Published on 30 March 2023
Ensuring all newly diagnosed brain cancer patients across Cheshire and Merseyside receive a new higher standard of care
By Harry Blunt, Project Officer, Cheshire and Merseyside Cancer Alliance
March is a significant month for the brain cancer community – raising awareness of a disease which, despite being the biggest cancer killer of those aged under 40, has only received 1% of all UK cancer research spending since records began.
But Brain Tumour Awareness Month has also been a busy month for Cheshire and Merseyside Cancer Alliance (CMCA) and clinicians across our sub-region supporting innovative transformation of NHS services which will benefit those who are unexpectedly diagnosed with brain tumours in Accident and Emergency (A&E).
This article outlines the what, why, and how of this transformation and the positive impact this has on patients diagnosed with brain tumours in A&E.
To begin, I’d argue that the brain is the most important part of our body. It controls how we move, how we communicate and the emotions we feel every day. Simply put, it makes us who we are, and is one the reasons why we are all so different as a human race.
A neurological disease, in some cases, fundamentally changes who we are, how we feel and our ability to be ourselves. This is no truer than when it comes to brain tumours, which can have a progressively debilitating impact on those it affects.
Primary brain tumours account for just 3% of all cancers diagnosed in the UK each year and affect approximately 0.019% of the population.
We know it is rare and the cause of the disease is not entirely clear. We also know that for most brain tumours, there is no cure. We also know that for patients living with cancer, this can sometimes spread to the brain, known as brain metastases.
Diagnosis can often lead to patients having a sense of fear and loss of control and feel uncertainty about what the future could hold. Fatigue, emotional outbursts, memory loss and loss of mobility are just some of the symptoms that can worsen as the malignant disease progresses, having a severe impact on not just the patient, but also their families and carers.
Early symptoms are vague and difficult to diagnose in primary care, with approximately 1% of brain tumour diagnosed following an urgent cancer referral from primary care. In fact, over half of all brain tumours are diagnosed in A&E.
The rise of ‘corridor care’ and extensive waits in hospital emergency departments can lead to poor patient experience. They can be left in limbo, with little information as to what happens next and can sometimes be sent home with the simple message that “someone will be in touch”.
Who will be in touch? When? By what means? What do I do in-between? When can I start treatment? These are the possible concerns that patients and their carers can have, and some may be left to navigate a complicated health and care system, seemingly alone. Complex needs, not just physically but also emotionally and cognitively, leads to complex care from all levels of the health and care system.
In Cheshire and Merseyside, formal diagnosis of a brain tumour is given following discussion with a Specialist Multi-Disciplinary Team (SMDT) at our sub-region’s neuro-oncology specialist hospital, The Walton Centre, in Liverpool. This team can include pathologists, radiologists, surgeons and oncologists who are all specialists in their respective field. All appropriate information is required so that the specialist team can have meaningful discussion, which could include relevant radiology reports and key clinical indicators.
For those who have their initial diagnosis of a brain tumour in an emergency department, much of this information is provided to The Walton Centre by the hospital at which they attended A&E. If all relevant information is not included, discussion at SMDT can be delayed and patients may be left with further uncertainty as they await a diagnosis.
In this situation there are reactionary updates between The Walton Centre (which may require more information) and the secondary care provider, usually the hospital where the patient first presented in A&E. This A&E department may not know that this information was initially needed. This situation can lead to disjointed care, poor information flows between healthcare providers, and patients left with little information about what will happen next.
The lack of a formalised pathway for brain tumour patients has been identified as the root cause of this poor patient experience, and work to address this problem by colleagues in St Helens & Knowsley Teaching Hospitals NHS Trust (STHK) led to a collaboration with The Walton Centre.
This aim of this collaboration was to ensure that patients diagnosed with brain tumours in A&E had a formalised pathway, which coordinated care and provided patients and their carers with the appropriate support from the point of diagnosis in A&E.
This formalised pathway would also have potential benefits to the wider healthcare system and the workforce, by supporting clinical teams to make the most appropriate decision, reducing length of stay for those patients who are eligible and minimising repeated imaging diagnostics which may not be necessary.
After implementation, this innovative pathway ensures there is input from specialist teams within secondary care from the point that brain tumours are identified in A&E, with appropriate guidance on the use of steroid to manage the symptoms of a brain tumour also in place. Patients receive all appropriate information and are informed of all the next steps in their journey towards a diagnosis.
For patients’ diagnostic journey to be streamlined and coordinated, there is a defined process for all appropriate diagnostic scans, which helps local hospital teams to identify when input is needed from clinicians at ‘tertiary’ specialist centres, such as The Walton Centre or The Clatterbridge Cancer Centre. Along each step of their journey, patients have a key worker who can support them and their loved ones.
The pathway is designed for both primary and metastatic brain tumour patients, ensuring those with metastatic disease have input from site-specific oncologists before input from neuro-surgical specialists at The Walton Centre which may be required.
The pathway aims to minimise delays and the disruption this can cause for patients, done so by ensuring the appropriate specialists are involved in their care from the point of initial diagnosis in A&E.
Put together, the pathway ensures that The Walton Centre receives all appropriate information to enable meaningful discussion amongst the SMDT in order that a diagnosis can be made in a timelier manner.
This collaboration between STHK and The Walton Centre caught national attention and won awards, including at the Nursing Times Awards and the Macmillan Professional Excellence Awards, in 2022.
Working with The Walton Centre, CMCA is supporting other secondary providers to implement and deliver this pathway to better support patients presenting with brain tumours in A&E. To do this, collaboration is required, not just internally at acute trusts but also externally with tertiary providers, such as The Walton Centre.
There has been a genuine desire to improve things from across acute medicine, A&E, radiology, acute oncology and cancer services (to name a few), which has proved invaluable as CMCA has worked to implement this pathway across Cheshire and Merseyside.
Working in partnership with third sector organisations, such as the charities The Brain Tumour Charity and brainstrust, ensures that the development of the pathway across Cheshire and Merseyside is consistent with the needs of patients and their carers.
Each of the key stakeholders provide valuable input into the development of the pathway, by keeping the patient at the centre and collaborating effectively to implement change. Colleagues at Warrington & Halton Teaching Hospitals and Wirral University Teaching Hospital have been working with The Walton Centre to implement the pathway since November 2022, with the support of CMCA.
Interest in the pathway from across the region was heightened following a ‘Share and Learn’ event hosted by CMCA regarding the collaboration between STHK and The Walton Centre.
The event, held in Liverpool in June 2022, provided the opportunity for colleagues from across A&E, acute medicine, radiology, acute oncology and palliative care to learn about the pathway.
The audience heard a powerful patient story, which highlighted the importance of the work done by STHK and The Walton Centre to design, implement and deliver innovative solutions to better support patients following diagnoses of brain tumours in A&E.
Working with an additional two hospitals to implement the pathway presents its own challenges. Provision of acute oncology and palliative care differs across the Cheshire and Merseyside region, and capacity within the current workforce has been tested over the recent winter period. Despite the current pressures facing the workforce across the sub-region, clinical and operational teams from across the acute trusts have all remained engaged, and focused on improving care and experience for patients diagnosed with brain tumours in A&E.
To ensure the implemented changes are effective, education is key to raise awareness of the presentation of new brain tumours in emergency departments, and the ongoing work to better support patients who present in this manner.
Education sessions supported by specialists at The Walton Centre do just this, aimed at colleagues in acute medicine, acute oncology, radiology and palliative care with information regarding brain tumours; the typical patient journey from diagnosis to possible treatment; and how the pathway at STHK improves patient care and patient experience.
The Walton Centre has also earned the status of a Tessa Jowell Centre of Excellence, which allows local clinical teams from across Cheshire & Merseyside access to educational resources through the Tessa Jowell Academy, designed to inform the workforce on the management of patients diagnosed with brain tumours.
As we look ahead to the future, CMCA is committed to ensuring equitable cancer care across the region. The ultimate aim is to ensure that patient in Cheshire and Merseyside who is diagnosed with a new brain tumour in A&E is supported in the best way possible –and there is minimal difference in the standard of care they could expect between emergency departments across the sub-region.
Other secondary care providers in Cheshire and Merseyside are interested in implementing the pathway, and the meeting of a newly established delivery group with a range of regional stakeholders is due to be held for this first time in April 2023.
By taking a system-wide approach to the delivery of the newly coined ‘Emergency Brain Tumour Pathway’, there will be shared learning between clinical teams and a means for best practice to spread across the sub-region.
It has been clear from the beginning of the pilot at STHK, that collaboration is key. The Walton Centre continues to support the implementation of the pathway across the region, working with clinical and operational teams in acute trusts to improve patient experience and patient care.
With many thanks to all the teams involved at Warrington & Halton Teaching Hospitals, Wirral University Teaching Hospital and, STHK, who identified the need for such work to begin with. Also a special mention to those at The Walton Centre (Sam Holman, Emma Wilby and Mr. Andrew Brodbelt) who have been supporting the delivery of the pathway across the region.
For any queries regarding the Emergency Brain Tumour Pathway in Cheshire and Merseyside, please email ccf-tr.admin.cmca@nhs.net, with subject ‘Emergency Brain Tumour Pathway’.