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My Name Is NOT Cancer

Nursing Sister in Palliative Care Outpatients Unit

I work as a sister in the outpatients and daycare unit of our local hospice.
I`ve always appreciated the principles of palliative care ever since my mum attended the hospice as a day patient in the early 80’s! She had advanced breast cancer and was becoming more debilitated. Her pain and symptoms were managed so well and as a result her quality of life improved enormously. The time she spent at the hospice was invaluable. I had worked as a nurse on the busy medical and surgical wards of the local hospital and later worked a district nurse. I helped at the hospice a volunteer for a short while and later joined the inpatient team on nights, before starting in my present role two years ago.

My role is to help assess and co-ordinate the care of people attending the hospice as an outpatient, whether that is for medical assessment, physiotherapy, daycare, complementary therapy or psychological support.

I work as part of a multiprofessional team made up of doctors, nurses, physios, pastoral care workers, social workers and therapists. We provide holistic care, meaning that we address every area of life affected by advanced, or life limiting illness. Everyone is specialist trained, to deal with the impact serious illness can have on everyday life and relationships. We provide active, and supportive care, including care of those close to the person with the illness.
There`s a great opportunity in my role and within the outpatient services team, to help people maintain their independence, autonomy and control. We do this by assessing their needs and main concerns: highlighting what help and support is available and by providing the opportunity to access that help and support. We can inform and advise, but people have the choice whether to attend or not. We keep the person’s primary health care team fully informed of any interventions we initiate or recommend.

A hospice provides a pleasant, well equipped facility where people can access advice from specially trained staff on a drop-in basis (one day a week) or through the outpatient clinics and daycare. We provide advice on how to continue with gentle exercise, learning to relax and managing fatigue. Complementary therapy is available for patients and families to aid relaxation and a sense of well being. When people attend daycare we offer them the opportunity to express themselves, through artistic and creative activities, as well as providing a welcome distraction from their illness.
We work within the limits of people’s ability… but help them maximise their potential. We encourage people to set themselves realistic aims and goals, and help them achieve these, with the expertise and support available! People often lose their role in life when affected by serious illness, and there can be a loss of identity and self worth. It`s sometime necessary for people to adjust to the change in their circumstances, and accept that ‘the norm’ is different to what it used to be, but it can be maintained… so the illness isn’t all there is to talk about.

Whenever treatments are being offered, people are given a full explanation of the expected benefits and possible side effects! It`ll be explained how side effects can be managed, and people are given the opportunity to ask questions. I take time to build up the person’s confidence in our care and work at the person’s pace. For example, people are sometimes reluctant to attend daycare or are not sure about being away from home from 10-3pm, so we encourage a couple of hours to get used to it, then build up to a full day.
Those people who attend the hospice have a range of difficulties including the physical, psychological and social which affect aspects of their life. If a person’s mood is low, I spend time getting to know what their life was like before, and we talk about how they dealt with other difficult times in their life and then look at ways I can help them improve their mood.

Anyone who attends any of our outpatient services is still under the care of their GP. We liaise closely with primary care teams to inform them of what our intervention is, what support is available and what`s recommended following assessment of the person’s needs. If people are discharged from our care when their symptoms are stable and their lives are back on an even keel, our team ensure that the person and their primary care team is aware of how to access further support if required (e.g. 24 hour advice line). It may be that we continue to monitor then through the outpatient clinic.

I work as part of a multi-professional team within the hospice, as described earlier, working closely with: GP’s; District Nurses; Macmillan Nurses; Clinical Nurse Specialists; Oncologists; Pharmacists; out-of-hours services; Hospice at Home; Marie Curie nursing service; Speech and Language Therapists; Dieticians; Occupational Therapists and Social Workers. I also work with other local support groups such as Carer support groups; Red Cross; MNDA (Motor Neurone Disease Association) and Breast Care support groups.

I`m aware that some people are afraid to come to the hospice, and I`d like to see our advisory services go out to community centres and into groups who meet elsewhere, into groups who`d benefit from the information and support we can offer to those living with serious illness! I`d also like to have an interactive communication with people through media… such as the internet (? Facebook) through whatever channels people can access what they need, more easily.

We offer families and friends support, information, advice, relaxation and complementary therapies.  There`s a 24 hour advice line, so always someone available to help! We`re bound by confidentiality policies to not to disclose any information about people’s conditions to anyone without the person’s consent and wouldn`t collude with relatives or friends to withhold information from a person.

Our hospice service works to a set of standards set by the Assembly Government of Wales, for people living with cancer and other life limiting illnesses. We also adhere to the NICE Guidelines for Supportive and Palliative Care in adults.

I hope we continue evolving and expanding our services to meet the needs of individuals. It`s anticipated that with cancer treatments becoming more effective over time, that people will live for longer with certain types of cancer. However hospices are not resticted and also provide care for people with other life limiting conditions, such as motor neurone disease, end stage heart failure and end stage kidney failure.

By working closely with GP’s we ensure co-ordinated and seamless care. There`s always political arguments about who should provide and fund care, so a lot depends upon funding and who should be paying for what!

I`d like to dispel the fears people have about hospices, so those who could benefit from our support and services, are able to access them at the point of need.

I can only say… I love my work… and the differences I can make to people’s lives! We`re not necessarily able to change the outcome, but we can help individuals live their lives, with dignity, meaning and comfort, for as long as possible, and provide support and care for those close to them.

Best Wishes

Kay Ryan (BCUHB - Palliative Care)

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