The Macmillan Neuro-Oncology Nursing Service for Patients with Brain and Central Nervous System Tumours

  • Reference Number: HEY-466/2016
  • Departments: Neurosurgery

Introduction

This leaflet has been produced to give you general information about the role of the Clinical Nurse Specialist for Neuro-oncology.  It outlines the support and advice that is available to you throughout your care.  It is not intended to replace the discussion between you and the Clinical Nurse Specialist but may act as a starting point for discussion.  If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.

What is a clinical nurse specialist?

The 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 of the brain and/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 Oncology Consultant and/or Neurosurgeon.

The Clinical Nurse Specialist:

  • Works as part of the multi-disciplinary healthcare team, to support patients with tumours, or suspected tumours of the brain and spine.
  • Provides a link between the healthcare team in hospital and your GP 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 spinal tumours.
  • Advises and provides information on radiotherapy and chemotherapy and their side-effects.
  • Advises and provides information on other aspects such as seizures, fatigue, 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 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 on the ward, 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 in the outpatient clinic.. 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, GP 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.

How do I contact a clinical nurse specialist?

Referrals to the Clinical Nurse Specialist team can be made by any health professional, either in the hospital or community.

You can ask your nurse or doctor to refer you, or can contact the service yourself on telephone number (01482) 607831. If it is the answer phone please leave your name and number and one of the team will contact you to discuss your questions/concerns over the telephone, or arrange to meet with you.

The service is available between 8am – 4pm, Monday – Friday.

When to contact my clinical nurse specialist

The Clinical Nurse Specialists can be contacted on telephone number (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.

If you are unable to contact the Clinical Nurse Specialist, and need advice out of hours, you should contact your own GP, or contact Ward 4 on (01482) 674248 / 674777 for advice.

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 an 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 GP, 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 cannot 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 your doctor.

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.