The Macmillan Neuro-Oncology Nursing Service for Patients with Brain and Spinal Tumours

Patient Leaflets Team

  • Reference Number: HEY-466/2020
  • Departments: Neurosurgery

Introduction

This leaflet contains general information about the role of the Macmillan Clinical Nurse Specialist (CNS) for Neuro-oncology and outlines the support and advice that is available to you throughout your care.

Being diagnosed with a brain or central nervous system tumour can turn people’s lives upside down.  It can lead to feelings of isolation and life may seem out of control. Many different problems and concerns can affect people in this situation.

What is a Neuro-Oncology Clinical Nurse Specialist (CNS)?

The Macmillan Neuro-oncology Clinical Nurse Specialist is here to offer support and information to patients and their relatives from the time when a person is first diagnosed with a tumour in the brain or central nervous system. The Clinical Nurse Specialist works as part of the Neuro-oncology Multi-disciplinary team (MDT), working closely with you and your Neurosurgeon and /or Oncology Consultant, and other members of the health care team.

The Macmillan Neuro-oncology Clinical Nurse Specialist (CNS):

  • Works as part of the multi-disciplinary healthcare team (MDT) to support patients with tumours or suspected tumours of the brain and spine, including tumours of the pituitary gland.
  • Provides a link between the healthcare team in hospital and your doctor or District Nurse.
  • Can be a point of contact for patients and families who require further information about their condition and treatment.
  • Provides ongoing support for patients with brain and other central nervous system tumours.
  • Advises and provides information on radiotherapy and chemotherapy and their side-effects.
  • Advises and provides information on other aspects such as seizures, fatigue, other symptoms, practical matters such as travel insurance, wig information, and financial concerns
  • Provide continuing support for you and your family during and after your treatment, acting as your key worker (please see information at the end of this leaflet explaining about the key worker role).

What does a Clinical Nurse Specialist (CNS) do?

The Clinical Nurse Specialist will act as a link between the various healthcare professionals involved in your care, and can provide support and information relating to your brain or central nervous system tumour.

Along with the nurses, doctors and therapists in the team, the Clinical Nurse Specialist will work with you and your family or carer to discuss your treatment planning through to your discharge from hospital.

If, following your treatment you require ongoing care, the Clinical Nurse Specialist will work with you, your family and the multi-disciplinary team to ensure your care needs are met. If you live some distance from the hospital, this may mean referring you on to health professionals near to your home.

When you leave hospital, the Clinical Nurse Specialist provides support, either by telephone or by seeing you at the hospital. If, when you leave hospital, you have concerns or questions relating to your condition and treatment, the Clinical Nurse Specialist can be contacted for advice.

The Clinical Nurse Specialist will also provide advice on symptom management for you and liaise with your Neurosurgeon, doctor or other specialist regarding your medication.

Some patients may simply want advice over the telephone. Others may require a longer structured period of support. The Clinical Nurse Specialist will work with you and your carer/s to discuss your individual needs.

When to contact my clinical nurse specialist

You can ask your nurse or doctor to refer you or can contact the service by telephoning the number below.

The service is available between 8.00am – 4.00pm Monday – Friday.

The Clinical Nurse Specialist team can be contacted (01482) 607831

There is a voicemail service for you to leave a message if there is no answer, and messages are picked up throughout the day during working hours. Please leave your name and number and the Clinical nurse Specialist will contact you to discuss your questions/concerns over the telephone or arrange to meet with you.

If you need advice  and are unable to contact the Neuro-oncology nurses you should contact your own doctor, or contact Ward 4 at Hull Royal Infirmary on (01482) 674248 / 674855. If you are under the care of the oncology Consultants, the oncology triage and support line on (01482) 461098 (out of hours (01482) 875875 and ask for bleep 500).

KEY WORKER

As your Key Worker, the Clinical Nurse Specialist is a main point of contact for you during and after your treatment, for information, advice and support.  (This does NOT mean and emergency contact). If at any point either during or after your treatment we feel that a member of your local community healthcare team is more appropriate to be your key worker then this will be discussed with you accordingly (this may be a doctor, District Nurse or Community Macmillan Nurse).

General Advice

Help and advice can be obtained from many different professionals caring for you. If you have questions or concerns that the Clinical Nurse Specialist are unable to answer, the Clinical Nurse Specialist may refer you on to another Health Professional with your consent. Discussion with the Clinical Nurse Specialist is not meant to replace any discussion you may have with the healthcare team.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Neurosurgery Department on telephone number (01482) 674248.

QR code to open leaflet