Meet a neuro oncology Clinical Nurse Specialist

Clinical Nurse Specialist (CNS) Catharine James has been working in the Neuro Oncology team at University Hospitals North Midlands NHS Trust (UHNM) for over twenty years and is passionate about the crucial role that the CNS plays in helping patients, and also their families, navigate the complex journey following a brain tumour diagnosis.

Catharine talked to us about what her role involves and also how her role and the support provided by Brain Tumour Support work together to make a crucial difference for patients and families, particularly as they move on beyond hospital care.

What is the role of a CNS?

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We are here to support both the patient and their family, provide written information, explain treatment and answer questions.

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Neuro oncology CNS, Catharine James

We work in partnership with ward staff and other colleagues to ensure referrals to other support services are made if required such as to your local community cancer and palliative care teams.

Importantly, we can provide support for both malignant and non-malignant tumours alike. The care path for any grade of brain tumour is often complex, requiring a multidiscipline team approach.

What can patients access through you?

We are the key link from the patient to the multi professional team who are responsible for a patient’s treatment and care and we can access and provide

  • Up to date clinical information

  • Practical advice and answers to questions

  • Emotional support

Brain Tumour Awareness Month

What sort of subjects could you discuss with a patient?

Brain tumours can be very complex to treat and affect so many aspects of life, and the concerns and questions raised by patients reflect this

  • Surgery

  • Radiotherapy and chemotherapy

  • Benefits/financial entitlement

  • Support services including social services, home care and hospice care

  • Emotional and psychological support and counselling

  • Symptom management

  • Fatigue management

  • Employment

  • Driving and holiday travel

  • Help with adaptations for the home

  • Medications

  • Local and national support groups

  • How to contact other members of the health care team

How does your role benefit the patient?

We can improve patient care by using and applying technical knowledge of brain tumours and treatments to oversee and coordinate services.

We personalise ‘the brain tumour pathway’ for individual patients to meet the complex information and support needs of patients and their families. We are the ‘friendly face’ and the accessible link to the multidisciplinary team.

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Our empathy, knowledge and experience of the psychological and social impact of a brain tumour is also crucial. It means we can play a key role in the management of patient care and understand the importance of referring to other agencies or support services as appropriate.

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CNS team Louise Montgomery, Catharine James and Louise Shingler receive a thank you gift from a patient

CNS teams working with Brain Tumour Support

Support Professional Lucy Wilkinson explains how important working with her local CNS team in Birmingham is to reach patients and families:

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I have worked alongside the CNSs at the Queen Elizabeth Hospital since I began working for Brain Tumour Support, almost five years ago.

I first met the CNS team when I attended the weekly oncology out-patients clinic. I’d provide an additional means of support and information to people attending clinic, and the CNS would regularly introduce me to new patients and their loved ones, so that I could tell them about the support offered by BTS in the form of support groups, telephone and email support and our specialist counselling service.

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Support Professional for Brain Tumour Support, Lucy Wilkinson

The CNS has often introduced me to patients who are socially isolated and feeling alone following their diagnosis. Then via the groups that BTS provides - both face to face pre-Covid and our current online groups - I have managed to link them with others who are in similar situations, which has really helped them to feel connected, supported and understood.

Due to Covid, we suspended our face-to-face support, including my attendance at clinics, although I have remained in contact with the CNSs and have welcomed new referrals and enquiries from them throughout lockdown and beyond. I've missed the clinic contact with the CNS team and I've missed sitting with patients, many of whom were feeling scared and alone and just appreciated the familiar face (and cup of tea!) that I could offer.

I look forward to the future and getting back to being present in clinic, re-connecting with the team and connecting with the patients and families - both old and new!

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