Acute Oncology Service (AOS) in NHS Scotland: principles

4. Patient and Carer Considerations

Co-ordinated, well integrated, fully resourced specialist AOSs bring about significant benefits for patients by establishing the most clinically appropriate care pathway and providing more timely access to the right treatment, in the right place, first time. Patients, carers, and families experience is also improved overall by the specialist AOS providing advice, prompt communication and support. Differences in service provision lead to very different experiences and outcomes:

Patient journey and carer experience in a site without a specialist AOS in place:

Case Study 1 – 83 year old female with metastatic breast cancer had been declining over a number of weeks at home. Family were supporting at home, providing increasing amounts of care themselves, due to staffing shortages in community care. A family member repeatedly contacted outpatient oncology and primary care and was advised to wait for an updated CT scan and not to present to hospital. Following weeks of distress and worry, the lady was brought by the family member to the emergency department, the patient was unwell and in pain. She had a protracted stay in the medical assessment unit where she developed delirium, which was exacerbated by the noisy, overcrowded environment. Restaging confirmed significant disease progression. Oncology (remotely) recommended treatment of bony metastases with either prophylactic pinning or radiotherapy, advising of a life expectancy of 6-12 months. Following face to face assessment of the patient by Palliative Care and she was transferred to a hospice for end of life care.

Carer Experience

• Palliative care were visible, I felt let down and disappointed by the lack of visibility of Oncology.
• I recognise that having the CT performed earlier would not have changed the outcome but it would have changed the journey.
• I knew myself … I had seen the change … I wasn’t listened to. There was a failure in the whole system. It was traumatic for us as a family.
• The whole experience was overwhelming and horrendous.

Involvement of dedicated specialist services on site would have altered the clinical advice, made lines of communication with the family clearer, and provided a more supportive environment.

Patient journeys in a site with a specialist AOS in place:

Case Study 2 – 49 year old male with locally advanced pancreatic cancer was admitted within hours of first Folfirinox chemotherapy to the acute hospital site. He had been given oral cyclizine in IAU with no benefit, dexamethasone had not been administered as per chemocare. He was seen by trainee ANP who advised once only subcutaneous levomepromazine 2.5mg, commenced dexamethasone 4mg BD as per chemocare and gave the patient further advice on maximising his anti-emetics. He was discharged later that day and avoided a ward admission.

Case Study 3 – 51 year old female with a background of metastatic breast cancer with bone and liver metastasis, was on 6^th line treatment with weekly Paclitaxel. Patient phoned the national treatment helpline and was referred to the acute site with abdominal pain, dysuria and malaise. She was treated for a suspected UTI with antibiotics and picked up for review by AOS via notification of cancer treatment helpline referral. Patient was reviewed by AOS trainee ANP and found to have a 2 day history of dribbling incontinence and also lower limb weakness on examination. Recommended to have a bladder scan and MRI full spine. Imaging revealed extensive sacral metastasis causing nerve root compression, the patient then went on to received 20Gy #5 radiotherapy. She remained mobile and is continuing with further palliative SACT.

Patient journeys in a cancer centre with a dedicated cancer treatment helpline (CTH):

Case Study 4 – 35 year old female with recurrent squamous cell carcinoma of oral cavity being treated with palliative immunotherapy and chemotherapy called the helpline after feeling unwell at home. She was assessed over the phone by a helpline nurse and triaged for review at the Acute Oncology Assessment Unit (AOAU) within the Cancer Centre. Presented at AOAU with NEWS> 5, hypotensive, tachycardic, blood loss from wound, oxygen saturation <94%. She had recently been treated with Doxycycline for a chest infection by the GP. ANP reviewed her - Potential Differentials: neutropenic sepsis, chest sepsis, symptomatic anaemia. Sepsis six was implemented immediately by ANP - IV access, required bloods, oxygen therapy, IV antibiotics prescribed and fluids challenges given. Antibiotics were administered within 20 mins, admitted to ward as neutrophils 0.1 with WCC and CRP rise. Patient was discharged home to her partner and young children within the week.