At St Luke’s we’ve taken to heart the part we can play in that bigger picture, and we now have our own dedicated integrated care facilitators whose aim is to secure the best and most fluent pathways for every patient who is referred to us, as end of life specialists.
The challenge Sara and Sam have taken on is to build on existing and potential strengths to benefit all our patients and their families.
Whether that’s helping to create a seamless transition between the three strands of St Luke’s compassionate expert care – in hospital, in people’s homes and in our specialist unit – or linking patients with social care providers and voluntary community organisations that can help in other ways, the idea is to break down barriers and make useful links and partnerships that really make a difference.
Their posts are at the centre of a two-year pilot scheme to identify, map out and build good relationships with all the health, social care and specialist providers – both professional and voluntary – available in St Luke’s wider catchment area, including supporters of Plymouth’s Compassionate Communities and Compassionate Friends initiatives.
The idea is to arm Sara, Sam and their colleagues with as much contemporary information and as many connections as possible so they can champion terminally ill patients, help them achieve their preferred place of care and death, prevent unnecessary, undesired or prolonged hospital admissions, and find innovative solutions to smooth transitions.
Sara already has a solid grounding in end of life care from her five years as a health care assistant with St Luke’s Urgent Care Service (EoLUCS), and she also benefits from eight years working alongside paramedics on frontline emergency services.
She had a valuable personal insight earlier this year when a family member was cared for by St Luke’s. Sara explained: “What was lovely was that she was looked after by the St Luke’s Derriford team, then she came home and had fabulous involvement from the Clinical Nurse Specialist and a one-off visit from the Urgent Care Service (EoLUCS) team to get her comfortable, before moving into the hospice for her last weeks of life. She had fantastic care throughout. The teamwork between the three areas was great and really highlighted what we are trying to do.”
Sam, meanwhile, is employing the experience she gained in developing and streamlining services during her 11-year career as a therapy radiographer, both in the UK and New Zealand. She was drawn by the opportunity to make a real difference to patients and expand her field of experience and is taking courses in care planning with Plymouth City College. Since October and November, the women – both mothers with small children – have each been working in their new roles three days a week, crossing over on Wednesdays.
Any end of life journey can enter periods of improvement, as well as deterioration, along the way, and one of Sara and Sam’s most vital tasks is easing the transfer between St Luke’s and other services, making sure nobody slips through the net.
Their input is already having a positive effect for St Luke’s Urgent Care Service (EoLUCS) team and those they look after, enabling a much smoother flow between appropriate sources of care for patients and their families, making sure no one is left without the support they need, while cutting waiting lists and allowing more end of life patients to be seen earlier in their journeys.
Urgent Care Service Nurse Jo Davies said: “Having Sara and Sam here takes a lot of anxiety away from the families and from the urgent care team in the long run. In theory we should just stop visiting someone who no longer needs urgent care input, but where is the heart in that? But if we stay for a longer time, we are not looking after people on our waiting list.
“For example, before Sara and Sam were appointed, we had a patient living over on the moors who had stabilised, but we could not find a package of care for them because there was no alternative in their area. We were with that patient for a long time when our services were not actually needed. Because of that we had other patients we could not get to.”
When a patient’s symptoms are under control and their condition is stable, rather than deteriorating, the team can call on Sara and Sam to discuss, establish and source the practical or emotional help they need at that moment in time, always keeping the door open to return to St Luke’s care when appropriate.
Jo added: “Now that transition process is so much quicker, and we are better able to get to the people who are most in need. The level of care someone needs is not always clear cut, and you need a bit of time to assess what is going on. We can take them on, see how they are, and the patient and family feel immediately comforted and supported.”
Sara and Sam cite a recent example of a woman who was thought to be days away from death, but after home visits from the Urgent Care team her quality of life improved so much that she didn’t need the specialist service, but still needed to feel supported.
“If St Luke’s and Urgent Care were stepping back, although remaining in the background, it was important for us to find the right service she needed at the time. Now she needs Urgent Care again, so our job is to make that transition back easy too.”
Once someone is given a terminal diagnosis it can be difficult to navigate care and advice services and, in the future, the ICF team would like to be involved in these early stages of a patient’s journey.
“We’d like to be there and explain that they can have a lot of help, but it might not always be from St Luke’s. They can call on voluntary organisations for things like transport or someone to do the shopping or pop in for a chat.”
Their aim to help patients and families feel supported from the first point of call with St Luke’s until the end of their own unique journey, recognises that many people won’t initially need the specialist care we offer, but they probably have wishes or desires that could be met by other providers locally, so the more contacts and information they have in their toolbox, the better.
Their growing knowledge includes accessing and developing links with NHS Continuing Healthcare and linking in with Personal Health Budgets (PBH), Adult Social Care and Personal Assistants (PA) allowing patients to have some choice around their care needs at end of life.
“We’ll be working out how a package of care is going to work for a patient, tying in our own care with other charities and organisations as well. It is really about catering for each individual,” they said.
“What care would work for them, what are their circumstances? People think that getting carers in is the only option, but they might only need a personal assistant once a day, and that could be a local volunteer.
“There is stuff we can’t help with, but we can find somebody who can. The first couple of months in this job was us contacting organisations and finding out what is available out there. Once you scratch the surface you realise there is a lot more help available than you realise and most people are unaware of it. There’s a big mix of small groups, especially in more rural communities, with people helping each other.”
Amongst these, Sara and Sam highlight the well-established Brentor and Moor Compassionate Neighbours as a really good model of neighbourhood support that works closely with St Luke’s.
“Their volunteers they do a lot of day sits for our patients and quite a bit of education on end of life in the community. But no group is too small for us to connect with.”
What people want could be something simple like someone needing a wheelchair, suitable transport and a Blue Badge so they can continue going to watch their favourite football team, or someone who would love the company of a visitor to talk to for an hour or two a day.
Sara and Sam’s referrals have been mostly internal so far, but they have recently had contact from GPs wanting to put their patients in touch.
“We’re always happy to hear from groups in the community who can offer support to people with terminal diagnoses. We went to the Social Isolation Conference in Plymouth recently and met a lot of great organisations there. We’re keen to make as many links as we can.”
Jen Nicholls, Nurse Consultant and Head of Community Services, described the appointment of Sara and Sam as a great example of how St Luke’s as an organisation listens to its staff and cares about what is happening at the heart of the workforce.
She said: “The ICF role developed from a Community Team away day where the team identified a gap in provision. The role helps support people in having a choice at end of life by exploring all the available care and resources that are already within the community. This role complements the great work Judy Horne and Anne Dixon (Community Development) are already doing in developing a community where it is a compassionate place for everyone affected by death, dying and bereavement.
“By the ICFs working collaboratively with our partners, other stakeholders, and the voluntary sectors, we are striving to align with NHS England’s Ambitions for Palliative and End of Life Care: A national framework for local actions 2021-26, working towards the six identified ambitions of care. Most of all, that is supporting our patients and their families to have choice at the end of their life and support from a variety of services, developing the personalised individual care needs centred around the patients and their loved ones.”
This Blog is republished from https://www.stlukes-hospice.org.uk/blog-championing-st-lukes-quest-for-integrated-care-that-works/ with permission