1 Recovery and carers Joanna Fox Anglia Ruskin University

2 Presentation outline What the recovery experience might be like A personal journey of recovery New research: Carers and recovery Carers’ journey of recovery How recovery might translate into practical caring

3 1. What is recovery? Recovery is defined as a personal process of overcoming the negative impact of diagnosed mental illness / distress despite its continued presence. NIMHE (2004) Emerging Best Practices in Mental Health Recovery

4 Exercise – what is recovery? Have a go at the attached exercise to think a little bit about the experiences of recovery…

5 2. Recovery – a personal journey Breakdown at university Friendship Re-building Faith – there must be a reason? Family members Mentorship Something to do Direction Personal steel Career

6 3. What ‘services’ helped me Holistic understanding Challenging at my level Looking at my strengths Being positive Always stretching me Full time education as a student then returning to further training as a social work student Cognitive Behaviour Therapy to re-construct my ‘negative’ ways of thinking

7 Experiences of being cared for By a mother –Supportive but sometimes smothered –An advocate By a father –Slightly more detached –More career focused By a husband –Supported by an equal –Knowing I am never alone but always encouraged –A relationship of choice

8 4. Elements affecting the recovery experience Hope, confidence and optimism Diagnosis Self-acceptance, responsibility, belief and esteem Self-efficacy Self-awareness Negative identity and low expectations Stigma – spoiled identity Thriving – growth beyond the label Powerlessness – removal of identity Reclaiming power and self-determination Physical image Sexual Identity Creative identity Cultural, social and community identity Group identity – activism Spiritual identity Brown, Wendy. and Kandirikirira, Niki. (2006). Recovering mental health in Scotland. Report on narrative investigation of mental health recovery. Glasgow, Scottish Recovery Network. accessed on line

9 5. The recovery model Anthony (1993. p. 13) defines recovery as: “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/ or roles. It is a way of living a satisfying, hopeful and contributing life even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness”. Anthony WA (1993) Recovery from mental illness: the guiding vision of the mental health service system in the 1990s, Psychosocial Rehabilitation Journal, 16, 11-23

10 6. New research on carers and recovery An exploration of the role of carers in the recovery of people with schizophrenia Formative research Participatory User-led –Delivery of a training programme to heighten their knowledge and awareness of recovery –Finding out how caring might be different from a recovery perspective –Evaluating the effectiveness of the training and seeing if recovery might be an effective model to support carers’ experiences

11 7. What I think recovery can bring to caring Positive challenge A belief –improvement is possible –you have to work with someone’s strengths and not with their weaknesses –change is always possible –You are never stuck, you have to keep on fighting

12 Carers journey of recovery

13 a. Recognition of grief Recognition that grief is important Consolation, comfort, kindness, and hope is needed Achieving tranquillity, by whatever means, is a major objective along the recovery highway. And then everything seems OK, for a while, until the next time. This leaves you on tender-hooks, alert for any sign of change. You realise your role as a carer as well as being a family member

14 b. When services become involved Services must listen and respond to carers Carers must be involved and included in planning and treatment. You often know the client in a different way – having lived, loved, worked, and had fun with them, maybe all their life. Carers must be helped to consider their own needs Be real and honest.

15 c. Detaching with love Setting boundaries – not tolerating abuse from anyone. –Mental illness is not an excuse. Consider your own needs Risk – allowing the person to face the consequences of their actions. i.e. no longer rescuing. –If we keep rescuing we may create dependency –People may keep on with their self destructive behaviour and not find the help they need. Developing faith – the person is on his / her own personal journey. Developing trust – they can handle their life and its challenges – with support. They are not helpless. Letting go of total responsibility for ‘caring’ –by developing good relationships with professional staff –Engaging other family members or friends

16 d. Setting a vision or goal for recovery of relationships What could this look like? Have a ‘good relationship’, –see each other regularly, –enjoy each others company, –and lead our own lives.

17 e. Vision for carers’ personal recovery Carers leading a full life, able to maintain equilibrium in face of the ups and downs of the person you care for and about. Ability to detach with love; “I am not abandoning you. I am trusting you to find your own recovery path when you are ready. I am here to help you when I can”. Acceptance of what is. Life isn’t going the way you thought it might and all your feelings: anger, guilt, depression, sadness, bargaining and acceptance are part of the grieving process and have been acknowledged and integrated. Joy can return.

18 How does recovery translate into caring? (FROM MY EXPERIENCE)

19 1. In the beginning… Underlining any positive changes that you see to the service user –You have been happier today –You couldn’t have done that last year Keeping the person occupied in things they want to do, sometimes things that take up time –Going out shopping –Going out for a walk Providing structure –Trying to get the person involved in things that might keep them occupied but things they can do at certain times –Finding a balance between ‘organising them’ and encouraging them

20 2. In the middle… Enabling them to discover what might lead them to recovery –Offering support but using personal expertise to know when to let the person do their own things Not setting the bar too high –Challenging at their level but not too high –Taking into account the need to enable the person to be occupied but also enabling them to discover for themselves Keeping focused on hope and optimism –But trying to avoid being patronising

21 3. As they move towards recovery… Enabling problem solving Enabling them to discover things for themselves but helping them to remember and discover this optimism Being there but remember your own life…

22 Recovery belongs to us all “Recovery is not a gift from doctors but the responsibility of us all… We must become confident in our own abilities to change our lives; we must give up being reliant on others doing everything for us. We need to start doing these things for ourselves. We must have the confidence to give up being ill so that we can start becoming recovered”. Coleman 1999[1]).[1] [1] Coleman R (1999) Recovery: An alien concept. Gloucester: Hansell [1]