“Making a Difference Together” Event Summary – Hope Church, Newtown, May 16th, 2012

Event Overview

The “Making a Difference Event” held in Hope Church, Newtown, on May 16th was one of three National events organised through the Stronger in Partnership and Mental Health Action Wales Network. The event was funded by the National Leadership and Innovation Agency for Healthcare (NLIAH) and conceived and organised by Powys Agency for Mental Health, PAVO, in association with the Powys Mental Health Alliance.

Prior to the event, Laura Gallagher, County Mental Health Officer, Eleanor Barrow, Participation and Involvement Officer and Freda Lacey, Mental Health Development and Participation Worker went out across Powys and attended Community Mental Health Team meetings, contacted or spoke with all the Psychiatrists in the county, discussed the event with all of the Mental Health Resource Centres across Powys, informed the Powys Teaching Health Board and spoke with other key providers such as Clinical Psychologists and Social Services to discuss participation at the event. We worked in close partnership with the CMHT’s and Resource Centres in getting the information out to individuals using services.

Over 70 people attended the event; more than half the individuals who came represented the service user and carer communities. The rest of the attendees came from both statutory and voluntary organisations involved in delivering mental health services. The key goal of the event was to bring together organisations who offer mental health services together with individuals who either access services or care for people who use services, for the specific purpose of discussing service user experience with a view to providing concrete opportunities for getting involved in the design, planning, evaluation and monitoring of services.

Statutory and Voluntary organisations such as CMHTS across Powys, the Powys Teaching Health Board, the Police and Social Services, together with organisations such as the Citizen’s Advice Bureau, PAVO, Mental Health Resource Centres and Advocacy Services came to the event with a specific agenda. They came with an open view to hearing about service users experience in relation to their services and specifically asked questions such as, “how can we improve our services, what do we need to change, here are examples of how you can get involved”. Organisations were thoroughly briefed beforehand and asked to think of and submit questions or opportunities for involvement prior to arriving on the day.

Service user’s views were asked for and people were encouraged to share insights and ideas. People were informed, prior the event, that this was an opportunity for positive enquiry, not to complain about services as there are other ways to gather these comments, but to really contribute to how services are delivered by sharing experiences and getting involved. There was a strong message of “making a difference together” and this was tangibly felt by people who attended. “The best thing…meeting so many like-minded people wanting to make a difference”!”

We were lucky to have an exemplary Keynote Speaker, Eleanor Longden, who herself had been a service user and now works as a Psychologist in a CMHT in England. She is hugely inspiring, she set the scene at the beginning of the day by challenging conventional ideas and the way professionals and service users and their carers think about mental diagnoses, the impact of medication, being diagnosed with mental illness, how she overcame her experience of being Sectioned, her recovery story and how she has positively viewed and used her experience of mental diagnoses to make a difference. Every bit of feedback we’ve had about the event mentioned the impact Eleanor’s presentation has had. “Eleanor’s talk; the importance of the person, their life, their journey and their needs, and less about diagnosis and the medical model”. “I have to mention "Eleanor Longden",when she stood up and introduced herself and said"I will be talking to you all for 45 minutes" I thought oh god, 45 minutes, how wrong could I be!I could have listened to that brave and courageous lady all day.It was a privilege and an honour to witness”. “Eleanor was truly inspirational”, “Eleanor’s presentation inspired me to continue supporting others”, “Everyone I spoke to was moved by her”.

Eleanor Longden.

Impact of the event

The impact of the event is still being felt and spoken about. Having organised events over many years, we have had the largest amount of feedback forms ever handed back in terms of an event with many positive and constructive suggestions for future events and involvement. Many people commented on the risk we took, as the organising team, in deliberately creating an informal, relaxed, comfortable event, with no name badges, no titles, no introductions of “officials”, no suits and ties, (casual dress), where people didn’t know necessarily who was the Psychologist and who a service user, really emphasising the message, our aim of “making a difference together”. “A pleasant environment…a well organised event with interesting discussion, an excellent keynote speaker, relaxed atmosphere”. “I felt there was an opportunity to be heard”. “I learned more yesterday about mental health and indeed myself in what seemed like a few short hours, than all of my ten years fighting the illness and the system”. “leaving with a feeling of hope….not feeling alone”..

The event started at 11:00 a.m. giving people plenty of time to travel from all over Powys and finished at 4:00 p.m. We organised free transportation to be available from key towns within Powys so people could get to the event. Phill Chick, Mental Health Development Lead Wales, NLIAH, chaired the conference and we ensured we had plenty of long breaks, lots of nice food and drink, a lovely, central location in “Hope Church”, Newtown, we gave people gift bags to take away with them, people were welcomed by service users who were involved in helping to plan the event, we didn’t have formal workshops, but round table discussions which allowed for time to give feedback, to share and listen, each table had a facilitator and note taker and a representative from a statutory service, such as Inspector Brian Jones, Powys Partnerships, Police, Benna Waites, Joint Head of Clinical Psychology for Aneurin Bevin Health Board, Michelle Forkings, Senior Nurse for Adult Mental Health Services, South Powys and Mick Collins, Senior Manager for Policy and Development, Social Services, Powys. There were nine table discussions in total ranging from Social Services to Understanding Medication, Primary and Secondary Mental Healthcare Services” to “the new Care Planning Approach”. People had the opportunity of participating in two table discussions, due to time limits. However many people said they’d have liked to attend all of the table discussions, have longer time to talk and would like a 2 day event next time. Notes for each table were taken and recorded, key themes, linked with feedback from participants have been added to this report.

To finish the conference, we had Mandy Williams, Manager of Participation Cymru, facilitate the final participation and engagement process, which encouraged people to actively put a key learning they would take away from the event on a symbolic road of action which led to a wall where people received the gift of an action word to take away with them. People found this exercise really moving, if sometimes, challenging. People explored their reaction to words such as “Control”, “Change” and “Power” and discussions were facilitated about possible steps people were going to take in their own lives as a result of what they had learned from the day. “Leant so much from listening to other people”, “…I was particularly touched by the gift bags”, “Everyone had time to leave and get home alright”, “This was my first time to a conference. I thoroughly enjoyed it”. “Maybe a two day event”, “longer table times”, “felt there was an opportunity to be heard”. “I don’t normally write letters of praise but you and your team have taken the system and given it a good old shake up and to give us “a voice”, fantastic!” Until yesterday, I thought I was a Victim”.

10 Key Points from the Day

  1. Care Programme Approach, Mental Health Measure and the New National Strategy, people don’t know about these, don’t understand the implication on them and their rights and expectations, or think they are relevant to the things that are important to them, ie, “Surviving and Thriving”.
  2. For too many of us who might experience mental distress there is a chance that our behaviours, in the majority not criminal behaviour, will mean that we are detained in some way by the police. Is it really acceptable for our society to marginalise people in this way?
  3. The poor physical health and lower life expectancy for people in contact with mental health services is just not acceptable. The causes of this are almost exclusively understood as lifestyle issues – more information is needed by staff and individuals using services about the links between poor physical health and prolonged taking of psychiatric medication.
  4. The term “service user” suggests choice yet there is very little choice of services that people experiencing mental distress can access. Services delivered through the public sector are based on the conventional wisdom of illness and psychiatric/medical treatment, and therefore the support that they offer is based on this model. There are few alternative options available to people through public sector funding that are based on the understanding that mental distress is a natural reaction/coping mechanism to stress, trauma, adversity, life experience which would require a different model of delivery.
  5. People want support to find alternatives to medication and support in coming off psychiatric medication.
  6. A major transformation in purpose and relationships is needed with a focus on rebuilding lives rather than reducing symptoms alone and a partnership between equals, rather than ‘experts’ and ‘patients’, equal importance of both ‘professional expertise’ and ‘lived experience’ and a breaking down of the barriers that divide ‘them’ from ‘us’.
  7. Alternatives to hospital admission are needed (e.g. soteria style houses, healing homes model) and access to support out-of-hours.
  8. National mechanism is needed so that individuals can genuinely influence and lend their expertise to national policy, local delivery, evaluation of services.
  9. People feel empowered listening to other stories of survival and recovery. While everyone is different and journeys of recovery are different, inspiration, change in beliefs and action can be felt by everyone through listening and sharing of individual stories and experiences.
  10. A real shift in Powys in relation to collaboration, to working together under the banner of “Stronger in Partnership”, that there is a partnership network, a vehicle for individual’s voices to be heard and that statutory staff work jointly, as partners, with people who use and come into contact with services.

Some concrete examples of what’s changed and is happening as a result of the event.

Police and Service User Involvement

The Police in Powys have invited mental health service user representation to participate in informing police officers and others involved in the “Confidence and Equality Group” about their experience of being detained by the Police and alternative ways of handling incidents relating to people who are experiencing mental distress.

There has been some discussion about the possible use of Care Plans in relation to this activity, but this needs further exploration and debate.

Powys County Council Social Services Review

Social Services are going to be undertaking a review of their services in relation to mental health and will be doing a survey re PCC Adult Social Care Mental Health Services over the next few months to feed into the internalreview of services which is currently on-going. They are hoping this willhelp Powys County Council to decide on the future delivery of services, the structure of the services, help in developing an implementation plan which includes service user consultation and engagement.

Understanding Medication

As a result of the feedback from the event and additional feedback recently submitted as part of the National Strategy for Mental Health Consultation, we are going to be organising an event in November, associated with Stronger in Partnership, about understanding the effects of using medication long-term, the alternatives, different approaches to coming off medication, understanding when medication should be used, exploring Psychiatrist and Doctor’s perspectives and service user and carer’s experience.

Trauma and relationship to Mental Health Diagnoses

In association with Stronger in Partnership, we are hoping to have Eleanor Longden back later on this year as a key note speaker to stimulate discussion and understanding about the relationship between trauma and mental health diagnoses. We hope this will bring together service user involvement with statutory and voluntary organisations.

Conclusions/Key Leanings from this event

  • People came to the event as a result of word of mouth predominantly, but also with encouragement from CMHT, Resource Centres and direct contact.
  • People really valued the fact that it was relaxed, no titles, small numbers, round table discussions which therefore made people feel more at ease and more comfortable – “sometimes big conferences can put people off” .
  • Choice of Keynote Speaker was exceptional, everyone mentioned her. She really opened up the dialogue as a result of her presentation, enabled people to feel like they could risk more and question more.
  • The topics/round table discussions were apt, appropriate and timely. The openness and willingness of statutory and voluntary organisations to listen and solicit service user feedback and act on this was tangibly felt and continues to expand and develop.
  • There was some disappointment not to have any GP’s and Psychiatrists present – in ringing around and speaking with them directly prior to the event, the message was Psychiatrists and GP’s need at least 2-3 months leeway to be available for an event of this nature, there was great interest in coming together, both Psychiatrists and their colleague GP’s, as this doesn’t happen very often – with the new Primary Mental Health Care initiatives as part of the new Mental Health Strategy, a follow-up event specifically relating to this audience is appropriate.
  • People really wanted to know what was going to be done as a result of the event, the learnings and how this was going to be incorporated and used. People wanted to have ongoing feedback and communication about this and see the difference.
  • Putting on free transportation from major towns to bring people to a central location in Powys was invaluable and really provided the opportunity for participation “without that transport, I wouldn’t have been able to come”.
  • The four service users who were involved in the planning and execution of the event were highly valued and provided guidance on the participation activities, how to solicit feedback (which proved invaluable and definitely contributed to the huge number of feedback forms being handed in) and other key areas of focus. They were involved in setting up the event, taking photos, welcoming people and in the post event feedback and reporting.
  • It was felt that a key learning was the benefit of local, regional mental health development teams running and organising local events which proved much more successful then NLIAH or other WG organisers trying to organise events in relation to Stronger in Partnership themselves. There was an acknowledgment that this (and other events) worked because of the relationships, trust and knowledge that local Mental Health Development and Participation Officers have with service users and local services.
  • People do want to be consulted and have their say, but there is a critical need to see the evidence that their contributions are being taken, used and as a result, services do change. Once question that did come up is who gets to decide who is on the National Partnership Board and does this include any service user representation?

Next Steps

  1. NLIAH will ensure that the report from all three national events gets sent through to the new Mental Health Partnership Board when they first convene in October 2012.
  2. NLIAH is heavily involved in the National Strategy for Mental Health and will be providing key recommendations to the development of the delivery plan based on learnings from this event. This delivery plan will be available for review in Autumn of this year.
  3. Through the Powys Stronger in Partnership network, we will continue to provide tangible participation opportunities, emerging from the event and other consultation initiatives in the design, delivery and evaluation of mental health services in Powys.
  4. PAVO will be arranging further follow-up events based on key messages/feedback from the event such as “Understanding Medication” and “What is Mental Illness” in the Autumn.
  5. PAVO will continue to develop and populate webpages with information, relating to recovery, mental health information, what it means to you, (Mental Health Measure, Care Planning Approach, National Strategy and Delivery Plan) and continue to explore and share different ideas, perspectives and understandings surrounding mental health.
  6. We are developing a Powys Mental Health Blog, we will continue to support and spearhead the Powys Stronger in Partnership Network and continue to push the Powys Mental Health Agenda nationally
  7. PMHA will continue to provide tangible individual support for people who wish to participate and get involved in shaping mental health services, continue to provide training opportunities for individuals so the rights and abilities of individuals are known and will continue to ensure individual’s voices are heard and acted on.
  8. Having just completed a series of local consultation sessions about the new National Strategy for Mental Health across Powys, we will be linking the recommendations from speaking with over 50 service users and carers about the strategy with the results of this Stronger in Partnership event to ensure mental health services across Powys are informed of the latest views, feedback and direction from service users and carers.

“The event, when is the next one”?!!, “I hope that we get heard by the government and that things get better….we are all human beings at the end of the day”.