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Care Programme Approach

A brief overview of the previous four Stepping Forwards exploring aspects of the Care Programme Approach The Care Programme Approach is the process by which all Suffolk Mental Health Partnership NHS Trust services are delivered

FOREWORD Welcome. Its been a real privilege to work on this booklet and to look back over the previous Stepping Forward events held in both East and West Suffolk. Stepping Forward has become an invaluable opportunity for Suffolk Mental Health Partnership to give information about the Care Programme Approach (CPA) and get feedback on how service users and family carers experience it. The workshops have only been going a short while but they have already had a considerable impact on how CPA is being provided in Suffolk. For example: In the very near future CPA will have its own website that will improve the information available to service users/ family carers and the general public. Without Stepping Forward and the contributions of all those that have attended, this would not have been possible. Thanks to everyone who attends Stepping Forward to help make a difference in the way CPA is delivered in Suffolk. We hope everyone gets as much enjoyment out of looking back over what has been achieved in the previous four Stepping Forward events as we did putting this booklet together. Chris Crisell, admin support

CONTENTS Page no

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Stepping Forward programme Stepping Forward One Stepping Forward Two What happened at Stepping Forward Two Stepping Forward Three Stepping Forward Charter Stepping Forward Four Comments from Stepping Forward Four Recovery (a poem by C. Swann) Work in progress Developing your ideas Conclusion Developmental issues Useful addresses Future activity

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STEPPING FORWARD WITH THE CARE PROGRAMME APPROACH (CPA) SHARING A VISION As a result of the Service User Survey Management Report (2005) the SMHP Trust hosted two workshops looking at CPA and the recovery process. The first for Service users and family carers was on the 8th Sept 2006 at Kesgrave Community Centre. This led directly on to the funding of a CPA & clinical risk manager/ practice educator Post. Jeannie Wright was appointed into this post in November of 2006 (just two days before the consultation for the Refocused CPA document was announced by the Department of Health). During this consultation period the education & workforce development department initiated a CPA education development group involving practitioners, service users and family carers in the planning, delivery and evaluation of CPA training.

From this the following activities occurred during 2007/2008: • A CPA Health & Social Check was introduced. • Service users and family carers commenced teaching on CPA courses in the classroom • The life stories project commenced to provide educational DVDs for training. • CPA practice development groups met in East and West Suffolk.

• The tagged crisis contact card was designed. • Care Programme Approach Association (CPAA) membership for 12 staff was provided by the Trust. • Facility for eight voice recognition Care Plan production kits were made available • A clinical risk & recovery practice educator, (Derek Jones) was also appointed in May 2008. • Larry Nicholas was appointed to the centre for service excellence for public & patient involvement (PPI). • Approval for a CPA web site was given. • Workshops for service users, family carers and staff were commenced under the Stepping Forward banner. • Writing the Positive Risk Management Policy and Refocused CPA Policy commenced.

• The draft for a service user care plan pack and care coordinator resource pack was developed.

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Refocusing CPA has presented an opportunity for substantial changes in the way we work with service users and family carers. The language of Refocusing CPA acknowledges the importance of the relationship between service users, family carers and practitioners in providing person centred services. This booklet traces the process we have followed in SMHP Trust to respond to service user and

family carer needs at both a service and individual level. The purpose of tracing that journey is to identify the status that CPA and Stepping Forward should have within SMHP NHS Trust.

Jeannie Wright. CPA and clinical risk manager/ practice educator

Jeannie Wright.

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STEPPING FORWARD ONE KESGRAVE CONFERENCE CENTRE 27th MARCH 08

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At the first event our message was: The Care Programme Approach (CPA) and care plans are the process we use to make sure you receive properly planned and coordinated care. The event is intended to raise the profile of the CPA process. It is hoped that many users and family carers will attend to share the day and become involved in future developments within the Trust.

Our Speakers for the day: Elaine Hanzak shares her personal journey of her spiral into and out of puerperal psychosis following the birth of her son. She described the stages of her journey including the publication of her book, subsequent speaking engagements and her desire to make a difference for future sufferers.

Aly Gynn, a service user who has been doing a lot of work for the National Autistic Society lately. They have just had a high profile campaign to put through policy to Government about the needs for adults with autism. Len Peace is a family carer who uses his experience of contact with the mental health services to speak at many service user and family carer educational events in Suffolk. Tanya Kennard-Campbell is a registered mental health nurse and has personal experience of recovery. She has extensive experience in delivering “recovery and well-being” workshops to communities and organisations.

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THE WORKSHOPS COMMENTS AND ACTION PLANS Four groups provided six typed A4 pages of comments about their service experience and proposed some actions. Samples of feedback

Actions

1. Communication about recovery is essential, we want more Psychiatrists here to talk to. Many care coordinators did not know about this meeting. The rhetoric of recovery does not compare with reality.

1. Follow up on today and often - make things happen. Improved circulation of event to service users family carers, staff and the public.

2. Set up more ways for clients to provide feedback on experience of services. Expectations of CPA too high, with a lack of communication about our illness. 3. ‘Proper’ employment opportunities are needed for those in recovery; real work and wages help to improve self-worth. Must be simpler to gain benefits when a blip happens. Need more information on all support networks that are available.

2. Create “Buddy” support. Create a website Information/ patient resource centre - or Library. Develop a resource on other services. Help service users and family carers to be fully involved in delivering training – help service users to tell their story. Service users and family carers should be fully involved in the interview process. 3. Training courses needed that assist with self management, body language, presentation skills.

4. Need to see improvements in CPA and clinical practice, access to help is difficult if its not the general practitioners (GP) that is a block confidentiality is used as a barrier - families feel blocked out.

4. Improve communication between all sectors of SMHP and other agencies. Wellness recovery plans to back up CPA. Always provide written information about CPA to service users and family carers and it should be in the waiting rooms and the GP surgeries. We understand that clinicians ‘move on’ but we would expect continuity of how the service is delivered even if done by different clinicians.

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STEPPING FORWARD TWO KESGRAVE COMMUNITY CENTRE 17th JULY 08

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Our speakers for the day:

Workshops

Robert Bolas, deputy chief executive & director of nursing, Suffolk Mental Health Partnership NHS Trust gave an update on our Foundation Trust application and status and the expected outcomes of Refocusing CPA.

Facilitated group work was held to: 1. Critique the CPA Service User Leaflet 2. A CPA Web site - what should it address for you? 3. Identify what positive risk taking should mean in the CPA?

Calling for Life Stories for CPA For some people, the journey of recovery will mean the involvement of the mental health services. This may be in response to a crisis or for others it may be longer term engagement and support. People’s values, beliefs and expectations can have an impact on the way relationships between the individual, family carers and service provider develop. There may be events that could arise throughout the period of contact with the mental health team that influence the relationship. For some there is the experience of disengagement and moving on, which can also present some difficulties. We want to know about your experiences, and if necessary find ways to improve the way the CPA process works.

Peter Moore from the expert patient programme community interest company. Peter talked about the expert patient programme as “The spark that caused a revolution in my life”. The EPP CIC has been working hard to develop new courses designed to meet people’s different needs, including those in marginalised groups. Some of the other courses available include family carer’s courses, a persistent pain programme, staying positive (workshops for teenagers living with long term health conditions), new beginnings (mental health) as well as several disease specific courses.

Dr Sati Sembhi Consultant psychiatrist SMHPT, coastal recovery team spoke about the psychiatrists' role in recovery. Dr Sembhi has also worked in New Zealand where care management is also based on the recovery philosophy. She has specific interests in cultural psychiatry, family interventions and perinatal psychiatry.

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WHAT HAPPENED AT ‘STEPPING FORWARD TWO’ ON 17th JULY 08 The Stepping Forward Event at the Kesgrave Community Centre was the third since June 2006 to explore how service users, family carers and staff experience the Care Programme Approach (CPA) and ‘recovery’ process. Bob Bolas (SMHP director of nursing) and the lead for implementing new guidance on CPA. Bob opened the day’s activity with a talk about the present status of the Foundation Trust application, the Care Programme Approach and the concept of recovery. Bob was keen to attend as he said that for Recovery to become a reality then days like ‘Stepping Forward’ create the opportunity to develop the ‘partnership’ approach with service users and family carers that is going to move things along. Larry Nicholas PPI manager described how the issues raised at the first Stepping Forward Day held in March had been addressed. He gave a progress report on issues such as improving communication and finding ways to offer good quality information to service users and family carers. The CPA website is now more than an idea, and the information technology department have assisted in getting to a point where web pages can now be developed. The next ‘Stepping Forward Three’ has been agreed to be held in Bury St Edmunds in answer to the request of some service users and family carers

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Jeannie Wright had contact with some service users and family carers who will assist her in the training department by their contribution to a ‘life story project’. This will enable people to tell their life experience and how CPA has impacted on that - either good or bad and can be used in teaching sessions with the Trust’s staff. The stories will be captured on DVD and can be arranged in any way that the person felt comfortable with, in person or anonymous. Derek Jones would like to hear from people who may wish to be involved in the development of the CPA website. Our first speaker Peter Moore told us about the expert patient programme. All trainers have themselves used the programme, and Peter told us how it had transformed his own life after being unwell for many years. It was good to hear about the programme content as well as to be inspired by his personal journey of recovery.

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Dr Sati Sembhi attended (in response to ‘where are the psychiatrists’ from the previous Stepping Forward day). Dr Sembhi gave a very clear account of her own professional experience of working with recovery, and explained the importance of choice, individual responsibility and partnership between the service user, family carer and professional. By listening to the expertise of the individual service user and combining this with more general knowledge of mental health research, it’s possible to provide services where everyone feels they have the best information, and the right to make informed choices about their care.

Who we are: Bob Bolas SMHP deputy chief executive, director of nursing Derek Jones clinical risk & recovery practice educator Peter Moore expert patient programme community interest company Larry Nicholas public & patient involvement manager Dr Sati Sembhi consultant psychiatrist

The attendees then divided into three workshops to discuss:

Jeannie Wright CPA & risk manager & practice educator

• The development of the CPA website • Positive risk taking and what it means to us • How we can develop a local leaflet to inform people about what CPA is. Jeannie, Larry and Derek want to thank everyone, not only for attending, but for the positive involvement and contributions made in the workshops.

Jeannie Wright and Derek Jones,

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STEPPING FORWARD THREE QUAKER HOUSE, BURY ST EDMUNDS 30th OCTOBER 08 Our speakers for the day:

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Workshops (samples of feedback)

Robin Murray-Neill works for the Care Services Improvement Partnership (CSIP) as part of the National Institute for Mental Health in England (NIMHE) national social inclusion programme and personalisation team. This involves working with organisations and individuals to educate and inform them about the process of delivering individual budgets for service users. Individual budgets are part of the ‘refocusing the CPA guidance’ as one choice that trusts should be offering to service users.

1. Self Directed Support - with Robin Murray-Neill

• People wanted a transparent system of equal access made available giving greater choice and control in the support that service users receive. • Care coordinators must give helpful information to service users and family carers. “It’s as if when we ask about direct payments they don’t know anything about it.” 2. CPA and Recovery - with Tom Clements & Richard Hodgson

Tom Clements is a member of Suffolk User Forum (SUF) and helped to write the drafts of the CPA leaflet. The latest version of the leaflet was available in the information pack for the day. Tom talked about recovery from his own personal experience. He was presented with an achievement trophy by his colleagues as this was his first presentation of his life story.

• “Recovery is from where I am to where I am going” • “Addressing my aspirations” • “Working towards small achievable goals” • “Working in collaboration” • “Recognising my fear of failure” • “Turning round the ‘can’t do’ feelings” • “Developing assertiveness - that’s a real asset”

Richard Hodgson spoke about his role in the CPA process as care coordinator. Richard is a senior occupational therapist at Newmarket hospital and also undertakes the role of care coordinator. Richard talked about how he and Tom work together in the recovery process

3. How can we make a People's Charter a real and living thing? It was thought that the Stepping Forward meetings should have a Charter. The suggestions were: Charter for citizens including family carers and SMHP staff who attend the Stepping Forward meetings in Suffolk.

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STEPPING FORWARD CHARTER

Stepping Forward Charter S ervice Users, Carers and Staff. T raining and Information Sharing. E mpowerment P artnership Working

The Stepping Forward Group will accept ALL aspects of who I am, my age; abilities; sexuality and gender; my race, culture and spirituality. Stepping Forward Events will be held regularly and in locations agreed by the Group. If required, Forums will be arranged to address specific needs of those of us undertaking specific roles.

S peaking Out At Stepping Forward Events we will all listen to each other, treat each other with respect and make sure that we are heard. We will all be willing to help each other and be willing to allow clarification of what is being talked about if any of us do not understand. A record will be made of the work we do at the meetings. The records will be used to give feedback to our organisations to inform future service developments.

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STEPPING FORWARD FOUR KESGRAVE CONFERENCE CENTRE 19th FEBRUARY 09 Our speakers for the day:

Workshops

Larry Nicholas - trust public & patient involvement manager talked about the public & patient involvement strategy for the Suffolk Mental Health Partnership Trust. Larry facilitated group work on improving involvement in your mental health service. Discussion as to whether the Stepping Forward group has a clear brief in PPI.

1. How can you influence good CPA practice?

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• Participants suggested an assessment for all statutory and voluntary organisations by each other and also service users views of them. • Good practice is tailoring support to each person as an individual.

Larry Nicholas

• Listen to family carers and recognise and act appropriately on their concerns. • Why don’t more staff come to these meetings? They could learn from us.

Nigel Moyes - A resident of the Richmond Fellowship discussed benefits and with Robin Murray-Neill from social care team Department of Health gave the latest news and answered questions about benefits. Chris Crisell - CPA support administrator was able to show the latest version of the CPA website to the audience that had been developed with Donna Frankis (who needs the assistance of her guide dog Nikki) and Colin Williamson.

2. How can we turn the ideas of this group into an official communication channel? • Stepping Forward needs more teeth need more managers and funds for these meetings. • Have more focussed meetings with just one subject and a wider range of feedback mechanisms needed. • Must continue with current projects, the need for training and carry on the good work.

Garrie Parker - Suffolk Family Carers gave an enthusiastic and challenging presentation, sharing his views of how a service user/ family carer council might work.

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COMMENTS MADE AT STEPPING FORWARD FOUR • Concern for people who are unable to attend and feel isolated. How can we attract a wider range of people to such events? • Can we get someone from each community mental health team (CMHT) to come to these days and learn with us and feedback to their teams. • Do staff have enough training about listening and hearing and the time to build trust - these things are valued by service users. Can they be valued by the Trust? • It seems to be about the quality of the relationship - medication is not the only answer. • Recovery meetings would give people a forum to share their experiences, what helped, who helped, what didn’t. A focus on recovery for survivors of psychiatry. • Appreciation of environment of people working together to solve problems.

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• CPA website looks excellent, could be the answer to my questions. • The website looks very interesting and easy to use. People need to access privately and add their comments. • The conference is not age inclusive. • Not sure where stepping forward is leading. • Not Learning Disabilities (LD) focused, more adult mental health (AMH) orientated. • Need more Information about the CPA process. • Not child and adolescent mental health service (CAMHS) focused, more (AMH) orientated. • I don’t enjoy conferences. • Too many abbreviations are used. • Need for a CPA basics day.

• More locally based meetings needed.

• There should be more background information available about the speakers on the day.

• Mental health services should provide low level support in the community to prevent recurrence of illness - people need to feel safe.

• Everyone should introduce themselves around the table to get a better perspective of the direction of the views they are coming from.

• Need a better method of telling the Trust if CPA’s not functioning.

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Recovery to me is:

Walking in a room full of strangers, And not being afraid. Being happy to catch a train alone. Doing that college course you have always wanted to do. Feeling good when someone says hello, Carla, How are you?

Being proud to say, Ive lived through mental illness, Look at me now!!! Being respected for my knowledge, And asked my opinion. Being able to talk to others, Because I,ve been there.

Having the experience to help others Find their wings and fly. To be able to be angry, Without it being blamed on my illness. Lighting up the room, When I walk in, once more. Sharing these feelings with others and being heard Thank you

Carla Swann S.U.F 7th May 2006

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WORK IN PROGRESS

Life Stories:

Training:

The Life Stories DVDs are being made with the generous help and contribution of service users and family carers, and once made will be used in the Trust for teaching purposes only. The DVD is a collection of true stories set in a Care Programme Approach context to illustrate the activities that makes up the CPA. That is: the referral from family doctor or any other agency; assessment; care planning; review and Care Co-ordination. This is done through the experiences of people who have had or still do experience mental distress and the people that support and take care of them. We are interested in the process of recovery from mental distress and the challenges that face people when trying to pick up their preferred lifestyle again.

The DVD will not be copied and will be treated within the Suffolk Mental Health Partnership Trust with the same degree of responsibility that applies to other Service user or family carers data. The idea came about as a result of service users and family carers feeling unprepared for the pressure of a regular commitment to a training schedule they provide for staff about their experience of CPA. To enable their contribution to be available at all times the DVDs are a good training resource. The next DVD to be made is the story of three service users, following their recovery, who wish to illustrate some of the problems encountered by people trying to regain employment after mental illness.

The way people contribute is led by themselves and their involvement is always at a level that maintains their comfort in the process. When someone decides to help, an individual appointment is made with the person at their convenience and it is agreed how to capture their contribution in their chosen setting. To ensure that people are in control of the process and how it is used; a contract is made so that service users and family carers can specify what restrictions they may want to put on their part of the process e.g. they may wish to use another name. People are also free to withdraw consent later on if they change their mind.

Please contact Jeannie Wright for more information on the Stepping Forward DVD. Tel: 01473 329347. email: [email protected]

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DEVELOPING YOUR IDEAS

Through the previous Stepping Forward gatherings you have been talking about how we can improve our services. I hope that by reading the introduction you will have seen what has been achieved so far. At the first Stepping Forward it was suggested that a CPA specific website would be useful. It should provide you with information and also enable you to communicate with other interested people about CPA. Although the website is not yet complete the work is being done to make everything you asked for a reality. The CPA website will be part of the SMHP website that exists now. We have looked at all the comments from the previous Stepping Forwards to come up with a format that is both welcoming and easy to use. Through the work done during this process it was suggested that a logo should accompany the website and give CPA in Suffolk its own identity. The logo will be

decided by service users, family carers and professional (see logo’s below). This gives CPA in Suffolk an instantly recognisable identity and will show a professional approach. The competition closed on 17/5/09. Another project from Stepping Forward Two is the development of the CPA leaflet produced by service users for service users. The leaflet is a good example of how Stepping Forward is closing the perceived distance between service users and professionals. Because those involved with Stepping Forward have been able to work closely with each other we aim to produce a leaflet that is not just informative but written in a style preferred by you.

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CONCLUSION

The Stepping Forward process has:

The value of the Stepping Forward process is:

• Helped to enhance effective communication - e.g. what is CPA; recovery; expert by experience; the role of my Care Coordinator; individual budgets.

• SMHP Trust routinely listening and recording the needs of service users and family carers. • Enabling people in vulnerable circumstances and poor health to get their experiences and views heard.

• Helped to promote effective partnerships; SMHP Staff with – e.g. SUF; Suffolk Family Carers; East Suffolk Advocacy Network (ESAN); Mind; Richmond Fellowship and Suffolk Employment Care.

• SMHP Trust acknowledging the contribution of its customers in adding value to its care delivery.

• Encouraged participation in decision making – e.g. designing.

• In facilitating an opportunity for SMHP Trust to act on the views of service users and the public in its decision making about the Care Programme Approach.

• Information leaflet; content of the day; how we can be more helpful. • Provided an opportunity to debate issues; workshops for key care issues e.g. recovery; service user and family carer involvement; positive risk taking; direct payments and individual budgets. • Helped to ‘capture’ the creativity of individuals and groups in finding new solutions to problems e.g. communication by website; text; buddy system; life stories; training and poetry.

Jennie Wright and Derek Jones in the office.

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DEVELOPMENTAL ISSUES

• For SMHP Trust to cement the joint work of the education and workforce development department and patient and public involvement by jointly funding the Stepping Forward Programme for the future.

• Enable our local service groups and staff to acquire the skills and resources needed to ensure that all people can be effectively involved in decisions about the delivery of secondary mental health services.

• To provide an annual budget for the Care Programme Approach developmental work e.g. facilitate the “buddy” system; text service; personalisation programme.

• Please contact Jeannie Wright for more information on the Stepping Forward DVD. Tel: 01473 329347. email: [email protected]

• To provide resources to enable the CPA website to “go live” and be maintained for service users; carers; staff and the public and also to allow the publication of the CPA service users leaflet. • To integrate the Stepping Forward programme into the clinical governance strategy for SMHP Trust. • Enable the voice of hard to engage groups to be heard in more creative ways, these are; black and minority ethnic communities; older people; people with learning disabilities; disabled people; children and young people who receive services under the Care Programme Approach.

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USEFUL ADDRESSES

Suffolk User Forum Suffolk House, St Clements Hospital, Foxhall Road, Ipswich, IP3 8LS

PALS Office St Clements Hospital Freepost RRKY-AAKL-UEUS Suffolk Support Services P.O. BOX 170 IP3 8PS

ESAN East Suffolk Advocacy Network St Clements Hospital, Foxhall Road, Ipswich, IP3 8LS

Education and Workforce Development Department, 1st Floor, St. Clements Hospital, Foxhall Road, Ipswich, IP3 8LS.

Suffolk Family Carers Units 6 & 8 Hill View Business Park, Old Ipswich Road, Claydon, IP6 0AJ

Respite 3 Constable Court, The Street, Belstead, Ipswich, IP8 3LY

Public & patient Involvement Larry Nicholas PPI Manager Foundation Trust Project Office St Clements Hospital Freepost RRKY-AAKL-UEUS Suffolk Support Services PO BOX 170 IP3 8LS SMHP Voluntary Services Mark Stewart Voluntary Services Manager Suffolk Mental Health Partnership NHS Trust Foundation Trust Project Office St Clements Hospital Foxhall Road Ipswich IP3 8LS

FUTURE ACTIVITY

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Stepping Forward Five Kesgrave Conference Centre 21/05/09

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Stepping Forward Six Quaker Meeting Room, Bury St Edmunds 20/08/09

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Stepping Forward Seven Kesgrave Conference Centre 19/11/09

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Stepping Forward Eight Kesgrave Conference Centre 18/02/10

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USER AND CARER INVOLVEMENT WITHIN THE CARE PROGRAMME APPROACH (CPA) PROCESS IN SMHP TRUST

Our successes 2007/2008 The Care Programme Approach (CPA) and Care Planning is the process we use to make sure you receive properly planned and coordinated care.

Involvement as Service User’s and Carers 1 - Service Users Engaging as partners in their own Care Plan 2 - Carers engaging as partners in the Carers Assessment and Care Plan. 3 - CPA Training Development Group 4 - Users & Carers lecturing in the CPA Classroom 5 - Contributing to the CPA stories project

Involvement with Clinicians 6 - Suffolk (West) CPA Practice Development Group 7 - Suffolk (East) CPA Practice Development Group 8 - Contributing in an Open Event like todays.

Involvement with SMHPT Management 9 - Suffolk CPA Practice Development Group 10 - Standards Committee

11 - Future Involvement with the

Foundation Trust

NORTH

S.U.F. WEST

© 2009. SMHPT. Ref: Comms/SMHPT/0154

EAST