On a glorious warm Pembrokeshire afternoon, I have the great pleasure of meeting with Luke Conlon to talk about Compassionate Communities, a concept very close to my heart.
‘A Compassionate Community is a whole community approach to End of Life Care, where issues of dying, death, loss and caring is all our business and we need to be embracing each other with more empathy’. Luke explains.
Loss of community, and the loneliness that many in society are facing has been described as a ‘crisis’, and a ‘social epidemic’ with more and more people drawing upon services that were never designed for the level of need they are now being required to meet. This is particularly so with people living with life limiting illness, their caregivers and the bereaved, living lives that are in many ways socially hidden from the community.
Luke has worked in community development most of his life and is a community activist. He has worked with homeless young men and disabled people in London and in Wales has worked with vulnerable people marginalised in our communities, people with learning disabilities, elderly frail people and carers. He now manages a small Community enterprise called Community Choice and Inclusion with his fellow Director, Shelley Morris. It was through this work that he came into contact with Sophie Thomas (recently retired Matron) from Paul Sartori Foundation who was developing a project around Advance Care Planning and the need for all of us to plan for our care needs in the future.
“I have always been interested in the end of life care which I know is made much more difficult for people who are not able to speak or communicate for themselves when that critical crises occurs”. He told me over coffee in Goodwick “Sophie’s work initially looked at what we used to call a Living Will. Now with the passing of the Mental Capacity Act 2007, we call this Advance Care Planning and is a record of our wishes and priorities for our care should we lose the capacity to make it for ourselves in the future. It made sense to me that with some planning and simple conversations we can be clear about what we want for our lives when we encounter a critical illness and how we wish to be cared for right to the end of our lives. It also seemed obvious that we need to do this sooner rather than later.”
The partnership work with Paul Sartori began in 2012 with raising awareness of ACP across Pembrokeshire, Luke told me. We knew that people can be a bit squeamish or reticent to talk about illness, dying and death (something we will all encounter sometime in our lives) so we began by training volunteers to support people to open the conversation on the subject, to invite and encourage discussion between family members and friends so everyone knew what they felt and wanted when they encounter a life limiting illness.
“The people best placed to talk about difficult medical matters, medication, treatments, therapies are nurse practitioners,” Luke says, “but dying isn’t just about medicine and managing physical pain. There is also our emotional state, our spiritual wellbeing, whether we are people of faith or not and these are often things people just don’t talk about before it’s too late.”
Luke tells me that through working with Paul Sartori the work opened his eyes to the pressure on health services and we need to be supporting each other in our family and friendship circles to plan in advance and tell those close to us what our wishes and preferences might be.
I tell Luke about someone I know who died in hospital recently when she would have preferred to remain at home. She had not discussed her wishes with her husband, and he acted out of distress.
“It happens all the time,” he agrees, “and it’s not just the distress to the individuals, it’s also a huge strain on families, friends and indeed on limited Health care resources.”
Luke has worked all over the county, putting on small-scale awareness events alongside Compassionate Volunteers, in areas like Brynberian, Crymych, Letterston, Haverfordwest, Hook, Pembroke, Manorbier, Saundersfoot where people have had a chance to enter into a conversation and find out about information on Wills, Funeral planning, ACP, organ donations and supporting each other through bereavements.
“We went into GP surgeries, schools and community centres with film clubs, pop-up cafes, talks, discussions and how to write your own ACP. These have been lively informative events with lots of humour. We have let people know that planning ahead was a positive and necessary step.”
Through this work, Paul Sartori were able to access funding to employ 3 p/t Nurse practitioners who work closely with GP Practices throughout Pembrokeshire and supporting people living with life limiting illnesses to write down their plans and share with their family and Health professionals. But the other side of the coin is the relatively healthy population that need to be thinking about the future and develop strategies for communities plan for the future needs referred to as Compassionate Communities.
“There is always compassion”, Luke insists, “There may be terrible things happening in the world, but people always have tried to care. Compassionate Communities are a concept that have come from Canada, the United States and Australia. Compassionate Communities are about consciously embracing our communities and not simply leaving it to the Health services to sort it out for us. They are about caring for each other in times of need, or loss, or crisis, of everyone taking care of each other, of growing as human beings through heart to heart dialogues. ”
“Compassionate communities are a recognition of supportive networks that already exist. Where ever people come together there are a wealth of human resources and experiences. Encouraging compassionate activities, and building networks intentionally, brings enormous benefit to everyone who is involved.”
He goes on to tell me about the two different models that have arisen in the UK. One is based in Frome , Somerset and the other in Inverclyde, Scotland.
Dr Julian Abel, who is the Director of Compassionate Communities UK, has been working on the Frome Model since 2016. The main aim was to reduce unplanned and unnecessary hospital admissions and develop Compassionate Communities approach around this.
The project makes the most of natural community supportive networks. It’s about families, friends and neighbours sharing companionship, dealing with the everyday tasks like shopping, cleaning gardening and caring for pets, as well as providing lifts and other services. The project understands the need for community activities where people can connect and share and have a sense of belonging. The area has seen a reduction in unplanned and unnecessary hospital admissions of 30 % in the three years since the project was initiated.
The Frome project also have 500 community connectors who are volunteers trained to identify the needs of individuals in their community and to know where they might be signposted for help and advice around end of life care.
The other project in Scotland, Compassionate Inverclyde, has worked a little differently and is a grass-roots development set up by a Senior Nurse, Alison Bunce. She identified that there was growing numbers of people dying alone in the Hospital with no family or friends around, and although they were surrounded by a dedicated and caring Nursing team, there was no one to hold peoples hand, something that we naturally do as family and friends. She set up a No One Dies Alone initiative in the Royal Inverclyde, with teams of trained and vetted Volunteer Companions taking turns to sit with people dying alone. In the first year they trained over 80 (yes Eighty!)Volunteers and supported 53 people from dying alone.
The Volunteers have also set up additional compassionate supports by identified gaps in the support for people discharged from hospital and returning home alone. The Volunteers now provide each person returning home alone a box with tea, coffee, milk etc plus a hand knitted garment and a welcome home card created by local primary school children.
In addition, they have a Compassionate Neighbour scheme to reach frail elderly people living at home with serious illness and they develop real and compassionate friendships.
“We aren’t talking about the kind of ‘friendship’ one might have with a paid carer, or a health care professional, but a real exchange between people who want to be together and support each other. It’s tricky, I know. Safeguarding is of course a very important issue and this concept really causes professionals to have to step out of their comfort zone, but it has the potential to transform people’s lives and communities in a safe and supportive environment’.
I know Luke has an interest in bringing Compassionate Communities to Wales, so I want to know more about what is planned.
“In January 2019, we set up a project in Pembroke/Pembroke Dock area to support people dying alone in Care homes and in the Hospital called NOSDA. (No one should die alone) At the moment we are training a new group of Compassionate Volunteers and in the first month we have supported 2 men with no family or friends and at risk of dying alone to have support from a Volunteer Compassionate Companion. We are working with health professionals, hospitals and care homes with the intention that anyone who is alone and needs the support of a Companion at the end of life will be able to access that support from a team of trained Volunteers Companions.”
Luke reminds me that It’s Dying Matters (www.dyingmatters.org.uk) Week from May 12th to the 19th.
“We have a half day conference planned for May 17th on Compassionate Communities in Haverfordwest ,” he continues, “ That will be open to anyone who has an interest in growing compassion in our communities and will include interested people, groups, health and social care professionals, and others. Our Guest Speaker, is Dr Penny Sartori, author and expert on NDE (Near Death Experience) People will need to book soon and can contact me for more information as places are limited.”
If you have an interest in looking into all of this more closely then there is also Compassionate Neighb
our groups that meets at Brynberian in the Chapel Vestry twice a month on a Wednesday morning and also in Pembroke that meets on the last Monday of the month. They have guest speakers, learn about developing skills around compassion in end of life and how we can support our family/friendship networks. Recently they worked with Span Arts on a trial memorial app for phones.
Luke has plans for other similar sessions in other parts of the county, all looking at matters of compassion and end of life issues, including planning ahead for our care.
“They aren’t sad, depressing events but humorous, informative, sharing and caring interactions,” Luke assures me and having met him, I feel confident that they will be uplifting and informative.
For more information on Compassionate Communities in Pembrokeshire contact: