Implementing prostate cancer specific palliative care in Northamptonshire

Meet Northamptonshire Healthcare Foundation Trust

The Prostate Cancer Nurse will be employed and managed through the Northamptonshire Healthcare Foundation Trust (NHFT) and based at the Cynthia Spencer Hospice as part of the Specialist Palliative Care Service (SPCS). The post will be match funded by PROSTaid. There are twelve full time palliative care nurses within the SPCS who were originally Macmillan funded to work with patients with all conditions; these are primarily different cancers.

PROSTaid is a local prostate cancer charity founded in 2004 that covers the counties of Leicestershire, Rutland and Northamptonshire. The charity offers local support, information, befriending and awareness of prostate cancer. They also raise funds for new treatment equipment for local hospitals. They currently fund two prostate cancer specialist nurses, one at the point of diagnosis and one working in the community providing palliative care for local men with advanced prostate cancer in Leicestershire. The Leicestershire post provides the model for this post.

The Cynthia Spencer Hospice is a purpose-built 20-bedded unit, managed by the Northamptonshire Teaching Primary Care Trust providing hospice and palliative care services for south Northamptonshire. The Hospice currently serves a population in excess of 300,000 people and admits approximately 400 in-patients each year.

The Cransley Hospice in Kettering also provides hospice and palliative care services for the population of north Northamptonshire. Approximately 90 men are diagnosed with prostate cancer each year. A small number of these will require hospice services but all will have input from NHFT Community teams.

The big idea

Northamptonshire has a higher than national incident rate for prostate cancer. It is estimated that there are currently between 90-100 men with prostate cancer in the county who will be at the End of Life within twelve months. PROSTaid identified a gap in local provision for specialist palliative care for men with advanced prostate cancer. While generic palliative care is provided by the SPCS there is currently no specific service for prostate cancer patients. Prostate cancer patients who are at end of life frequently have complex symptom control needs requiring specialist knowledge and care.

The desired outcomes of the post:

Maximise the quality of life for men with prostate cancer at the end of life
Achieve better quality advice, support and palliative care as it is delivered by a nurse specialist with expertise in their specific disease
Men achieve better support for pain and symptom control
Families and carers receive better support
Ensuring patients are effectively referred for assessments and/or procedures not within the scope of this service
Facilitate patients to achieve their preferred place of care and death
Improve understanding of prostate cancer amongst primary care staff and specialist palliative care so patients receive the best care in a timely and appropriate manner

Finding out what works

The advances in the treatments available for the disease mean that men are living longer with prostate cancer and their symptoms at the end of life. These can be complex, often ranging from bone pain and constipation to anxiety and fatigue.

This role provides:

Access to a disease specific palliative care nurse, who provides the patient with specialist knowledge around their treatment pathways and allows them to feel more confident and in control of their condition. This role can also assist in reducing hospital appointments.
Access to a Health Needs Assessment (HNA) for each patient which is documented. A concerns-led care plan is also left with patients after each visit, allowing them to reflect on any concerns or worries they have and prompts them to bring these concerns up at the next appointment. For men who are given different treatment options to choose from, support from the Prostate Cancer Palliative Care Clinical Nurse Specialist (CNS) can allow them to ask questions and make an informed decision about which treatment option may be the most appropriate for them.
Patients with a point of contact within the community setting, who can refer back to appropriate services and act as a liaison between the GP, district nurses, specialist palliative care team, and secondary care. The role acts as a community key worker for the prostate cancer patient in the last year of life. The National Cancer Survivorship Initiative highlights the need for introduction of palliative specialists early, so that end of life care decisions can be made in a timely way by patients and professionals together.

Lessons learnt

As the role covers the whole county it has been difficult to build relationships with GPs and district nurses. Getting the service known to such a wide area, particularly with GPs, has been difficult so referral forms and criteria with a covering letter were sent to every practice in the county.

Attendance at District Nurse Operational meetings to publicise the service and having leaflets for the service both in acute sites and in GP surgeries and pharmacies across the county has helped. There is only one CNS for this service, so a cap on the number of patients has been put in place as there are too many to be covered by one full time nurse. Additional referrals go back to the general specialist palliative care team. Patients have been prioritised by R.A.G. (red, amber, green) rating.

The key has been regular contact with the Uro-Oncology nurses at both acute hospital sites in the county, along with attending MDT meetings in the hospitals to support integration of the role with secondary care.

Attendance at local support groups in both the North and South of the county has been beneficial, as has publishing an article in PROSTaid’s quarterly newsletter to explain the role and how it supports patients with advanced disease.

Outcomes

95 men have been supported by the Prostate Cancer Palliative Care Nurse
86% of men and/or their relatives reported satisfaction with the care received
100% said they/their relative received good support for pain and symptom control
100% said they felt they were given the opportunity to share their concerns or worries and felt supported
67% of men achieved their preferred place of care/death
Feedback received has indicated that patients feel well-supported and reassured by having a palliative care nurse who is specific to their disease, and have gained valuable insight into the benefits of understanding the treatment pathways that patients follow in the county.
Having strong relationships with the uro-oncology nurses has allowed the post-holder to refer back to them quickly and effectively when required, either for advice about patient’s treatment options or for referral for palliative radiotherapy to assist with pain control. I am also able to refer patients quickly and effectively to other services such as lymphoedema, therapy services, or day hospice.

Find out more

This project has been funded through our Health and Social Care Professionals Programme, thanks to support from The Movember Foundation.

If you would like to learn more about this project, please contact us.

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