The Neuro-Oncology team at King's College Hospital are excited to welcome Charlotte Robinson into the first funded low grade glioma CNS post in the UK
Charlotte brings four years of oncology and surgical experience with her which will give her appropriate insight to working with this patient group.
Charlotte previously attended the Young Adults Service in October, one-stop clinic at Guy's Hospital whose largest cohort of patients is from neuro-oncology; she is really excited about getting involved with this group of particularly vulnerable patients.
Charlotte will develop a service where a holistic support network is established which caters for all of patient's holistic needs.
Charlotte says: “I want to do all I can to be there for patients with low grade brain tumours - whether that is with advice on symptom management or emotional support and someone to talk to.
“I'm really excited about what potential this role has for patients and hope to make their experience as straightforward as possible."
Her appointment marks a landmark development in The Charity's drive to improve the quality of life care for all those affected by this devastating disease and its own research has shown the benefits of having such a one point of contact throughout their treatment and aftercare.
In our report Finding Myself in your Hands: The Reality of Brain Treatment and Care (2016) only 53% of people diagnosed with a low grade tumour said that they had access to this single point of contact.
This compared to 76% of those diagnosed with a high grade brain tumour.
When people do have access to a clinical nurse specialist, 74% say they are satisfied with the care they provide.
However, those without a CNS or other single point of contact were:
- 1.5 times more likely to report a high symptom burden (43.6% compared with 29.1%)
- 1.6 times more likely to say that their brain tumour had severely affected their emotional or mental health (30.7% compared with 19.6%)
- 2.7 times more likely to disagree they had good access to information on managing symptoms (46.1% compared with 17.1%)
- 4.7 times more likely to disagree that that the healthcare professionals they dealt with understood brain tumours (44% compared with 9.4%)
Prof Keyoumars Ashkan, Professor of Neurosurgery, Kings College Hospital said: “Our partnership with The Brain Tumour Charity to appoint Charlotte as UK's first charity funded Low Grade Glioma Clinical Nurse Specialist underpins our joint commitment to improve the care of this group of patients.
“The unmet need to address the holistic care of these patients is an area of high priority and this appointment will go a long way to progress our neuro-oncology service in general and the Low Grade Glioma service in particular in the quest to meet these challenges.
“This unique development is a witness to the shared ethos and vision of The Brain Tumour Charity and the King's Health Partners to provide world class care for our patients."
Emma Tingley, our Director of Services and Influencing said: “We are committed to having the biggest possible impact for everyone affected by a brain tumour in the UK and are delighted to be funding our first Clinical Nurse Specialist in partnership with Kings College Hospital.
“For those diagnosed with a low grade tumour, who live with the sustained and significant consequences and impact of this, they often miss out even on the essential services because they have not been given a cancer diagnosis.
“This first Clinical Nurse Specialist post will focus on providing a dedicated service to those diagnosed with a low grade brain tumour.
“Having a single point of contact from diagnosis is essential in reducing the burden of symptoms, including the emotional and mental health difficulties that often result from the diagnosis."
We will keep you updated with planned future CNS appointments in the coming months.