It’s Time to Talk About Dying

what to do when someone dies? 

Last year we celebrated the ground-breaking  “My Life My Wishes,” a PTHB Palliative care initiative, focusing on those often difficult questions around death and dying, with the launch of the Powys Advanced Care Planning document. What has become clear as a result of this initiative is that there is a need for a dedicated approach to end of life and bereavement care. What is important to establish from the beginning is how support is co-ordinated and delivered. What do we do in Powys when someone dies?

SATH Swan Scheme

At the moment there isn’t a dedicated bereavement strategy in Powys, it’s a blank canvas with the opportunity to shape services and provision for our local Powys communities. To find out what bereavement services are offered in neighbouring Shropshire we visited the SwanScheme at Royal Shrewsbury Hospital.

.SWAN is an acronym for Signs Words Actions and Deeds.

SATH were early implementers of the SwanScheme, devised by Roy Lily and pioneered by Fiona Murphy in Manchester hospitals. The premise of the Swan Scheme is that “we have one chance to get end of life care right,” so we need to do it well.  In Shrewsbury there’s a dedicated bereavement suite based in the old mortuary viewing suite , opened in 2015, and two end of life care two bereavement rooms, with a special children’s room. It feels like you’re visiting someone’s living room with a welcoming, calm atmosphere. There are pictures on the walls, comfortable chairs with lots of thoughtful and sensitive considerations and attention to detail, such as mood lighting and CD players.

The end of life volunteer service began in 2017, with 23 current volunteers and plans to expand with a SWAN room on each ward. Every individual or family with an end of life care plan through the SWAN scheme receives a memory box containing several helpful items for the bereaved such as tissues, a small ribbon-tie soft bag for jewellery or a lock of hair and a swan bag for the bereaved’s possessions. What is particularly beneficial about these bags and boxes is that everyone at the hospital recognises the significance of the SWAN and takes this in to consideration.

The Rules

thinking outside of the box

An underlying premise of the SWAN scheme is that the rules are there are no rules. Rules can be broken and out-of-the-box thinking is encouraged and welcomed, for example flowers, a favourite food or drink and pets are all allowed, with special pet passports to allow access to the hospital, it’s the little things that can make an end of life experience more personal and less clinical, bringing moments of joy to the final moments of someone’s life.Time is also irrelevant when it comes to SWAN end of life care. It’s possible to share a final Christmas in June or a Mother’s Day in December. What is important is that the death is as personal as possible and as long as it’s safe and kind with no harm to anyone it’s OK. This approach encourages open and honest dialogues around death and dying. Demystifying the stigmas and taboos we cloak death in and making it more acceptable and approachable, making any fears and concerns easier to talk about.

Important Points

Conversations about death and dying are encouraged to be seen as ‘important,’ rather than ‘difficult,’ It’s one of the most significant conversations we’ll have about our life and how we choose to leave it so it’s important to be honest and open. It’s important to take in to consideration, where we want to die, who we want to be there, who is going to represent you if you’re unable to represent yourself. Kathryn Mannix talks about these important conversations in  her short but poignant You Tube Video, “ Dying is not as bad as youthink,” 

Powys Bereavement Launch

The visit to the SWAN scheme at SATH was particularly thought provoking and inspiring with lots to consider moving forward with a Powys Bereavement strategy. Planned to coincide with “Grief Awareness Week,” the Powys Bereavement Project was launched at the Metropole Hotel, Llandrindod on Tuesday 3^rd December The event was well attended with a mixture of statutory and third sector organisations. The launch opened with a video of Julia Samuels MBE of the “Good Grief Trust,” with the message that, “everything about grief and loss is chaotic and messy,” promoting the fact that there are no set rules and we really need to talk about grief, death and dying and bereavement.

Speakers

Several people shared their perspectives about grief and bereavement with the room. Becky Evans from Credu was the first person to address the room. Becky Shared a powerful Vlog with us from Powys young carer Emily Bleakley who cared for her mother during her illness and death from terminal bladder cancer last year. Emily’s story is shared in our PAVOMental Health Blog Becky’s key message to the group was that it’s important to help people with all types of grief and support people with caring during end of life, through to bereavement and beyond.

Sue Westley, chair of CRUSE Bereavement Care spoke next. CRUSE is a national organisation found throughout the UK and Northern Ireland. It’s reliant on volunteers and in Powys has an area co-ordinator based in Newtown. Sue informed us that approximately 600,000 people per year are bereaved. Most people have good social support networks. CRUSE is there for those people who don’t that don’t have that support . CRUSE offer one to one appointments at home or in a safe place, giving support and offering advice to help people in their grieving. They offer different types of support including pre-bereavement, major incident and dementia and also run workshops to support people who are bereaved. Sue highlighted the importance and value of talking, not internalising feelings. With 60 years of supporting people through grief and bereavement CRUSE have now delivered a powerful Manifesto for Bereaved People. They are also planning to recruit more volunteers this summer, if this is something you'd be interested in please contact them at powyscruse@cruse.org.uk

Marion Baker talked to us about the services provided by the BrackenTrust. Based in Llandrindod they offer support to people affected by cancer, their friends and family and carers, providing a range of activities and group support from gardening to singing to mindfulness and massage. They are currently in the process of standardising their bereavement service.

The Samaritans were represented by Alison Davies who described the services offered. All roles at the Samaritans are filled by volunteers, there are currently 80 members of staff in Powys, 40 shop workers and 40 listening volunteers. Their aim is for fewer people to take their own lives. They currently offer support by phone, e-mail and sms. There are always two volunteers and a leader on duty, employing SHUSH listening tips to provide a safe place where people can talk openly about their feelings and experiences.

The morning session ended with an open and honest, heartfelt message from Alison Edwards-Lewis, Palliative Care Secretary with the PTHB, which highlighted the need for a Powys Bereavement scheme to be established. Julie Rowles, Director of Workforce, Organisation Development & Support Services for PTHB thanked everyone and spoke movingly of her own personal experience of grief and loss.The Tenovus Voice Choir joined us for the final moments of the launch. Tenovus is a choir for people affected by cancer. It was set up 75 years ago and has gone from strength to strength in that time. There are 18 choirs in Wales and 2 in London with 1800 weekly singers. Tenovus provides support 365 days of the year and base their support on the fact that singing makes you feel better. Something we were able to experience first-hand as the Llanidloes Tenovus Choir joined us to sing Christmas carols.

Next Steps For Powys

The launch was a powerful first step towards implementing a Powys Bereavement Plan. There was music, cake, laughter and tears and a real sense of a united passion and commitment to supporting people in end of life care and bereavement. The palliative team are in the process of working on a project plan with these initial steps and intentions:

• We want to ensure that everyone who is bereaved in Powys has accessible, individualised and holistic support.
• We recognised the huge breadth of experience in terms of types of loss and grief reactions and that individuals may need very different things, at different times, across a large geographical area.
• We celebrated what support is already there which surprised many in the room, and agreed it needs a central directory for accessibility (with a search engine function, probably through infoengine)
• We explored how grief is totally natural process that does not need medicalising – but it needs to be normalised and supported within community contexts
• We recognised the support needed for professionals working with people who are grieving, and that education and easily accessible information is needed for everybody.
• We recognised that particular kinds of deaths and losses need particular support, for example, death by suicide, miscarriage, death of a child.
• We are committed to work together to radically improve bereavement services in Powys in the next year.

The words of Tiffany, choir leader with Tenovus, Llanidloes stay with me as we move forward with the bereavement project, “Grief is a build up of love with nowhere to go,” Hopefully by coming together and working out what good grief looks like in Powys, we’ll find healthy avenues and channels for the grief.