With its roots in primary and community care, it is no surprise that PCURS has flourished. The service had an inauspicious start in September 2018 as a Palliative Care Car weekend pilot set up in response to a rise in regular crisis calls to DHU 111. It consisted of an advanced practitioner with prescribing capability and a registered nurse that allowed for care and prescriptions to be provided in a single visit. It ran for a year and a half before COVID-19 changed its direction.
The pandemic meant that end of life care at home became more pressing, so the service was expanded to seven days a week. Initially, it only covered North Derbyshire for seven hours each day over a weekend, but Derby and Derbyshire Integrated Care Board (ICB) supported the provision of care at home 16 hours per day, seven days a week across the whole of Derbyshire.
Working with partners
The service’s goal has always been to maintain comfort and care for someone in their preferred place of care when approaching end of life. PCURS provides that holistic assessment, treatment and symptom management, prescribing what is needed to remain comfortable, liaising with partner providers to ensure that care is joined up and appropriate.
The PCURS team believes that family and carers need to be involved in this so that they understand what will happen to their loved one every step of the way. To turn what could be the most emotional, heart-wrenching moment in a person’s life into a positive memory, something that gives them comfort, is a big part of what PCURS aims to do.
This does not mean that care is reserved purely for primary conditions. End of life care comes with additional illness and injury that are complicated by underlying health conditions. Treatment of acute conditions remains essential and that, alongside the care, compassion and wraparound support PCURS provides, helps to ensure appropriate care and treatment until other organisations can input longer-term support. Data collection, monitoring of key performance indicators and shared learning with other providers helps PCURS to deliver joined-up care.
Growing in size and impact
When the service expanded, there was very little end of life care experience within the Advanced Nurse Practitioner team, as the majority came from an urgent care background. A small core of interested staff expressed interest in working on PCURS, but training and a clear pathway were needed to ensure sufficient experience was gained.
PCURS also began offering care for children on end of life care, a unique service for a group of patients where consideration and inclusion of the wider family is essential. It is more than just providing them with a choice of where to die, it is directly related to how and doing it in the right way. A resulting PCURS collaboration with Nottingham Children’s Hospital Oncology Team and Derby Children’s Community Nursing Service won a Nursing Times Award.
Supporting patients and families
PCURS sees many patients that have not been involved in care discussions before or know about collaborative working between providers. Patients and their families need to plan for what may lie ahead so conversations such as ‘do not resuscitate’ decisions and anticipatory prescribing are being talked about for the first time. Visits with patients and families are complex and emotive, sometimes taking several hours and multiple referrals.
These are tough conversations for everyone involved that PCURS often ends up dealing with in times of crisis. The service is sometimes the first to inform relatives that a patient has days or hours left to live; can you imagine the different ways people react to that emotionally? PCURS must be ready for those conversations in a compassionate, human and empathetic way.
A monthly survey to check if staff have the right support is carried out with additional training provided as standard, alongside monthly sessions for prescribers and community nurses. This is also offered to 111 staff who are the first point of contact. Monthly staff meetings help to support supervision and debate any challenging situations, acting as a forum for feedback, ideas, discussion, information-sharing and improvement suggestions.
Responding to feedback
From a commissioner’s perspective, the team’s learning and experience gathered is shared with providers and the Joined Up Care Derbyshire End of Life Programme workstreams to improve wider health care provision. Discussions with health partners have resulted in positive feedback and the recognition that this is a service of need, valued highly by patients, their families and carers. But for it to work, it cannot be a default option for providers who have capacity issues, and PCURS now provides feedback to the system to ensure referrals are appropriate to feed into the ‘right care, right place, right time’ ethos.
What PCURS has learned from friends and family tests, staff and provider feedback confirms what the team has heard about the service anecdotally. It meets the NHS national two-hour urgent response time standard for community health services and supports a crisis response service model to help patients stay at home when core services are unable to respond. There is the potential to replicate this model nationally and the team would love to be at the forefront of that. PCURS has continued to collect data and feedback with the intention of gaining further funding.
Dealing with setbacks
It has not been plain sailing and ongoing funding has been a challenge. Despite a bid for ongoing funding being made to the ICB, the service was scaled back to weekends only from September 2023. Despite this, the team and the organisation have been committed to improving the provision of end-of-life care to the patients of Derbyshire.
PCURS knows how valuable person-centred care is when talking about end of life care, probably more so than at any other stage of a patient’s care journey, because family and carers matter. Being able to access support when they are struggling to cope, understanding what is normal in those final days, empowering them to take control of their loved one’s care is vital.
Without it, their default would be to dial 999, knowing their loved one would likely be transferred to hospital – not staying at home where they wanted to be to receive care and die in a familiar, calm environment surrounded by family. In those final moments, how you experience a loved one’s death is what you keep with you as a final memory.
The PCURS team has provided some poignant and personal anonymised reflections from families who have benefitted from Jill and her team’s care. Amongst the many awards and accolades the team has received, it is these words that show the comfort, value and, most importantly, the final memories this team continues to provide for patients and families.
‘At a time of high emotion, worry and disbelief, this team gave us reassurance and honest answers – even if it was not what we wanted to hear.’
‘You were a shining light in a very dark time. You listened and helped, only you gave my brother the attention he needed.’
‘Caring, efficient, sensitive to both Mum and family. Knowledgeable, professional. This is the service we have been hoping for during a very difficult few weeks.’
‘Having been deteriorating for some time, my mother’s only wish was to die in her own home. Without this service she may have needed hospital admission. Neither she or I wanted this.’
For more information about the Markel 3rd Sector Care Awards 2025 winners, click here.
Kirsty Osborn is Deputy Director Urgent Care (Derbyshire) at DHU Healthcare. Email: [email protected] X: @DHUHealthCare