‘Our 24-hour palliative care hub offers a single point of access’
Lead nurse Victoria Thorne explains how redesigning end of life care provision in north Manchester has improved services for patients and made better use of resources.
Lead nurse Victoria Thorne explains how redesigning end of life care provision in north Manchester has improved services for patients and made better use of resources
The need for coordinated, seven-day end of life care in north Manchester was evident from the statistics. Deaths in hospital were higher than the national and regional average. In 40% of cases, there was no medical need for the person to be in hospital in the first place, and research showed 73% of patients would prefer to die at home. Futhermore, 70% of patients felt they were not getting enough support, often ending in a hospital admission.
There is no hospice in Manchester, meaning residents and their families must travel to a facility in Oldham, Salford or Bury, more than 10 miles away. North Manchester has some of the highest rates of cancer in England, including the highest incidence of lung cancer. It is the third most deprived area in the country and seventh most deprived in Europe.
There were also national drivers for change. Nearly half (45%) of people with terminal cancer rely solely on family and friends for support. This lack of support results in people being admitted to the emergency department when they might not otherwise have to be. This is expensive for the NHS and distressing for people at the end of life.
Existing services were providing excellent end of life care, but it wasn’t formally coordinated, and relied on informal networks and communication systems. We wanted to increase patient choice and improve the coordination of care at the end of life, linking hospital, community and primary care, and hospices and volunteers.
Palliative care hub
At the centre of our vision was a palliative care hub, offering an integrated and coordinated seven-day service and providing more holistic support. We wanted to identify and assess patients with a life-limiting illness earlier, with the aim of increasing patient choice and coordination of care at the end of life, and sharing learning experiences.
The North Manchester Macmillan Palliative Care Support Service was developed following the allocation of £560,000 from Macmillan Cancer Improvement Partnership (MCIP) and the successful submission of a business case to North Manchester Clinical Commissioning Group in 2014. I led a clinical working group that designed the model and the hub before it was launched in April 2015.
We have now successfully established an extended, coordinated service that has greatly enhanced palliative and end of life care and support for all patients with a life-limiting illness registered with a north Manchester GP and their families.
The hub provides a single point of access for patients, and links closely with the district nurses who provide most of the day-to-day care for patients. Its fully integrated multidisciplinary team (MDT) includes a community palliative care consultant, GPs, district nurses, community and acute specialist nurses, specialist therapists, including a physiotherapist, occupational therapists, a speech and language therapist and dieticians, assistant practitioners, as well as hospices, carers, volunteer agencies, pharmacies and the local out-of-hours GP service.
There is a robust triage process. A clinician is responsible for the screening and triage of patients based on a priority system from one (seen within two hours) to three (seen within three to five days). There are daily MDT handovers with district nurses to discuss new referrals, complications and patients’ needs and changes. This process has improved communication and ensured we share knowledge and skills.
A weekly MDT meeting held at the hospital also includes social workers and hospital consultants. We look at those patients who have been admitted and how we can get them home sooner. Patients are ‘followed’ into the hospital or hospice by the team and contacted regularly to ensure care is coordinated. This has promoted and improved acute/community integration and there has been a significant improvement in care planning across the hospital and community.
The team had previously been under-resourced and had strict referral criteria, which limited the number of patients seen. The new service employs 10 additional staff, including more community Macmillan palliative care nurses and assistant practitioners. We had to change our referral criteria as it was too specialised: what was needed was a system more inclusive of patients requiring lower-level support. Referrals are accepted from health and social care professionals, family, carers and the patient.
Specialist nurses and therapists are available from 8am-8pm, seven days a week, and we offer a 24/7 helpline, manned after 8pm by the nearest hospice. This service swaps back to the hub the following morning and contacts the out-of-hours GP or the overnight district nursing team as required.
The service is achieving safe, effective and holistic care in the home, and has the potential to support interventions such as IV infusions in the home in the future. Now, 80% of patients on our caseload die in their preferred place of death.
We secured a new out-of-hours agreement with pharmacists to improve access to end of life care medication. As a result we have been able to prevent crises and plan better and, crucially, achieve priority one standards more than 95% of the time.
Every patient on the caseload has a Do Not Attempt CPR option and statement of intent, and access targets for referrals have consistently been achieved: 100% of all patients are contacted on the day of referral.
We are supporting our care homes to reduce the number of people admitted to hospital with palliative care needs. We have worked with GPs to ensure patients are put on the palliative care register, and this has resulted in more than 200 more patients on the caseload and more than 700 on the palliative care register.
To create a more integrated approach, we have engaged our volunteer groups – a resource that had not previously been tapped into. Not only have we ensured we are not duplicating services, but we are now sharing information.
Challenges for staff
There were significant challenges involved, not least the change in working practices for existing staff. The community Macmillan service had to move from a five-day 9am-5pm service to a daily 8am-8pm service. However, we did not lose any staff through the consultation on seven-day working and new team members.
We developed job descriptions and competencies for the new assistant practitioner role. A huge drive was needed to recruit the right people into post to sustain the project.
One of the greatest challenges was bringing such a wide range of organisations and services together. The success of the service is down to being inclusive and communicating. For example, engagement with the day and night district nursing service was crucial to ensure their commitment to the initiative. They are the main providers of palliative and end of life care and see patients sometimes up to four times a day.
At the start of the model design, the work in the clinical group was intense, with varying ideas. Having a patient representative on the panel meant that when we went off course with what we as healthcare professionals thought was needed, the patient could offer their, sometimes contrary, view.
The responsibility to get the model right was enormous: we had been given the funding and the aim and had to decide how to get there. In the end we decided to prioritise the patient over the response times. This meant making sure they got to see the right person at the right time, and then within the right timeframe.
And we did get there. We have had positive feedback from patients, families, carers and other professionals. Staff feel there is a better skill mix, improved communication and better relationships within the team. Response times are better and greater resources have enabled the team to be proactive rather than merely reactive. They report that they have more time to educate patients and families, and lower stress levels.
The new extended service has greatly enhanced palliative and end of life care and support for patients and families in north Manchester. It has been a pleasure working with phenomenal staff from a variety of organisations, and our patient representatives who have been enthusiastic and motivated. I am proud of what we have achieved.
Case study: Michael’s story
Michael, 75, is a published screenwriter, playwright and novelist. He relocated to Manchester four years ago with his wife, but she died shortly after the move.
Michael was then diagnosed with prostate cancer and metastatic bone disease to his spine and pelvis, a prognosis he struggled to accept. He also had a history of anxiety and depression.
As he required symptom management for back pain and wanted to discuss his place of care and place of death, a MDT was arranged. Some concerns were support at home, night care, parking for clinicians and access to the building, as the intercom did not work.
Michael’s GP attended, as well as our specialist GP, clinical nurse specialist, district nurses and assistant practitioner, all of whom addressed his concerns.
‘I am now ready for the end, whenever and however it comes,’ Michael’s feedback read. ‘More than this, I have been able to communicate these feelings to my family, and they too are in a position to accept whatever happens. I can now see my departure in a more peaceful light, rather than being resigned to the inevitable. I’m still positive.’
You can watch Michael talk about his care here:
Victoria Thorne is lead nurse for North Manchester Community Services at Peninne Acute Hospitals NHS Trust