Summary
The Macmillan Nurses employed by NHS Western Isles provide a unique service to people affected by cancer. The work they do is patient-focused and seamless. There is no hospital Macmillan team, no community Macmillan team. There is one Macmillan Nurse team providing care wherever that need is identified. Wherever possible the patient will be supported by the same nurse from diagnosis to the end of his or her need for care, with nurses overcoming the challenges set by the geography of the islands, the road conditions, the ferry crossings and weather conditions to care for their patients.
Challenge
The Western Isles is a group of islands off the northwest coast of Scotland. From the northern-most point of the Isle of Lewis to the southern-most point of the Isle of Vatersay is approximately 120 miles. The islands are linked by ferries and causeways, each providing challenges to the provision of local care to people affected by cancer. Most people live in remote, rural communities with few neighbours and little public transport. The proportion of the Western isles’ population over the age of 50 in 2005 was more than 40.6%. It is estimated that by 2024 there will have been an increase in the over-50s by up to 15.5%. On average there are about 200 new diagnoses of cancer each year within the Western Isles. It is estimated by ISD Scotland that there will be an increase in incidence of cancer in the Western Isles of 24.3% by 2023-27, with patients likely to be older and having several co-morbidities. People with a cancer diagnosis have their treatment managed by oncologists, haematologists and others in mainland cancer centres. This entails substantial amounts of travel for the patients at a time when they are often not feeling well.
Objectives
To develop, adapt and provide a seamless service for people affected by cancer whatever the need that is identified and wherever the person is, regardless of the massive challenges inherent in the geography and climate of the remote, rural location of the Western Isles. To devise local solutions to challenges wherever and whenever they are safe and sustainable.
Solution
Two members of the team are disease-specific Nurse Specialists for colorectal and stoma patients and for breast and lymphoedema patients. They support patients throughout the Western Isles even though they are based in Stornoway, Isle of Lewis. Most bowel surgery and all breast surgery is performed off-island, on the mainland in either Inverness or Glasgow. The speed of offering that support can necessitate travel between islands with little notice and can entail a night or more away from home. This part of their service cannot be planned: it is appropriately reactive to implement the care required and educate local generalist healthcare staff to carry on that care in their absence. Two Macmillan Nurses are based in the Isle of Benbecula, serving a population of approximately 6,000 people spread over several islands connected by causeways, bridges and ferries. Three Macmillan Nurses are based in Stornoway, Isle of Lewis, serving a population of approximately 20,500 people spread over one large land mass and smaller islands linked by bridges. These Macmillan Nurses provide a generic cancer support service for anyone with a cancer diagnosis other than breast or colorectal. They are also recognised as the local palliative care experts for any cancer patient but also provide advice and support for people dying from other conditions.
Results
The Macmillan Nurses’ work often takes the fear of cancer away from patients and their families and minimises it for others. They work hard to facilitate patients’ wishes, particularly in palliative and end of life care. They will present strong arguments to social care colleagues to have care packages in place to allow death at home if that is wished by the patient. They work collaboratively with local GPs and Community Nurses to control distressing symptoms and prevent avoidable and unwanted hospital admissions.
Learnings
In many respects the work carried out by the Macmillan Nurses across the Western Isles is unique and cannot be replicated. This is purely related to the unique geography, challenging weather conditions and its remoteness, with people’s homes being remote even within this remote location. However, their philosophy can be replicated: the service is for the patients and their families and has paramount importance. The lack of a division between hospital and community care prevents any patient ‘slipping through the net’ as the same team provides care wherever the patient may be. Using strong advocacy skills to speak up for their patients to improve their cancer experience can be replicated.Evaluation
The Macmillan Nurses of the Western Isles are held in high esteem by their colleagues in healthcare and in social care, their patients, their patients’ families and the general public. They are part of this local community and are respectful of the local culture and traditions. This is reflected in their work with patients and their families and which is frequently commented upon positively in the local media.
