The Art of Dying 2018

Transcription

1 The Art of Dying 2018 AN EVALUATION REPORT OF THE GREATER MANCHESTER AND EASTERN CHESHIRE STRATEGIC CLINICAL NETWORKS DYING MATTERS CAMPAIGN 2018 August 2018 Author: Palliative and End of Life Care Network

2 TABLE OF CONTENTS EXECUTIVE SUMMARY BACKGROUND CONTEXT AIM OF THE PROJECT STRUCTURE OF THE PROJECT LOCALITY ART EVENTS GM HSCP EVENTS 15 TH AND 17 TH MAY ENGAGEMENT WITH GMEC LOCALITIES COMMUNICATIONS SOCIAL MEDIA EVALUATION ENCOURAGING DISCUSSION ABOUT DEATH, DYING AND BEREAVEMENT RECORDING FUTURE CARE PREFERENCES THE VENUES SUMMARY FINANCE OVERVIEW FINANCIAL RESULTS FINANCIAL OUTCOME ASSESSMENT PROJECT EXPERIENCES PROJECT LEARNING OUTCOMES ACKNOWLDGEMENTS APPENDICES

3 EXECUTIVE SUMMARY The Strategic Clinical Networks have been engaged and involved in the National Dying Matters Campaign for a number of years, and this year was no different. The theme of the 2018 National Dying Matters Campaign was What Can You Do In your Community? The Greater Manchester and Eastern Cheshire Strategic Clinical Networks (GMEC SCNs) took the decision to support this year s campaign by seeking to engage with colleagues across the Greater Manchester Health & Social Care Partnership, based at both 3 Piccadilly Place, and Churchgate House, Oxford Road. The aim of the project was to engage with and encourage conversations about death, dying and bereavement, through the arts and building on last year s amazing exhibition at The Whitworth Art Gallery. The project also served to highlight the importance of making future plans so that people are prepared and avoid crisis situations where preferences and wishes are not known at the end of life. It was also an opportunity for people to think about what is important to them now. All staff had the opportunity to participate in workshops, visit information stands and view the art submissions. We observed a solid footfall of active attendance and participation with a total of 66 votes registered across both sites (breakdown: 37 from Piccadilly Place, 29 from Churchgate House). Tony Bonser a Trustee for Dying Matters, and his wife Dorothy, attended both days and facilitated four workshops entitled Grave Talk. Both Tony and Dorothy are also passionate champions on behalf of the National Council for Palliative Care (NCPC). All GMEC localities were provided with resource support to help facilitate their own local events and we are pleased to report a total of 61 reported events took place across Greater Manchester and Eastern Cheshire during Dying Matters week. The National Dying Matters campaign is an annual event that takes place in the month of May each year and the lessons learnt from the Art of Dying exhibition event will be invaluable for 2019 planning. 1. BACKGROUND 1.1 Context National Dying Matters is a coalition of 32,000 members across England and Wales whose mission is to help people talk more openly about death, dying and bereavement and to make plans for the end of life. Members include organisations from across the NHS, voluntary and independent health and care sectors, education and the private sector. For the coalition to achieve its aims a fundamental change is needed within society in which death, dying and bereavement will be seen and accepted as the natural part of the life cycle. However changes in the way society views dying and death have impacted on the experience of people who are dying and also the bereaved. A lack of openness can 3

4 affect the quality and range of support and care services available to patients and families including how and where we choose to die. For more information about the National Dying Matters Coalition visit: Aim of the Project The aim of the 2018 project was to engage with all staff across the Greater Manchester Health and Social Care Partnership (GM HSCP) and the Combined Authority to raise awareness of this annual campaign and to enable conversations around death, dying and bereavement in our workplace. Active participation with this annual campaign ensured GM HSCP connection with the Ambitions for Palliative and End of Life Care A national framework for local action , ambition number six which states: Each community if prepared to care. Awareness raising was undertaken to engage, inform and offer the alternative perspective that; Dying Matters. 1.3 Structure of the Project In order to develop the project a task and finish group was formed and chaired by the Strategic Clinical Networks which included the membership below: Name Christine Taylor (Co-Chair) Elaine Parkin Shelley Cunliffe (Chair) Tony Bonser Mark Donaghy Michelle Davies Denise Woolrich Lee Threlkeld Organisation Quality Improvement Senior Project Manager Palliative and End of Life Care Quality Improvement Programme Manager Palliative and End of Life Care Quality Improvement Project Support Officer, Palliative and End of Life Care National Dying Matters - Patient/Carer Representative Communications Lead Events Manager Business Support Officer Business support Officer The task and finish group met either in person or by telephone conference call on a monthly basis. The expertise and support which the membership brought to the development of the project was invaluable. 4

5 2. LOCALITY ART EVENTS 2.1 GM HSCP Events 15 th and 17 th May Following on from the successful art exhibition at the Whitworth Art Gallery in 2017, the Greater Manchester and Eastern Cheshire Strategic Clinical Network (GMEC SCN) Palliative and End of Life Care Team (PEoLCT) decided to use the same medium of art to hold a GM HSCP event to focus the 2018 campaign for colleagues. Experience has shown that art is a good way to engage with people and helps to facilitate conversations. People feel more comfortable and are more receptive to talking about death, dying and bereavement. This is turn increases people s confidence to plan ahead for their own end of life care preferences and choice. It was also announced that the proposed Palliative and End of Life Care Framework was endorsed at the Greater Manchester Health and Care Board on the 11th May. Tony Bonser, Dying Matters Champion, shared his own experience from a family perspective following the death of his son Neil in This was followed by John Herring, Strategic Lead for Organisational Development who performed an emotive guitar piece which he wrote in memory of his own father. Kim Wrigley, Senior Programme Manager addressed guests at Churchgate House and re-iterated the importance of advance care planning and choice for all coming to the end of their life. To support National Dying Matters awareness week 2018 the PEoLC team engaged with GM HSCP as well as Combined Authority staff to produce art to submit into the Art of Dying Exhibition which was held at Piccadilly Place on the 15th May and Churchgate House on the 17th May. The week was officially opened at Piccadilly Place by Jon Rouse, GMHSCP Chief Officer, who reinforced just how important this work is, for all of us, and encouraged staff to get involved. An art exhibition was held throughout both day events in conjunction with other interactive workshops and activities which provided opportunities for staff to engage, and visit information stands which included: Mexican Day of the Dead, Dying Matters, a Memory tree, Advance Care Planning and a Dementia United stand (which aimed to promote Advance Care Planning and having difficult conversations). 5

6 At PP3 a series of workshops entitled Grave Talk took place; this was a café-type space where people could talk about death, dying and bereavement in a private and respectful safe space. The Grave Talk workshops were facilitated by Tony Bonser and his wife, Dorothy who are both experienced in guiding this type of discussion. At Churchgate HayLo theatre presented their acclaimed pieces of work: Sisters, Seagulls and Send Offs and Over the garden fence (written and presented by Hayley Riley and Louise Evans). Both drama presentations took the audience on a nostalgic and thought provoking journey which explored memories, loss, choices, death and bereavement and investigated the different ways in which people cope with bereavement. A copy of our full programme of activity can be found in Appendix B All staff who visited the art exhibition were given the opportunity to vote for the piece of art which resonated with them the most. We are pleased to report that the following art submissions below received the highest number of votes and received The Art of Dying 2018 awards: 1 st Anguish by Sammy Alloway It s that moment that can hit you anytime. The feeling of remembering loss, when your shoulders are heavy, you close your eyes and try to hang on to the image of their face. Even though you know they have gone. 6

7 2 nd Abuela by Sonia Andrade This is a picture of my grandmother, 88, and my son Lucas, aged 3 ½. Her name was Maria Pombo Robles. Pombo means dove and Robles Oak tree in Spanish. She was one of 17 children and had 36 nieces and nephews who all loved her and called her Tia Mana. To me and my brother she was our wonderful Abuela and we loved her dearly. Lucas was her first great grandchild and she adored him and he her. Theirs s was a special relationship. She died in her home on the farm she had grown upon, holding my mother s hand with my brother beside her and her great grandchildren running around the farm playing with the dog. She was rd My Dad by Denise Woolrich Some memories of my Dad. By Denise Woolrich 7

8 Whilst delivering the event at Churchgate House the project team were pleased to receive a visit from Greater Manchester s Mayor, Andy Burnham who remains a champion for this important subject. The project this year benefited from additional input: Lee Threlkeld and Lyndsey Bailey from the SCN, as well as Sheni Ravji-Smith and Emma Culbert, both from GMCA Employers, who brought their talents and ideas to planning and execution. Future events should look at ways of incorporating other networks on cross cutting themes and utilising the skills of others. 2.3 Engagement with GMEC Localities The Team (from left to right): Lee Threlkeld, Lyndsey Bailey, Denise Woolrich, Elaine Parkin, Kim Wrigley, Andy Burnham, Christine Taylor and Shelley Cunliffe The team continue to work with localities to build working relationships, promote open discussion around best practice and generate approaches that will support the GMEC population. A member of the task and finish group was able to engage with localities to obtain their thoughts about the annual national campaign and gather information about planned activity. Reports were received about many of the events took place across Greater Manchester and Eastern Cheshire during Dying Matters week and the GMEC SCN were able to provide resource support to help facilitate locality events. An example of one such event was the Christie hospital, where the team used a Tree of Hope as a method to start conversations: Dying Matters week 2018 christie.doc The full list of reported activities which took place across GMEC can be found in Appendix C 8

9 3. COMMUNICATIONS 3.1 Social Media With the SCN event this year being mainly internal the team utilised social media as a way to promote the annual national campaign amongst staff and notify the public of the work we were doing: However, a number of localities were also visited across Greater Manchester this year, with individual teams themselves taking part in the Dying Matters campaign. 9

10 4. EVALUATION 4.1 Encouraging discussion about death, dying and bereavement When planning our annual campaign the SCN team always have in mind the mission of the Dying Matters Coalition which is to: help people talk more openly about death, dying and bereavement and to make plans for the end of life. The subject is emotive and can be especially difficult for some people, this being the case across the two days. The team always try to handle such situations both sensitively and openly, and the offer of support, including directing staff to the Employee Assistance Programme was available. The team reflected upon this and have come to the decision that future events should have employee assistance programme details included on all outgoing campaign event communications. * although the subject matter can be emotive, it is good to spread the message far and wide, congratulations on the team for organising, I know how much hard work went into this * Great week with really informative and engaging content. Really showing the importance of talking about death and dying 4.2 Recording future care preferences Through feedback received we were able to identify that 63.4% of visitors on the day are more likely to make their own future care preferences known. * I have already discussed some issues with my family but yes this has made me reflect on this and I am more open to discussions now * All comments received via Survey Monkey at: 10

11 4.3 The Venues Both Piccadilly Place and Churchgate House are workplace facilities for colleagues from the GM Health and Social Care Partnership. The Team located and booked meetings rooms at both venues to accommodate the planned events approximately 10 months in advance. The plan was that two smaller capacity meeting rooms at Piccadilly Place would be used to facilitate the workshops entitled Grave Talk, and that one single larger capacity room at Churchgate House would be utilised for drama presentations from HayLo theatre. In both cases, communal areas would be used to house the art exhibition and information stands. Accessing the appropriate facilities personnel at Piccadilly Place was an efficient process and the team received a high standard of interaction and support, from Maraina Archibald and her team. The project team formally thank them for all their assistance. This was not as efficient at Churchgate House due to the team not having previously developed relationships with colleagues there. It is important that we build on the foundations of this work and in terms of lessons learned the team have committed to an ongoing awareness raising of our work via regular use of staff bulletins at Churchgate House, and will also investigate the possibility of information shots via leaflets and booklets in communal areas. 4.4 Summary Responses to the two events were largely positive. The project team worked together to deliver a high quality, well organised and sensitive campaign which highlighted the importance of talking about about death, dying and bereavement at both a personal and professional level. The importance for Advance Care Planning (ACP) ran through the events to highlight the benefits of discussing future wishes and priorities for care with family and friends. The importance of this for people with a dementia diagnosis was firmly linked into the campaign via the drama presentation Over the Garden Fence, through the Dementia United information stand and ACP books and brochures available. As mentioned previously the theme of this year s campaign was: what can you do In your community?. The Health and Social Care partnership is in itself a community of people who care about the health and wellbeing of the citizens of Greater Manchester and its employees. The opportunity to plan and discuss our future wishes for end of life and to support those who are bereaved is as important to people s health and wellbeing alongside all GM programmes, even though our culture is such that there is a reluctance to talk about it. 11

12 Comments received directly on the day indicated that visitors valued the campaign. The experience of this year s event, and indeed previous years, has evidenced that people do want to talk but don t always know how to or where to start. The work of the project team was to bring this subject matter to our work community. This was delivered. * The day was really thought provoking, but the colleagues running the day were very sensitive to the topics dealt with. The day was well planned and thought out and I particularly enjoyed meeting the couple representing their young son who unfortunately died. 5. FINANCE 5.1 Overview There were two elements to the 2018 budget: (1) Resource budget - Hospice UK/ Dying Matters The SCN team were keen to encourage locality action, show support and enthuse teams for the annual event therefore the task and finish group ensured that teams were aware of and able to request stock/ resources pertaining to the campaign. (2) GMEC event expense budget Partnership events were for the most part, team resourced and generated, however some costs were anticipated in order to facilitate events, to provide hospitality to guests, assist active PCP involvement and ensure safe transfer of art and resources between venues. 5.2 Financial Results (1) Resource budget - Hospice UK/ Dying Matters Each locality request for resources was supported which enabled events to be planned across the GMEC footprint and a total of 8,920 was invested. (2) GMEC event expense budget Invoices have been carefully tracked and reported into the project board at regular intervals through the duration of the project. A total of was spent and the team anticipate no further invoices or costs at the time of reporting. 12

13 5.3 Financial Outcome Assessment During the early planning phase, available cash resources were established with appropriate tolerances applied. All costs and expenses have been reported to the project board who have agreed this within levels of permissibility for the quality and profile of the events delivered. A full breakdown of expenditure is available upon request. 6. PROJECT EXPERIENCES 6.1 In order to capture any thoughts and views about the event held at Piccadilly Place and Churchgate House, people were encouraged to write their thoughts and comments in a memory book. Some of the comments received were:- A wonderful idea some beautiful work. This is a great way for people who are grieving to feel like they aren t alone. Well done. What a lovely idea! A very thought provoking display. It brought back many memories some painful but all beautiful. Keep up the good work. A really important conversation that needs to happen (with support given to families and professionals.) Dying does matter and making this easier to talk about and more acceptable. Need to have more events like this!!! Thank you for opening my eyes and helping me have those difficult conversations. Amazing team and support. 7. PROJECT LEARNING OUTCOMES The PaEOLC Team and the task and finish group membership both met to reflect upon the event. Each person had the opportunity to reflect upon the campaign, to consider what went well, challenges faced and make recommendations for future events. All comments were captured and can be found in Appendix D ACKNOWLDGEMENTS The Greater Manchester and Eastern Cheshire Strategic Clinical Network would like to thank everyone who contributed to and supported the project, event day and celebration event. 13

14 With Special thanks to: The Artists The Performers The project task and finish group National Dying Matters coalition Tony and Dorothy Bonser APPENDICES Appendix A: Full copy Art of Dying evaluation Appendix B: Full programme for the day Appendix C: 2018 Locality event schedule Appendix D: Lessons Learned Log 14