Palliative Care Northumbria

Northumbria Healthcare NHS Foundation Trust

General Summary

Palliative Care Northumbria has been transformed over recent years by integrating multiple small services to create a single comprehensive Palliative Care service, alongside community services and social care within one organisation. This enables patients to receive the right care at the right time in the right location. This has been supported and strengthened by ambitious and innovative partnership working with multiple organisations including Marie Curie, Macmillan Cancer Support and North Tyneside CCG. We are making a difference to patient care and the patient experience by:

  • Supporting patients to stay at home and thereby avoiding preventable acute hospital admissions
  • Seeing patients quickly when in hospital and their preferred place of care is quickly facilitated (when clinically appropriate and safe) and supported in a timely manner once home
  • Being able to admit patients directly to an NHS inpatient specialist palliative care unit, often the same day the referral is made.


Northumbria Healthcare NHS Foundation Trust covers 2 CCGs (North Tyneside and Northumberland) and a huge geographical area. The palliative care service had grown up piece-meal and was operating Monday-Friday 9am-5pm. The hospice death rate by our population was much lower than the national average reflecting that there were no local inpatient hospices. It was recognised that patients and their families would receive a better experience from a team that was unified across the Trust, working to common standards with a common leadership, purpose and vision.


Northumbria Healthcare NHS Foundation Trust has a model of clinical leadership. Palliative Care Northumbria is led by a clinical Head of Service who works with a senior manager, operational manager and the MarieCurie @ Northumbria Palliative Care Matron. This structure provides both continuity and an injection of fresh ideas when a new Head of Service is appointed. This team led the planning and delivery of the service change, which was a gradual process over several years.

Innovations & Partnership working:
Palliative Care Northumbria has had novel NHS inpatient Palliative Care Units (PCUs) in North Tyneside and Northumberland since 2009 and 2012 respectively. Both are supported by a full consultant on call rota

  1. The unique MarieCurie @ Northumbria partnership created by working with Marie Curie and CCGs enabled:
    –  First matron post in palliative care
    –  Expansion of the hospital palliative care liaison team with a range of nursing skills/ bands
    – Development of a new 7-day Rapid Response community palliative care who support patients in urgent need & help them to remain in their preferred place of care
  2. Our hospital Palliative Care Teams used to work separately in 2 DGHs. When Northumbria Healthcare NHS Foundation Trust opened its flagship Specialist Emergency Care Hospital in 2015 our teams merged & expanded to provide a hyper-acute palliative care service, as well as continuing on-going work into the DGHs
  3. Our Care Home Team, in partnership with North Tyneside CCG, was set up to improve the quality of care delivered to patients living in the care home sector and avoid unnecessary hospital admissions
  4. There has been a longstanding relationship with Macmillan Cancer Support with some adopted posts, and befriending, bereavement and information services working across all areas of our service.

More recent developments include:

  • The social workers within Palliative Care Northumbria were new posts set up by the Trust through partnership working with Macmillan to provide specialist social workers for palliative care patients
  • The Community Palliative Care Teams work in different geographical patches. There was inequity of professions within the teams, which has been rectified. Through having close partnership working with Macmillan, most of these posts have been adopted by Macmillan
  • Palliative Care Northumbria has two teams that provide carers to patients at home. In North Tyneside this service is called Community Nursing Support Team (CNST) and was commissioned by North Tyneside CCG. Northumberland has Rapid / PaCH / Macmillan carers. All staff have now been adopted by Macmillan due to our close working partnerships with them and are due to be renamed Macmillan Carer Support Team (North Tyneside and Northumberland respectively).

The transformation of the service from multiple small services to a comprehensive unified service has been successful, helping to improve the patient experience, as demonstrated by:

  1. Increase deaths in usual place of residence (including care homes), increase deaths in palliative care settings, reduction in acute hospital deaths
  2. Patient experience feedback has demonstrated outstanding care. Since real time measurement started on the wards in 2011, the average score for overall care is at 98%. The score has never dropped below 96%. See additional supporting evidence.
  3. Significant increases in number of patients and range of diagnoses seen by hospital liaison team

Below are some specific examples of the impact of Palliative Care Northumbria from across the service, much of which is attributable to the partnership working allowing development and expansion of the service:

  • Between 2008/9 and 2015 since moving to a more integrated service, including palliative care units (PCUs), there has been a notable increase in death of usual place of residence (increasing from 39. 1 to 53. 9% North Tyneside, and 39. 3 to 47. 6% Northumberland) , combined with an increase in deaths in palliative care settings and a reduction in acute hospital deaths.
  • Both PCUs participate in the Trust patient experience survey where patients are asked to rate their care across a variety of domains. Both PCUs are among the highest scoring wards across the Trust. Comments in the last couple of months from patients and relatives include:- We have only been in for a few days but in that time they have shown us compassion, care and love.
    – They bring ice lollies around and they make sure dad’s mouth is kept clean;
    – The nurses are the icing on the cake, the backbone of the NHS. I am pleased I came here. They bring the level care to a whole new meaning
  • Number of patients seen by hospital liaison team has increased by 100% from 2014 to 2016, with a 200% increase in the number of face to face contacts with patients. The range of diagnoses seen has increased. In 2014 74% patients had a malignant disease and 26% non malignant, increased in 2016 to 64% and 36% respectively
  • In 2016-17 care home team helped support almost 81% patients to remain in their nursing home until death
  • The Rapid Response community palliative care team had 1337 referrals January � June 2017, with only 3% of those patients being admitted to hospital or hospice.

The Future

The partnership working, reconfiguration of service and clear leadership structure has enabled the service to build a stable foundation. Investment in individuals through education, mentoring and instilling of values of compassion, enables team to have a wider impact as it moves forwards. The service meets internally, with our partners and with other national leading services to learn, improve and share ideas. This is a dynamic team that is rightly proud of its achievements but continues to seek opportunities for further improvement.

Partnership working has helped us reach more patients, making more people aware of the service. 90% staff surveyed about the hospital liaison team rated the overall service as good or very good; all respondents felt that if the service was not present the quality of end of life care would be diminished and that they would struggle to be able to achieve patients preferred places of care and death. There is a monthly palliative care steering group between medical directors of the Trust and the palliative care leadership team, meaning that at the most senior level the Trust is aware of and supportive of the initiatives and developments within Palliative Care Northumbria.

Standing Out

Palliative Care Northumbria stands out as an initiative because it has critically appraised its service and worked with multiple partner organisations to make a major difference to patient care:

  • Patients are supported to stay at home, thereby avoiding preventable acute hospital admissions
  • Patients are seen quickly when in hospital, their preferred place of care is quickly facilitated (when clinically appropriate and safe) and supported in a timely manner once home
  • Patients are able to be admitted directly to a local NHS inpatient specialist palliative care unit, often the same day the referral is made.

Key Learning Points

  • To be brave enough to challenge the norms within your service
  • To ask how things could be improved, and ask this from the perspective of a patient or family member
  • To ask what would improve the experience of a patient who uses your service
  • To have a model of clinical leadership � to empower those staff who are working directly with patients, and support this with a team of managerial staff who can help realise the clinical vision
  • To have discussion with those who may be natural partners or allies of your service. They may have similar ideas which are better achieved by working together.