement in pastoral care. More supervision for those service users and carers who are undisciplined and disruptive at meetings, creating stress for others. Sometimes felt that I needed more support after stressful meetings. I think Mersey Care could make it easier for people by giving them more notice of what's going on. Sometimes I receive mail about events on the day or when they have already happened. Keep up the good work.

30. FINDINGS: MANAGERS & TRUST LEADS

35. COMMUNICATION The systems and paperwork set up by the Director of service users and carers make it straightforward and easy to do the administration and assurance side of things. The central system is excellent and always very prompt in its response. Collette Irving has always been extremely efficient and supportive. She has responded quickly and positively.

38. CHANGES TO ATTITUDE Working with service users and carers has had such a positive change in my attitude. Would like to think I was always caring/compassionate but in this role it has heightened my sensitivity to the needs of others and inspired me to constantly assess my values and opinions. Made me focus on what the job is all about. Become much more explicit that involvement is a human rights issue. It provides both a grounding and focus as to the purpose of the service we provide, and enables challenge and constructive discussion to occur which might not ordinarily flourish. I hope that I always appreciated the qualities and potential contribution of people using services, but this continues to be reinforced by the capabilities and generosity that is shown by people I work with in Mersey Care. Makes the service focus at all times on what's at the heart of our service - the people.

39. CHANGES TO PRACTICE I think I have perhaps moved away from a slightly 'protective' approach to people, which risked patronising and underestimating them. I am more empathic as a person. Service users now play an integral role in core business discussion, especially with any changes, and involvement on a day to day basis ensures that decisions are better informed. Made me think a lot more about how I communicate with service users. More clearly linking involvement of service users/carers to a human right based approach to healthcare. It has resulted in me thinking what additional information I can provide for hospital inpatients during their stay. There is no doubt that the comments and actions of service users and carers are currently helping shape future working practices.

40. Hard to quantify but I would say that I feel that culture is changing all the time from a positive perspective and care is delivered in much more of a partnership. I am more confident approaching staff and asking them to involve a service user in projects that they are doing because I have more confidence it will work because experience has shown me what service users can bring to the table. Gives me support in my decision making. Involvement has really added another dimension to the training and group work I facilitate. Strengthened the information we provide in therapy and research bids. Lets you see past the illness to the person. Increased my motivation and rekindled my enthusiasm for role. Helps build up and develop 'creative' partnerships of interest even where these may at times pose the 'organisation' uncomfortable questions. Real pleasure in seeing service users/carers grow and develop.

41. CHANGES SEEN It is now expected that there will be service user and carer involvement - whereas before it was not initially on the table. I feel now that it's not looked at as 'something to remember' but it's now always on the agenda with everything else. Increased feelings of empowerment and confidence in service users. This leads to increased job satisfaction for staff involved. I believe it really helps address staffs' negative attitudes. Allows service users to be seen in a more positive light and builds their confidence. Bravo. Having service user involvement within the development of the clinical business unit has ensured the direction of the CBU is measured, and balances the strategic direction to meet service user needs along with the challenge of value for money. I have seen service users giving their own presentations at conferences, meetings and events(instead of professionals speaking for them). I think it has done a lot to promote the concept of recovery when staff see living examples in front of them. Service user’s expression of empowerment, having meaningful roles. Reduced anxiety amongst staff about meaningfully engaging service users in Trust business. More positive attitude amongst staff re involvement. Improved reception area. Improved service user information.

42. SUGGESTIONS To have more diverse involvement. Would like to see more involvement from younger members of the community, particularly young males. We need to expand the involvement of service users and carers into the direct service delivery via active volunteering opportunities. In another Trust I have worked in, the service user forum developed a recognised stamp of approval for leaflets and approved policies. It was a useful tool to ensure service user involvement was thorough and valid. The Trust should have a service user on the panel at disciplinary meetings. HR would find ways to avoid this. Users would not be responsible for the decision but their voice could be heard. Further opportunities for paid work that is of value to them (that doesn't put them off losing their benefits). Involvement in 360 degree reviews of staff/PDPs. More people like Lindsey and Carol!

43. Lindsey Dyer has set a tremendous example to all service users, carers and managers and without her none of the involvement would be possible. Surely the benefits everyone is gaining from service user/carer involvement has to be one of the most cost effective initiatives ever? How many people would have been requiring more professional support had they not had these things to keep them well and give them a sense of hope? I for one would have really struggled without Lindsey and the support and encouragement offered by Mersey Care staff. Thank you.

44. PARTICIPATION SCHEME – SERVICE USERS & CARERS • AN IMPORTANT WAY OF MEETING OUR HUMAN RIGHTS OBLIGATIONS TO RESEPECT, PROTECT & PROMOTE HUMAN RIGHTS • GOOD OUTCOMES FOR SERVICE USERS & CARERS • GOOD OUTCOMES FOR MANAGERS • CHANGING CULTURE OF THE ORGANISATION. CONTRIBUTING TO A NEW CULTURE OF RESPECT FOR HUMAN RIGHTS IN THE NHS

45. THANK YOU!