Carers’ Support Services in Middlesbrough Involving carers in service development and evaluation Heather Watson Carers’ Support Team Lead, Middlesbrough and Stockton Mind Dr Deborah Harrison North Of England Mental Health Development Unit (NEMHDU)

Service Background Born from an existing group of mental health carers in 2004 Funded by the PCT now CCG Flexibility to shape the service to meet 6 key outcomes Flexibility to offer support as and when needed

What does the service offer? 1-1 emotional support Information and advice Peer support groups Workshop style courses focused on wellbeing ‘Me Time’ groups Advocacy Carers’ Support Plans One-off information events

The Triangle of Care, Carers Included: A Guide to Best Practice in Acute Mental Health Care (Carers Trust, 2013)

Consider the Carer Training Aims of session: To increase the understanding of the mental health carer role To understand the needs of mental health carers and establish more effective ways to support them To recognise the value of including and involving carers in the care of their relatives or friends To recognise the valuable contribution that carers make to society What the session covers: Who are carers? What do mental health carers do? Carers rights and legislation Communication and confidentiality Relapse and recovery in relation to carers How we can support carers better

Evaluation Methods Aim to explore carer experience of the service and any reported health, wellbeing or wider outcomes Client survey of 85 carers (40% response, n=34) Semi-structured interviews with carers (n=11) Qualitative session with the programme team Carer involvement/engagement included providing feedback on study aims and evaluation tools, monthly newsletter updates and a final dissemination event Aim was also developmental, in the sense that the service team wanted to use the study to help them look at how data can be collected moving forward, any gaps in current processes etc. Survey explored a) Experience of using the service and b) subjective perceptions of any changes to health, wellbeing, quality of life. Profile, service-related journey, satisfaction ratings with different aspects of the service, any changes to overall health, stress levels, family relationships, other aspects of life etc. Agree/disagree items statements related to confidence, coping, perceived ability to achieve goals. Also opportunities for open-ended response. Interviews took place over the telephone to maximise resources, however other options were offered.

Key Findings Extremely high levels of satisfaction Improvements in self-rated health and wellbeing, stress levels, family relationships and leisure time activities Improved confidence, ability to cope and emotional strength; reduced isolation ‘I have worked myself from a very dark place to somewhere I feel more comfortable, and with their continual support I become stronger on a daily basis… without that service, in all honesty I don’t know where I would be at this moment in time.’ (R27, questionnaire respondent)

Success Factors Skills, characteristics and knowledge of the team Flexible approach – responsive to changing need and variety of support options Accessible service – fast response, easy access and readily available Long-term, dependable and consistent Holistic, person-centred approach Carer support workers described as hard-working, compassionate, easy-to-talk-to, non-judgemental, conscientious. Service described as ‘rare’ and ‘unique’. Unconditional, dependable part of carers’ lives – allows intensive support at times of crisis, and there in the background as a ‘safety net’ at other times.

Contribution of core service elements 1. One-to-one support Opportunity to talk openly – ‘I matter’ Safe, non-judgemental environment Outside perspective and a sounding board Tailored, individual and flexible Not just listening – information, practical help, action plans, signposting 2. Peer support groups No longer alone Meet others with similar experiences Share a joke, ideas, information Reassurance: ‘I’ve been there and things will get better’ ‘Pool information’ to identify service issues 3. ‘Me Time’ craft group Response to identified need for ‘time out’ Socialise, relax and take time for yourself No longer ‘just a carer’ – feel energised Can ‘just be’ - no pressure or expectation Leave caring responsibilities at the door 4. Information sharing and training Source of information and practical advice Things that matter: Legal info, finances, rights, diagnoses Developing skills and building insight into services and conditions Platform for discussion, catalyst for change Point of interest emerged around contribution of individual service elements to overall carer experience. Distinct, unique contribution to the service as a whole. Carers able to dip in and out as needed.

Positive Experience ‘It was just the instant connection with people who knew what I was talking about, understood the kind of difficulties we were having, accepted the situation… The fact I didn’t have to wait, just an instant referral and we were put in touch with somebody who over a long period of time has in all sorts of different ways and at different levels provided help and support… It’s not that I’m forever on the doorstep at Mind but it’s just there in the background and I get involved with things as and when.’ (R01, interview discussion) Report itself has lots of examples and stories to illustrate the success factors – this one summarises quite well (Page 23 of full report).

Recommendations Enhanced routine collection of accessible, in-depth client data (including demographic details, referral routes and outcomes measures) Further exploration of support requirements for under-represented groups (including male carers, those who work full-time, younger carers, more diverse ethnic backgrounds) ‘Looking outwards’: Continued awareness raising, professional training and service promotion (including outreach work and making the Carers’ side of Mind more visible) … In addition, carers also made some specific recommendations for future development, such as the development of additional ‘time out’ style groups with alternative foci, more information sessions with invited speakers, and development work around the physical health of carers.

Full report available online: http://nemhdu.org.uk/publications/ http://www.middlesbroughandstocktonmind.org.uk/projec ts-services/carers-support.aspx heather.watson@middlesbroughandstocktonmind.org.uk 01642 257020 deborah.harrison@nemhdu.org.uk 07793769634 Full report is available on Mind website and on NEMHDU website. We also have some copies of the executive summary here with us.