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Role of the community Macmillan Nurse

Get an insight by reading this blog by NEAS Macmillan nurse and end of life care facilitator Sarah Turnbull to understand her day to day role in working with patients and their families.

My role as a Macmillan nurse involves seeing patients face to face in their homes following a referral from a health care professional.  People are referred to me for multiple reasons from symptom management, psychological and emotional support, to support with end of life care.

Not all patients will have a Macmillan nurse as they are only involved if a patient has any complex symptoms or problems. Every local community will have a community Macmillan palliative care team and district nurses and GPs will have their contact details.

Day to day life

In my role it is important that we plan for a good death as the dying process is what the families remember. I remember my father’s death like it was yesterday and this is reflected in my work by ensuring that the patient has everything they need and that the family know what they need to do. Making a difference to patients and their families including organising a piece of equipment, helping with finances, prescribing medication or listening and sharing someone’s fears, is the most rewarding part of my job. 

It can be challenging for me in dealing with death or dying on a regular basis, but I see my role as part of a team and there is always someone to discuss issues or problems with.  It can be very difficult to talk about these highly emotive subjects with patients and their relatives but in my opinion, the conversation of death is vital if the patient is nearing death. 

Throughout my experience, it comes as a huge relief to the patient and their relative that someone has finally spoken about it. From then on the planning can then begin.  We only have one chance to get it right for a patient so we have to ensure we do just that.

I began my palliative nursing career in a hospice and they provided excellent training and educational support throughout my employment. They also supported me through my degree in palliative care and supplied regular clinical supervision sessions, which gave me the opportunity to discuss situations that were difficult or challenging for me.  I then joined the NHS who also supported me with regular training opportunities and allowed me to access regular clinical and prescribing supervision.

Meeting patients for the first time

When working with each patient, I complete an assessment to help me make decisions on delivering the right care for each patient. For example if a patient informs me they have been told no further treatment is possible and they have been discharged from their oncologist, it can provide me with an opportunity to explore future planning with a patient and their relative.  This includes:

-          Information about any physical problems

-          Symptoms

-          Psychological and emotional wellbeing assessment

-          Medical history

-          Information about their current diagnosis

-          Social situation

-          Housing

-          Details of their support network

-          Employment

-          Finances

-          Benefit entitlement

-          Medicaiton

Assessing medication that a patient takes is extremely important as I often prescribe medication for patients as I am an advanced non-medical prescriber. I need to ensure I am aware of any allergies a patient may have and what current medications they are on so I don’t duplicate any prescriptions.  Depending on the reason why a patient has been referred and how they are on that day affects how often I visit a patient.  If they were in extreme pain and I prescribed some medication to help alleviate the pain, I would visit patients again after a few days to re-assess them. 

Often a patient may require support from another service including referring them to occupational therapy. An example of this is when a patient needs equipment to help them get in and out of the bath. Another example is if a patient requires advice and support with finances, benefits or grants then I would refer them onto an appropriate financial advisor.

Support delivered to patients and their families and friends

When I worked full time as a community Macmillan nurse I looked after approximately 25 patients.  In my current role where I work clinically one day a week I have four or five patients that I work closely with. When working with patients I offer:

-          Pain and symptom management

-          Advice and support

-          Medication prescribing support

-          Emotional and psychological support

-          Financial support

-          Social support

-          Support with signposting

-          Referring onto other services

-          Support and advice with end of life care planning

-          Support for relatives and friends of the patient

-          Support to other health care professionals

It is extremely important for palliative patients to have a plan for the end of their life which informs everyone about what the patient’s choices, preferences and wishes are.  It places patients at the centre of the decision making process and involves them in what is happening in every aspect of their care including their deterioration and death.  If we do not know what patient wants, we cannot deliver upon their wishes and needs.

I support patient’s friends and families by listening to them and answer their questions, queries and concerns.  Ensuring they are included in decision making is very important as well as supporting them emotionally by asking how they are and if they need any extra support. Just being asked is a way of helping. Having a Macmillan nurse visit on a regular basis brings a sense of support and comfort to the relatives – so they tell me!

Providing explanations about symptoms and medication for example, provides a lot of support to people as they want to know what is going to happen to their loved one and what help and support they have. Having an idea of what they will be facing can provide some comfort and honesty is also important from myself and other professionals in ensuring relatives are informed and kept up to date with their loved one’s care.

Challenging parts of the job

The heavy emotive discussions can be challenging and difficult, but if done well it can be very rewarding for a patient, their relatives and myself. Not being able to get what you want or need for a patient to stay at home can also be a challenge as it is not always easy to organise this and can lead to patients being admitted into hospital at the end of their life, which is usually not want they want.  I sometimes also find it difficult caring for patients who struggle to accept that they are dying as you are often unable to plan ahead as a patient refuses to discuss it. This can lead to crisis planning which can be very stressful for the patient, family and health care professionals involved.

Rewarding parts of the job

Fulfilling last wishes makes a huge difference to a patient and their family.  I have witnessed parties and a couple of weddings and for one patient we brought Christmas forward.  Some want to go home one last time and some want to see their animals again.

The one wish we strive for is ensuring they die in their chosen setting so that is why we need to talk about death and dying and plan for it.

Most patients want to die at home yet still patients continue to die in hospitals.  Sometimes patients can deteriorate quickly which can be unplanned, but most patients follow a pattern of deterioration which allows for end of life planning and this is something that as health care professionals, we need to get better at.


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