In partnership with NLIAH and Mental Health Action Wales. Together for The Liberty, Swansea

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1 In partnership with NLIAH and Mental Health Action Wales Together for The Liberty, Swansea Introduction We are going to make it happen. People are the power. Thanks Evaluation Val As part of the 1989 All Wales Mental Illness Strategy, Mental Health Development Officer were established with a role to support and facilitate the development of voluntary sector services for people with mental health needs. Based originally in the 'old' Welsh Counties, the Mental Health Development Officers have established local networks to bring voluntary organizations together for the purposes of sharing information and good practice and for training, policy and service development. This includes local groups for promoting service user and carer involvement, for which there is now a wide range of groups and networks in most Local Authority areas. A regional collaboration between Swansea, CVS, NPT CVS, Sefyll, SNUG, GAVO, Interlink and VAMT saw 160 people attend and discuss how to strengthen the engagement and influence of mental health service users and carers in local, regional and national service planning, monitoring and delivery. As such the central theme of Stronger in Partnership was key and enabled frank discussions to take place relating to real influence, true engagement and effective participation. According to the compiled registration list on the 25 th of May, 165 people attended the event:- Service User 59 Carer s 7 Professional - 49 Academic 4 Not specified - 46 The presentation made me feel optimistic Evaluation Val Presentation topics were: The conference planning team wished to ensure there was an equal balance between being talked at to participatory opportunities. As such, to set the context of the day, Rachel Perkins a consultant and a service user gave her story of 30 years of being a consultant and a director along side 20years of being a service users. Rachel focused on Recovery, A journey of discovery for individuals and organisations. This talk examined the changing roles between professionals and those they care for. Demonstrating a

2 redefinition of engagement where service users are central to the co-production of service design, delivery and evaluation hence moving beyond them and us. Following Rachel and throughout the day were a range of Service user and carer stories that had been specifically developed to be presented on the day. We need to create a centralised network and database for information sharing Evaluation Val Workshop focus The workshops were developed whilst being mindful that the conference was designed for service users and carers. The planning team also wished to ensure that the workshops were informative as well as obtaining specific regional messages that could be used to lobby future service delivery and policy direction. As such the following workshops were included 1) Your care plan your rights 2) Carers measure The New Carers Measure 3) Service user and carer involvement what works for you? 4) A Time to change Verbatim feedback from the workshop groups is available, however key messages have been set out below. The following points were highlighted as cross county issues. Your care plan your rights Interestingly, at the beginning of the two workshops carers and service users were asked to show their hands if they had heard of the Mental Health Measure. Over the two workshops it seems approximately a third had not this demonstrates a greater need for all to promote and market what the MHM is and means to individuals and their carers. Other salient points include Regarding the code of practice on the filling in of a care and treatment plan it says that the plan must only consider as a minimum of one domain. Later it says that the plan must be holistic. It was felt that this needs to be made clear otherwise care co-ordinators may only fill in one domain. Service users should be trained on the measure and they should also be trained to deliver training for care co-ordinators. Care co-ordinators need to take responsibility in discussing with other service providers included in the care and treatment plan to make sure they are providing the requested service. A care-co-ordinator should be the most appropriate for the individual not just allocated to anyone. The Mental Health Measure and the Social Service Bill both talk about giving choice and control to individuals therefore service users should have the choice of direct payments. Service Users sometimes feel intimidated by their care co-ordinator and forget what the issues are yet professionals never ask for the carer s point of view.

3 Psychology waiting lists are huge in Wales and not enough psychologists so an individual can t get one even if they wanted one. England has been given far more psychology services but not in Wales. How does it affect people with learning difficulties etc. if they can t speak up or the care coordinator is not very good? Some service users are not pleased that carers may be able to see their care and treatment plans. Service users need to be informed of their rights on what can be included in their care and treatment plan. Open discussion. Very good. Very informative and pleasant atmosphere Evaluation Val The New Carers measure - The Carers Measure is not an easy accessible document. Welsh Government need to ensure any future publication is written in conjunction with Carers. - Concern that Carers are not able to make referrals under Part 3 of the Mental Health Measure, legislation doesn t give Carers right to refer even though they know the cared for best. Despite a legal requirement to fill out Carers Assessment, carers do not see the value in completing them as believe no changes result. It is widely felt that carers are undervalued where their views are not taken seriously, their needs are not understood and to much focus is on the cared for rather than the carer and cared for. Consideration of psychological therapies for care giver to support them in their role. Information share with carer is limited its is believed that with the Carers Measure and Mental Health Measure, this will continue. Key organisations working within Health and Local Authorities should set good example and have good working policies for carers as employees and service users. Future consideration for investors in carers similar to investors in people. How can we involve you better next time? Its important to note that those present felt there was a strong need to move from involving or consulting them in our service to genuine partnerships between experts in defining challenges and seeking solutions. True engagement is not necessarily sitting around a table and approving plans that have been developed without service user or carer participation. On the contrary, its more about developing ideas and plans together in a range of participatory ways with a joined up workforce that does not promote the them and us culture. Such methods could include - Support and confidence building to engage, accessible venues, accessible times, come to us, appropriate expense reimbursement, demonstrate changes made, courtesy of others opinions, plan more practical involvement or interesting ways to participate, virtual access / video streaming, digital stories, co-facilitated workshops.

4 Practical issues need to be addressed to enable true user and carer participation. This can include - Payment of expenses prior to the conference, timeout spaces available for participants, respite provided and paid for. We need to look at peoples talents. We all have our own. We have come along way Evaluation Val Essentially, Service users and carers wish to be leaders and not lead. Engagement should recognise that Service users and carers are the experts and should be able to run events / meetings etc themselves where they have set the agenda and are paid for the work undertaken. As such projects should be userled and not run by representative staff or voluntary groups. Its important to recognise that Service users need a voice they are part of the third sector but should not be seen as voluntary sector. This would result in greater ownership of such opportunities and want to be engaged effectively rather than tokenistically. Really made me think about other ways to get involved Evaluation Val Service User and Carer Involvement What works Specific Issues raised regarding involvement - General lack of knowledge of what service user and carer involvement is and what it can achieve - Greater knowledge and understanding is needed within legislation and the measure. - People should be involved in the planning stages not just consultation - Other forms of involvement should be considered not just sitting around a table - More information needed on the financial implications of involvement eg. benefits and tax. Specific issues raised regarding training - Most users and carers need training, especially initially, to become involved. - Users and carers should be fully involved in training staff and volunteers and assist in changing attitudes and culture. - Users and carers should be provided with the tools to carry out training ie. venue, equipment etc. - Training should be fully participant and not tokenistic. There should be courses to remove negativity from service providers Evaluation Val What was apparent is that there is a wide gap between what involvement and engagement means across the region. There should be more joint working and information shared across the areas with more projects that are user-led and organised and not just run by representative staff or voluntary groups. Time to Change

5 No feedback was provided. The workshop leads were not given the appropriate brief and delivered a presentation regarding T2C Wales with no opportunity. General Conclusions Nothing about us without us Evaluation Val User and Carers participation is crucial as it is widely recognized and acknowledged that people experiencing mental ill health issues across the region have the same rights and needs as the rest of society. As such, we should aim to ensure that people who use services and their carers, are genuinely and constructively involved in all aspects of the service planning, design, delivery and evaluation. Across the region, there are a number service user and carer groups who are widely engaged in a range of service development and consultation. The WG and partners needs to solidify and renew this commitment to ensure that service users and carers are listened to and their contribution can lead to real and effective long term influence over how services and planed, developed and evaluated in years to come. Great day! Great Sun! Great Event! Evaluation Val Its important to note, and this has been emphasised through consultation with user and carer groups, that service user and carer participation should not be seen as a one off discrete piece of work, rather it should be seen far more broadly as a way to empower service users and carers to becoming an integral part of mental health service design and provision. As such, not only will commissioners and providers gain the hands on experience of local services but Service Users and Carers will in turn be better equipped with skills, knowledge and confidence to make an active and informed choice about their level of participation in both mental health services and the wider community of which they live. However, to ensure effective engagement and participation, WG strategies need to focus upon building confidence of those who wish to participate. Suitable timeframes for participation, paperwork etc need to be provided to allow for adequate consultation and engagement of Service users and carers. It was widely considered that User friendly materials produced by the WG on the new MHM and mental health strategies are NOT in fact user friendly. Tokenism, is an issue that was continually portrayed across the workshop. Regardless of professional perceptions of engagement, greater feedback needs to be provided to those helping service planning. Feedback should be given demonstrating how user and carer views have been acted upon and being transparent with explanation when they haven t. Honesty is a highly valued quality which is respected by all service users and carers across the region. There are a wide range of opportunities to engage with service users and carers and its important to recognize that the standard public meeting / consultation events are not always suitable for all types of engagement. Its important to recognize a range of methods should be used when engaging effectively with those Service users and carers within the mental health field so that all abilities and disabilities can be catered for. These can be used when looking at strategic or treatment planning. - Involvement in Assessment process - Involvement in treatment decisions - Suggestion Boxes

6 - User/carer written questionnaires o 1 to 1 o Anonymous self completion o Independent 1 to 1 o 1 to 1 working with current / ex service user or carer. - Service users and carer representative forums Consultation events Direct contribution to planning teams and subgroups Membership to committee and boards Service user groups Peer mentoring Facilitation of training Recruitment of Staff Appraisal of staff Development of Newsletters Marketing and publicity of services Involvement in tendering process for services Facilitation of workshops Scrutiny and evaluation of services The above were synonymous with the how can we involve you better. It is evident that a wide range of engagement processes need to be undertaken to enable that do with attitude to change from do unto Graffiti Board