As one of the St Richard’s Hospice Nurse Specialist team I have around 30 patients on my caseload at any one time whom I see mainly in their own homes.
There is no ‘average week.’ Patients and all affected by their journey in ill health have changing needs so hour by hour my priorities may change, resulting in both a responsive and flexible approach to my working day.
I usually make five or six visits a day to see patients but there needs to be flexibility on both sides. If I need to spend more time with one patient who has complex issues, then we let other patients know their appointments need to change slightly. But patients and families are all very considerate and understand that we put the patients’ needs first, and another day it may be them who takes priority.
We are fortunate that we have electronic access to a patient’s records so we are completely up to date with their results, blood tests and treatment plans.
The first time I see a patient I very much follow their lead. They decide what they want and how much support they need. Initially it may be they would just like a regular phone call to find out how they are, but for most patients we have a weekly visit lasting about an hour.
Very often patients are amazed at how much support we can give them. We can see a huge sense of relief as they realise they can stay at home if they wish to and there is support available to make that possible.
We offer different support than other medical professionals in that Nurse Specialists have expert clinical knowledge in complex symptom control and we feel comfortable having very difficult discussions with patients about living and dying. We work with many other health professionals and put the patient and the whole family as the focus of all we do.
For example, as well as physical pain, a patient may be in psychological distress caused by anxiety about losing their job and not being able to pay bills or leaving a young family behind. This can have a huge impact on their overall wellbeing. We listen and aim to address their anxieties. For example we can arrange for a patient to see our Citizen’s advice worker who can help with claiming benefits. We can put the family or carers in touch with our Family Support Team who offer pre and post bereavement care. I will also talk daily with other health professionals involved in caring for a patient such as their oncologist, GP, district nurse or hospital nurse.
We also go the extra mile – for example I recently arranged for a Trust to pay for a a patient of mine and his young family to go on holiday. The father was very ill, had lost his job and they had been through a tough time. This will be potentially a last holiday together, creating special memories.
A wonderful relationship evolves with patients and families when they feel safe and protected being supported by St Richard’s. I sometimes have a little cry with families as I do feel their pain. I am one of 14 of us in the Nurse Specialist team and we all support each other as well as being supported by our team leader and others in the organisation. I’m very fortunate that I also have a loving husband and children who understand my role.
We are available 24 hours a day as patients or their carers can call for advice and there is always an expert and caring voice at the end of the phone. I take my turn with the rest of the team and am on call about three times a month. It’s a comfort to me as well as the patient as I would rather know they can speak to one of us than be awake all night worrying or in pain.
Patients are also reassured that when they reach the end of life we are not just going to walk away from their loved ones. They will have had the opportunity to unpick any concerns, talk to our chaplains about spiritual matters whether they have faith or not, and with our family support team before and after death into bereavement. We talk about planning for the future, preparing for any eventuality and creating a safety net to enable them to stay at home.
I have worked for 14 years in intensive care, 11 years district nursing and in the hospice environment for the last nine years. I believe we are very fortunate in Worcestershire as if someone wishes to die at home then there is the support to do so. Working with the health authority, the district nurse, GP and our Hospice at Home team – who can offer short term packages of 24 hour care – there is huge support. It is only if a patient has very complex symptoms which need to be addressed that they may need to be admitted to the St Richard’s In-patient Unit or the acute hospital, whichever is the most appropriate.
I see the majority of patients for between sixth months and a year and I feel very privileged to be beside them on their journey.
Gayle Webster, St Richard’s Nurse Specialist.