What I Do: A Day in the Life of the Operational Lead for Long Term Conditions

Carolyn Doyle has over 20 years of experience in end of life care. She takes us through a day in the life of a Clinical Nurse Specialist and shows us how to provide exceptional care for patients at end of life.

Although I am now responsible for a number of long term conditions since our recent adult services consultation, I have worked primarily in palliative and end of life care for over 20 years. I have seen changes to practice, and then those changes reviewed and changed again. For example the issues around the Liverpool Care Pathway, a tool to support consistency in care for all those in the last days of life. Like all tools it is only ever as effective as the people using it and the key to it being used appropriately has to be good robust education.

Change, we know, is a constant within the NHS and something we have all accepted as part and parcel of our working lives.

I came into my current role initially as an educationalist, to support the workforce to provide high quality evidenced based end of life care. However, as everything in the NHS, my role has developed and changed into a more managerial role, but for me education sits at the heart of everything we do. I believe every experience is a learning experience and should be embraced as such.

Within NELFTs Specialist Palliative and End of Life care services in Essex, we have developed our student’s placements, from 1 day taster days to 4–6 weeks clinical placements. This is a wonderful opportunity for the students, but equally so for all the team members as it keeps them current and focused.

Today I have a student with me; I am covering for one of our Clinical Nurse Specialists and going to visit a lady with cancer at home to discuss what her wishes are for her end of life.

My role has diversified so much that I rarely get an opportunity for direct patient and family contact, so I use these opportunities to revisit and rekindle my passion for giving the best care at end of life.

Our visit is at 10am, so I have an hour before we have to leave the office. It’s this early part of the day that I usually get a few minutes to check in with my staff and ensure they are all well. The emotional burden of working with people who are approaching the end of their lives is well documented and part of my role is to ensure the well-being of my staff. One of my Clinical Nurse Specialists is obviously upset by the death of a patient that occurred the previous day. I settle the student with the patient record so she knows the patient’s story before our visit, and then ask the CNS to join me to reflect on her previous day. Supporting my staff to make sense of the distress and anguish they witness is a key leadership component of my daily work load and today is no exception. I often don’t say much at all but just be alongside my staff whilst they offload and reflect.

The student and I arrived at the house of the lady we are visiting, she is a lady in her seventies with a close family, and her two sons are with her today as they have lots of questions to ask. The student discloses that she had met this lady whilst on placement in the local general hospital. The lady remembered the student and took great pleasure at seeing her again.

We discussed the wishes that the lady had made in respect of her end of life care, she wants to stay at home, but doesn’t want to be a burden on her family.

We suggested that a statement of wishes document may assist her in achieving her wishes; she thought this to be helpful and we supported her to complete. The wishes in this document are then shared with other professionals including our out of hours colleagues, I explain that if she calls out a GP or other professional they will be aware that she wants to die at home and will try to facilitate this happening. One of the lady’s sons become quite anxious when discussing his mum dying, but expressed that this was really the first time they had all been honest with each other. As difficult as it was he felt that it was good to have this precious time where they as a family could discuss and plan for the future.

Travelling back to the office with the student, gave me an opportunity to see how she is feeling; the student explains to me how difficult it felt to see the lady in her own home surrounded by her own things. In the hospital she was a patient in a hospital gown, in a clinical setting, there the discussions around death had seemed distant. But seeing her at home somehow made it so real, the student felt she could almost see the gap the lady would leave in her family home and in her children lives.

We arrived back at base at lunch time.

In the afternoon I attended a GSF (Gold Standards Framework) meeting at a GP practice to discuss patients who were considered to be in the last 12 months of life. The GP wanted to discuss the appropriateness of completing a ‘do not resuscitate’ order for a patient and needed some advice and support in relation to the conversation he needed to have with the patient and their family. Another GP in the practice wanted to discuss a patient that we had requested a DS1500 for, so the person can access state benefit to support the extra costs of living with a life-limiting illness.

We discussed six other patients, all with their individual needs and concerns. I then returned to base.

At base, one of the specialist occupational therapists meets me to discuss organising a stair lift for a patient who cannot afford to pay for this himself nor does his disease give him the luxury of waiting for a social care assessment. We agree that applying to Macmillan Cancer support for a grant may be a solution and the therapist arranges a meeting with the patient to complete the form.

I touch base with the admin staff I manage from across the long term condition services during the day, to ensure all the services are running smoothly and to follow up on any issues that may have presented themselves.

Today has been an interesting day; I’ve had the privilege of sharing the morning with a student, who actually gave me food for thought around how the location of the patient dramatically affects how professionals may see them, I’ve been able to help my colleagues in primary care to support our patients at end of life, but equally important is that I had the time to listen to my staff member and support her following the difficult death of a patient, and she will continue to be well enough to carry on her job — so tomorrow will be business as usual.

Carolyn Doyle, Operational Lead for Long Term Conditions

Carolyn Doyle is a registered nurse with over 30 years’ experience and has worked in palliative and end of life care for the last 16.

She joined NELFT in 2010 as the End of Life care lead initially to set up team, but went on to be the Lead Nurse for End of Life Care for NELFT in Essex.

Carolyn has recently taken on the challenge and extended her portfolio to include all of long- term conditions. Prior to joining NELFT, Carolyn was a Macmillan team leader and Macmillan Clinical nurse specialist in Southend-on-Sea. She is a qualified District Nurse and has a post graduate certificate in education, as well as also being a member of the Royal College of Nursing Pain and Palliative Care Forum steering committee.

Carolyn’s passion for nursing has driven forward varied local and national initiatives including contributing to the RCN end of life care resource One Chance to Get it Right (RCN 2015), and leading on the East of England ABC education project in Essex.

She has spoken at national events, including giving evidence at the House of Commons Health Select committee enquiry into end of life care.

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