Maidstone Anna Chaplain Elizabeth Bryson has been taking part in the PALLUP Study* speaking up for the importance of spiritual care. We asked her to report on the research and how it might influence the way older people are cared for towards the end of their lives:
‘I am pleased to have been taking part in The PALLUP Study – equipping community services to meet the palliative care needs of older people with frailty approaching the end of life.
‘Julia Burton-Jones (Anna Chaplaincy lead in Kent, as well as our own Anna Chaplaincy lead for training and development at BRF) recommended this. I completed two online surveys in January 2021 and I was then invited to a consensus Zoom meeting on 20 April that year, having already met online with a facilitator on 7 April. This study is from the University of Surrey and is supported by NIHR (National Institute for Health Research).
‘The information about the PALLUP Study says: “The larger study aims to identify and understand the palliative care needs of older people with severe frailty, develop a service framework on the key service features of community palliative care and produce resources and recommendations that best support delivery of this care. The purpose of the two-round online survey is to establish consensus on the specific palliative needs (i.e. needs related to the final years of life) of older people with severe frailty who are living at home (home being defined here as domestic dwellings, including residential care settings, but not including long term care facilities with on-site nursing or medical care). The purpose is also to gain insight into the shared and distinctive features of agreed palliative care needs. Older people will also be given the option to participate through interviews and a facilitated survey.”
‘At the three-hour Zoom meeting in April 2021, I discovered that I was the only Anna Chaplain there. The other participants were health care professionals. After the Zoom, I had a thank you email from Richard Green, who is the research fellow working on the study. Caroline Nicholson is the principal investigator so it is her study. Richard Green wrote:
“We are very appreciative for you giving up your time and we’re particularly grateful to be able to have had your perspective as an Anna Chaplain and have your voice in the meeting, which is hugely valuable for directing this study.”
‘I was asked to be a part of an ongoing reference group, which I have agreed to do. I emphasised the importance of spiritual care for older people and sent a message about the importance of older people who are house-bound having church services and receiving spiritual care at the end of life by, for example, hearing Bible verses, having prayers said and some hymn singing, which is a comfort to the dying and their families.
‘During the Zoom meeting, we saw a video with ten older people and four of their relatives talking. It was very moving to hear their voices, which included comments about missing church. The PALLUP Study research team are keen to make this very moving video available to others for training purposes. Julia now uses this in the Anna Chaplaincy training.
‘On Tuesday 17 May 2022, I attended a follow-up meeting at the University of Surrey at an event to join in with others providing integrated care across health, social and local communities in the southeast. The hosts, the PALLUP Study research team, wanted to use our experience and ideas to forge connections so that together we can cocreate learning and actions that will make a real change in the care of older people. The chair is Richard Vize, a public policy journalist and analyst.
‘It was excellent to go to the meeting at the University of Surrey on 17 May, taking with me Irene Shepherd who is also an Anna Chaplain in Maidstone. We were the only Anna Chaplains amongst the 70 attendees.
‘The others were health care professionals or students doing courses about the care of older people and university staff. They were interested to hear that, as Anna Chaplains, Irene and I, are concerned about the spiritual care of older people living with increasing frailty at home and in care homes.
‘To help focus our thinking, the event incorporated a new, hard-hitting educational film in which older people and their carers talk about what most matters to them. Reflective commentary from local and national stakeholders guided a deep conversation about the configuration of current policies and services and how, together, we can start to shape and adapt them, to tailor our response to the things that most matter to older people.
‘The PALLUP study is a five-year project that recognises the importance of listening to the voices of older people and that changes need to be made in the care and services provided for them. When watching the film we were asked to reflect on: How does it make me feel? What resonates with me? What are the challenges and opportunities? In the discussions following the film we were asked to focus on solutions, and agree and pursue actions.
‘In this moving film, we heard older people living at home talking about practical issues; physical needs; psychological and spiritual needs; continuity and loss. The film showed the courage, sadness and resilience of older people. The comments about spirituality especially moved Irene and me. A lady talked about prayer and said, “if you have a strong faith then that keeps you going”. A man said “God has a purpose for me.” Another said, “this is where you are, make the most of it”. Another man said he used to go to church but could not do so now. I was greatly saddened to hear that, as we know he should have had an Anna Chaplain or someone from his church coming to lead a service in his home. In later discussions, I referred to his comment to raise the importance of listening and providing spiritual care to all former church-goers and any older people who would like to receive spiritual or religious care.
‘After viewing the film we talked in pairs, and then in larger groups, about changes that we are passionate about. I said that I am passionate about spiritual care being provided for all older people with frailty who are former church-goers living in care homes or their own homes. My group focused on the need for every older person to have a key worker who knows the person’s wishes and needs and has regular contact. I pointed out that “knowing their wishes” means listening and if their wish is spiritual care, that should be provided through their local church or Anna Chaplaincy.
‘The feedback session at the end was an interesting time hearing the changes that other groups felt to be most important. These included:
creating a greater understanding of the frailty and ageing journey for young people and families;
encouraging intergenerational support to help manage loneliness;
for care to be more personalised with “it’s all about me” passports;
listening and a shared record system;
also linking younger people to lonely and isolated older people to visit.
‘Irene and I were glad to be at the meeting and to take part in this worthwhile initiative with PALLUP and to fly the flag for Anna Chaplaincy in that context. We hope our comments about the importance of spiritual care influence policy so that all older people living with frailty who are former church-goers and, indeed, all who would like to receive spiritual care, are provided with it. Many like to pray, sing hymns and be reminded that Jesus loves them and is with them. I was recorded speaking about this at the end of the meeting.
‘Richard Green wrote to tell me that: “We have been keen in the work undertaken to date to include voluntary and faith groups in the research, and have older people’s spiritual needs recognised, which the film is a key component of. However, since our professional networks are mostly in health settings this is not always easy to do, and we’d certainly welcome any ideas you have about how to engage our research better with voluntary and faith groups. We have been in contact with the bishop of London and with the research team behind the archbishop’s commission on reimagining care about our programme of work. We had hoped to interview someone from their team for our second film at our event this week, but could not arrange one in time for the event. Caroline will also be, hopefully, writing a blog piece for the commission’s website in the near future.”
‘When I have moved to Norfolk, I won’t be able to attend meetings at the University of Surrey. I hope that other Anna Chaplains will be able to attend with Irene Shepherd to continue to be a part of this important study to improve the care received by older people living with frailty.’
Anna Chaplain at St Michael and All Angels Maidstone
Anna Chaplaincy coordinator for the Maidstone Archdeaconry
* PALLUP stands for palliative upstreaming. Richard Green explained, ‘since older people with advancing frailty have palliative care needs but these are often unrecognised and unmet, palliative upstreaming refers to bringing the skills and provision of palliative care to care providers who will routinely be seeing older people with advancing frailty, rather than as a separate specialism that older people may be less likely to get referred to near the end of their lives.’
We thank Elizabeth for all the work she has done as part of this study and wish Irene well as she takes up the baton. If there are other Anna Chaplains who would like to join her, please do get in touch with us and we will put you in touch with Irene and the study team. email@example.com