Last Friday 7 May, Charlotte Rider noted down what happened during her working day as a Clinical Nurse Specialist in the PICS Palliative Care team. Between 8am and 6pm, she visited four patients and their families at home, telephoned two patients, called one bereaved family and stopped by a post box to send a condolence card with a sachet of forgot-me-not flower seeds to another bereaved family. She directly liaised with Hospice staff, care home staff, district and community nurses, ambulance staff and a benefit advisor. Charlotte’s updates to shared patient record systems also updated over 50 health and social care staff across Nottinghamshire, including GPs and Social Workers.
Some of her visits are scheduled with patients in advance, and some are raised the night before or that morning. They can call up for support or a partner in the patient’s care can book it in as urgent. Every day is different, driving all over the county and seeing new patients and familiar faces…
First thing, while having my coffee, I logged on to check for alerts and any tasks assigned to me by the team. I picked up the phone to answer a patient who had questions about their appointment at a hospice outpatient clinic later that day. I was able to provide them with emotional support during our chat and was confident they’d go.
Just after 9am, I drove over to the home of one of my patients whose condition was deteriorating. I reviewed how they were managing their symptoms, talked with them and their carer about how they were feeling and I listened to what they wanted. They decided to go into end of life care at a hospice, so I made some calls to arrange for a bed with on-call Specialist palliative care medical team, and I also ordered an ambulance to help them get there. I treated the patient with some personal care and mouth care, and I helped them pack up their medications, checking they had their ReSPECT and Anticipatory Medicine drug chart. The patient had already communicated their wishes for their care using the ReSPECT document, so it was really important to take it so that their new carers would understand their wishes and needs quickly.
A community nurse arrived and I supported them to renew the syringe driver. This enables medications to be delivered continuously for patients who are unable to swallow medications. While I waited for the ambulance to arrive, I updated the patient’s record so their other carers were kept up-to-date.
What is ReSPECT?
11.30am: Before setting off I had a call with another patient who was suffering from nausea. A likely cause of this was a drop in haemoglobin levels, so we discussed what we’d do if they needed another blood transfusion. They decided they’d want to go to a hospice instead of a hospital, so I updated their records. I also made a note to discuss it at the next multi-disciplinary team meeting and then I called their District Nurse who visits every day so they knew. I completed a benefit form which would give them a higher payment and forwarded this to the Department of Works and Pensions.
11.40am: I called a care home for an update on a patient’s condition. The Patient wanted to discharge home and staff were confident that the patient demonstrated mental capacity to make this decision. The patient had a ReSPECT plan. We agreed that I’d make a home visit as soon as they were home and I also clarified specific prescribing for them.
Before lunch, I drove to visit another patient who had just come home from hospital. We had a chat and I did a holistic assessment of their situation at home. The patient and I reviewed their medication and pain symptoms together, and I gave them advice on how to control their pain levels. I updated their ReSPECT form to reflect their wishes that they wanted to stay at home now. I checked their prescriptions and made a change to increase their required morphine dosage to reflect their slow release morphine prescription.
I also took time with their carer to give them support, and we talked about a local night sitting service which would help them get some rest. I checked their entitlement to support with costs, and I made sure they were getting attendance allowance. I left forms because the patient wanted to complete them. I let them know that they could get support from the End of Life Alliance Clinical Navigator Service, which would help them arrange additional benefit advice and support. I wrote some prescriptions for supplements and oral gel before I left, to ease some of the side effects.
13.50: After checking with the shared NHS IT system, I went on another home visit with a patient to review their pain symptoms. I made some adjustments and re-prescribed medications. The carer was unhappy as they were struggling to get through to their local practice for more drugs in advance of the weekend, so I’m glad I was able to sort this out for them. The patient and their carer were really struggling to come to terms with the prognosis, so we talked and I gave psychological support. I offered them further support from our medical team and booked it in, alongside a call from me a few days later. I used the IT system to give a task to the District Nurse to update on alterations to syringe driver doses I’d made on prescriptions.
14.30: A District Nurse had made an urgent call to me earlier, asking me to visit a patient discharged from hospital the previous night. They had been this morning but it was a complex case with psychological, social and safeguarding concerns. The patient had an unstable condition and was potentially in their last days or weeks of life. I went over to visit them. I reviewed their symptoms and medications and made some updates.
I listened to what they were concerned about. They shared with me what they wanted to happen after their death. I got consent from them to contact their niece as next of kin and share this with them. I arranged for night sitting to support the carer and provide consistent care for the patient throughout their day and night. We discussed what to expect. We checked their ReSPECT was up-to-date with their wishes, and ensured their drug chart was accurate. The District Nurse was booked for a daily visit to check medications.
After 3pm, I drove home to finish my admin work and check my plan for tomorrow. On the way I stopped to post a hand written condolence card to the family of a patient who had died. It had additional bereavement signposting support information included, and we also put in flower seeds of forget-me-nots to offer a personal touch.
At 6pm I called a family whose loved one had died a few weeks previously as part of bereavement follow-up. No complex grief was identified on my support telephone call. The family had already received signposting onto additional bereavement support and counselling with condolence card I send out at time of death. I updated the notes and discharged them.
Then I was finished for the weekend.