The value of holistic assessment and rapid intervention: The Newcastle Lung Cancer Outpatient Occupational Therapy Service (LCOOTS)

Tuesday, October 5, 2021

Respiratory Futures spoke to Jenny Welford, Specialist Occupational Therapist at the Newcastle upon Tyne Hospitals NHS Foundation Trust and lead of this service.

How did it the service begin?

Our Trust has been part of NHS Elect’s Specialised Clinical Frailty Network since 2018, as part of the network, we assessed the frailty of patients with a diagnosis of lung cancer using the Rockwood Clinical Frailty Scale. We have collected almost 700 frailty scores from this patient group, which has been helpful in treatment decision-making and ensuring they receive the right care at the right time, particularly if their frailty status is changing.

The frailty project highlighted how patients with lung cancer experience high levels of fatigue, breathlessness and functional disruption, and gave us data to support the business case we presented to the Trust charity. We were successful and obtained funds for a one-year pilot to setup the Lung Cancer Outpatient Occupational Therapy Service (LCOOTS), which will run from April 2021 – April 2022.

Was there an unmet need that inspired this service?

Our region presents with high rates of lung cancer due to socioeconomic deprivation, higher than average rates of smoking and industry. Complex social issues can and often do present alongside a diagnosis of lung cancer and managing these in addition to what can often be a relatively short prognosis requires truly holistic care.

Prior to the funding of LCOOTS, a proportion of this patient group would present in clinic with a myriad of problems including fatigue, breathlessness, reduced independence impacting upon activities of daily living, reduced mobility leading to unsteadiness or falls, anxiety or low mood. Typically they would be referred to their district nursing team, who would then refer on to a community therapy team, which can take a significant amount of time. Alternatively they would be admitted to a ward in the Trust if their ability to remain safe at home was compromised.

We knew that many of these needs could be addressed by occupational therapy in a far timelier manner, reducing admissions for social reasons and length of stay, as well as increasing quality of life. We also knew that an occupational therapist could thoroughly assess and monitor frailty over a period of time and initiate a greater number of future planning conversations.

Who is in the team?

At present our team consists of a full-time specialist occupational therapist and one day of support per week from Kirstyn Borrowdale, our occupational therapy technical instructor. Kirstyn’s skills in non-pharmacological symptom management and creative problem-solving have been of great benefit to the patients.

Our daily work includes attending respiratory and oncology clinics, carrying out face-to-face and telephone assessments and reviews, visiting our patients and their families in the community and providing a wide range of intervention.

Who is LCOOTS for, and what service does it provide?

LCOOTS is for any patient with a diagnosis of lung cancer who presents with a functional need, a wish to engage in future planning, problems with symptom management or psychological adjustment to their disease. Any member of the multidisciplinary team can refer into the service and our most common referrers are the lung cancer clinical nurse specialists, oncologists, respiratory physicians and cancer care coordinators.

Assessment and onward referral:

We strive to provide timely, holistic assessment and intervention to patients with lung cancer.

A significant number of patients have required onward referral (69 referrals to date) to a variety of services such as Macmillan Welfare Rights, community palliative care teams and wheelchair services to name but a few. In addition, we have prescribed equipment on a further 69 occasions, which demonstrates the level of functional disruption faced by patients living with lung cancer. Patients told us that this increases their independence at home and can help with symptom management, particularly fatigue and breathlessness management.

Patient information and education:

We have made it our goal to provide education to patients and their families on how to manage fatigue and breathlessness in the community and moving forward, I will be using CBT techniques to support patients experiencing panic, anxiety and low mood linked to their breathlessness. Quite often these are symptoms patients have to adapt to live with and upskilling them in self-management is of the utmost importance. Resources are provided in clinic or posted out to support these symptom management conversations.

End of life care:

I frequently lead future planning conversations and have completed a number of advance statements of wishes. These documents are then disseminated to the patient’s GP, district nurse, and consultant, as well as uploaded to their electronic medical notes. They communicate what/who is important to the patient and their preferences for end of life care, including preferred places of care and death. For me personally, this has been the most fulfilling aspect of my new role. It has been a privilege to provide a safe space for those we care for to have the confidence to talk openly, with support about their wishes.

Is LCOOTS integrated with other services?

Occupational therapy is now a core part of the lung cancer multidisciplinary team and the service is embedded within the respiratory and oncology teams. I have also been able to strengthen links with various teams in the community including loan equipment services, Newcastle’s palliative care team, our Community Response and Rehabilitation Team among others. Communication between LCOOTS and the community has been commended in informal feedback and we hope to collect this formally moving forward to further demonstrate good integration.

What has the service achieved so far?

Thus far we have delivered 429 interventions to 84 patients over a six-month period. We have avoided 14 admissions to hospital, and there have been no admissions for social reasons for any of these patients. In the event of admission for a medical issue, none of the patients known to LCOOTS have experienced a delayed discharge for social reasons. We have increased the amount of timely future planning conversations by 31% and we are hopeful that this will increase the number of patients achieving their preferred places of care and death.

During the first half of this project, we have recorded 385 patient contacts, inclusive of face-to-face and remote assessments and reviews. Patients have found accessing the service remotely helpful, as it has reduced the amount of time they have to spend in the hospital and has alleviated anxieties around COVID-19.

Within the last six months we have found that this patient group has a high level of physical, social and emotional need and we have collected evidence demonstrating that occupational therapy intervention can meet those needs.

Did you receive any feedback?

Anonymous feedback from patients via our Patient Experience team has been very positive. LCOOTS offers assessment and intervention at any point in the lung cancer pathway and we quite often carry out these assessments at the point of diagnosis when investigations are still ongoing. This is often a busy and stressful time, however patients state that our involvement does not increase burden or stress in any way. 100% of patients ‘strongly agreed’ that their initial assessment was in depth and covered all aspects of their function. Patients reported feeling informed and involved in deciding what support they needed, and felt more confident at home as a result of using the service.

We have also received positive feedback from the multidisciplinary team, which highlights that there would be a number of risks of not having the service, including patients not coping at home, poorer patient experience, difficulty accessing rapid support for functional disruption and increased admissions or presentations to the emergency department.

I am very pleased with the data up to this point and I have submitted a number of abstracts including to the Society of International Geriatric Oncology and British Thoracic Oncology Group. I have also been fortunate enough to be involved in writing a book chapter (in publication) on the importance of physical performance and function in cancer, soon to be published, and have presented our wider frailty work at the European Society of Medical Oncology annual congress.

What do you see as the future of the service?

We hope to secure permanent funding via the Trust and seek to expand this model across other tumour groups in the near future. It would also be beneficial to develop a decision support clinic with occupational therapy, physiotherapy, oncology, palliative care and clinical nurse specialists for patients who are borderline fit for treatment in order to reach the best possible decision in line with their wishes. My vision is for all outpatients facing a diagnosis of cancer to have access to high quality occupational therapy nationally in order to promote quality of life.