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Charity-funded CNS to support hospital patients with low-grade brain tumours

Patients with low-grade brain tumours often lack support from a clinical nurse specialist, but that will no longer be the case at King’s College Hospital in London, with the appointment of neuro-oncology nurse Charlotte Robinson. She talks to Lynne Pearce about her new role

Patients with low-grade brain tumours often lack support from a clinical nurse specialist, but that will no longer be the case at King’s College Hospital in London, with the appointment of neuro-oncology nurse Charlotte Robinson. She talks to Lynne Pearce about her new role

Brain_tumour,_3-D_MRI_scan-SPL
A model of the head of a woman from MRI
scans revealing a low-grade glioma tumour
(red). Picture: Science Photo Library

Some patients with low-grade brain tumours lack the support given to others with a cancer diagnosis, says the Brain Tumour Charity.

To address the needs of this highly vulnerable group of patients, the charity is funding a clinical nurse specialist (CNS) post at King’s College Hospital in London in what is thought to be a UK first.

‘Low-grade brain tumours are not as aggressive as high-grade ones, but patients still experience much anxiety and stress,’ says Charlotte Robinson, who was appointed to the role in October. ‘With this new service, my aim is to help alleviate those fears for patients and their families, with easily accessible information and support.’

Not taken seriously

Although low-grade tumours are usually benign, patients can suffer a range of distressing side effects, including numbness, fatigue, mobility problems and slurred speech.

Yet the charity’s 2016 report – Finding myself in your hands: the reality of brain tumour treatment and care – shows that while more than three-quarters of those diagnosed with a high-grade tumour had access to a single point of contact for their care, usually a CNS, only just over half of those with a low-grade tumour had the same access.

‘This demonstrates a real need for our service,’ says Ms Robinson. ‘One of my colleagues told me that a patient with a low-grade tumour said they wished it was high-grade so they would be taken more seriously.’

Chance to co-ordinate care

In the report, patients without access to a CNS had much higher levels of dissatisfaction with their care, including increased symptoms, severe effects on their emotional and mental health, and a lack of access to information.

Charlotte_Robinson
Charlotte Robinson says her aim
is to help alleviate fears for
patients and their families.

After qualifying four years ago, Ms Robinson worked in cancer nursing, starting at Guy’s Hospital in London on a head and neck oncology ward. She then managed a general oncology ward before taking up her current post within the neuro-oncology team.

‘The CNS role has always appealed to me, because you have the opportunity to gain expert and specialised knowledge, understanding an area in depth so you can really co-ordinate the care of that group of patients,’ she says.

Worrying for weeks

Raising awareness is among the key attractions of Ms Robinson’s role. ‘The public has little knowledge about brain tumours,’ she says. ‘It’s also such a unique post as it’s funded by a charity.

‘The fact that it has been created following patient research shows it’s very worthwhile and rewarding. I’m the first, so it is daunting, but everyone is extremely supportive.’

In practice, she anticipates that much of her day-to-day work will involve responding to patients’ queries and concerns, offering advice on symptom management and providing emotional and psychological support. She has also started a monthly clinic with a consultant neurosurgeon to manage patients who need further treatment, including surgery.

‘I want patients with questions to have answers quickly, without having to worry for weeks on end,’ says Ms Robinson. ‘A lot of my role consists of listening and supporting. Even a phone call to let them know I’m here helps.’


Lynne Pearce is a freelance health journalist

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