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Developing the haematology outreach nurse role

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The role of the haematology outreach nurse at The James Cook University Hospital in Middlesbrough was developed in 2003 to offer holistic, expert support to patients and their carers suffering from haematological malignancies in the community.

Background

The role of the haematology outreach nurse at The James Cook University Hospital in Middlesbrough was developed in 2003 to offer holistic, expert support to patients and their carers suffering from haematological malignancies in the community.

Increasing treatment intensities, clinic time constraints and absence of a clinical psychological service meant patients were not receiving the support they required. Attendances to the ward/day unit with non- specific illnesses reflected this.

Good quality palliative care at home was compromised by the lack of expert care in the community for these rare diseases and the requirement of platelet transfusions.

This post was therefore designed initially to address the psychological and educational needs of patients, though it has developed to encompass many other aspects of care. A pilot study was undertaken to assess the scope for the role.

The aim of the role is to:

  • Communicate the different diagnoses, treatments and side-effects to patients and carers, allowing them to make informed decisions about their treatment.
  • Provide ongoing support to patients and carers affected by haematological malignancies, including palliative care and support for bereaved families.
  • Help patients and their carers develop coping strategies.
  • Facilitate early discharge for the terminally ill who choose to die at home by administering platelet transfusions at home.
  • Reduce the number of hospital visits by providing expert community care.
  • Liaise with district nurses/Macmillan nurses and the multidisciplinary team.
  • Be a point of contact between hospital and community.
  • Work autonomously in the community to provide a high level of specialist nursing care, education and psychological support.

Role variety

Haematological malignancies are a complex group of diseases with many varied treatment pathways of differing intensities, both for different diseases and for individual patients.

As a result my role is highly varied and each visit is a new experience. The area I cover is very large and I often travel over 100 miles each day.

I visit every patient given a diagnosis of a haematological malignancy within one week of diagnosis. This is important as patients are not only unable to recall much of what was said after the diagnosis and also because patients may experience a crisis situation.

The visit enables me to reiterate the information given regarding diagnosis, treatment and potential side-effects. Also, it allows me time in the patient?s home environment to assess the impact of illness on both the patient and their carer?s ability to function. Trusting relationships can be developed at this stage.

Every patient undergoing chemotherapy as outpatients is visited one day before to obtain blood. This allows us to assess the patient?s suitability to receive chemotherapy and also reduces their hospital attendance. It also helps ensure the efficiency of the day unit and chemotherapy manufacturing service.

The same patients are visited 10 days post-chemotherapy to obtain blood to assess their neutropenic status. This visit gives me an opportunity to reiterate the need to report symptoms of infection and allows patients and their carers to talk about their concerns away from the hospital environment.

Many patients with haematological malignancies can become blood transfusion dependent, therefore I visit these patients every 2-3 weeks to obtain blood to assess the need for transfusion.

Several patients require the insertion of a Hickman line to provide venous access. For these lines to remain patent it is necessary to flush it weekly. I therefore visit these patients to flush their lines at home, reducing hospital attendances.

Improving end-of-life care

In 2000 The Cancer Plan stated 'that cancer patients should be able to live and die in the place of their choice wherever possible?.

Prior to the development of this role patients requiring frequent platelet transfusions at the end stage of their life had little choice but to die in hospital. In response to patients? needs, and in line with the Cancer Plan, I now administer platelet transfusions at home.

This innovation has not only allowed early discharge for the terminally ill but has also allowed patients to choose where they die and for their families to care for them.

I contact bereaved families approximately 10 days after patient death and visit where appropriate. Some families do not want to be visited as they find meeting with personnel who cared for their loved one too hurtful, but the majority welcome a visit and having the opportunity to talk.

Positive outcomes

I work as an autonomous practitioner and as such have been able to develop and expand the role.

Visiting patients in their homes enables them to discuss issues they would not raise at the clinic. I can provide reassurance and facilitate holistic care.

Over the three years since the start of the role I believe I have helped people and their families adapt to their diagnosis. This has allowed them to make informed decisions about their treatment and their future, empowering them to take back control over their lives.

Patients and carers have better understanding of the illness and its prognosis, which can facilitate open and honest discussions about personal, financial and legal matters.

Before the role began, patients undergoing intensive chemotherapy and bone marrow transplantation had little choice but to say in hospital until they had fully haematopoietic recovery.

This role has facilitated early discharge from hospital and greatly reduced the number of visits a patient needs to make to the clinic. On average patients are now discharged 2-3 days earlier this has had an immense psychological impact for the patients and their families, many of whom have small children. It has also improved patients choice, facilitated recovery and improved quality of life.

Improved education about the importance of neutropenic sepsis, safe diet and caring for Hickman lines has increased patient safety and empowered individuals to participate fully in their care.

GPs, Macmillan nurses and district nurses have welcomed the role. Close working relationships with these healthcare professionals as well as social workers and benefits advisors have been established, which helps deliver holistic patient-centred care.

This role was initially developed to provide psychological support for patients and their families from diagnosis and throughout their cancer journey, but it has developed to incorporate many aspects of patient medical and psychological care.

Service development

The key areas of service development are:

  • Certain chemotherapies/treatments can be given at home. Developing this would improve the quality of life of patients, reduce the workload of hospital staffs and release valuable bed space.
  • Further evaluation of the role is required
  • There is a need for further education for community staff
  • There is a need to expand the follow-up service (currently limited because of time constraints)
  • There is need to expand the bereavement service, especially for young families with children.

Barbara Christie, haematology outreach nurse specialist barbara.christie@stees.nhs.uk

The James Cook University Hospital, Middlesbrough.

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