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This booklet has been designed to give you information about the medical team responsible for your treatment. We hope it will answer some of the questions that you or those who care for you may have at this time. This booklet is not meant to replace the discussion between you and your consultant, but aims to help you understand more about what is discussed.

Following your recent diagnosis of brain and central nervous system cancer, you will receive support and treatment from different clinicians who form the MDT. The MDT consists of doctors, nurses and other professionals who meet together to assess your condition and plan treatment and care appropriate for you. In order to do this, the members of the MDT meet every week to discuss people with a new diagnosis and to review those who have previously been diagnosed with cancer. Due to the nature of the disease, there may be a number of investigations and treatment options available and more than one specialist is likely to be involved in your care. It is essential that everyone involved can share their expertise and understanding about your case, even though you will not personally meet all the members of this team. Your consultant and the medical team will discuss any decisions with you and your family in the clinic at the next visit or while you are admitted on the ward. They will answer any questions you have on the benefits and risks of your treatment options. Your GP will also be sent a summary of your agreed treatment plan.

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All clinical communications copied to your GP may also be sent to you at your request. Please discuss this with your clinical nurse specialist/key worker. Your MDT is made up of the following professionals who care for patients with brain and central nervous system cancer: Neurosurgeon This surgeon has expertise in performing operations on the central nervous system, which is the part of the nervous system that consists of the brain and spinal cord. Brain and central nervous system clinical nurse specialists The clinical nurse specialist acts as a point of contact for you and your family throughout your treatment, providing help and advice where needed. He/she will be familiar with your case, plan your assessments and investigations, and ensure that findings from those investigations and care plans are communicated to other healthcare professionals involved in your care. He/she may be designated as your key worker. Your key worker will be your point of contact during your illness. Radiologist This doctor specialises in interpreting x-rays and scans from which a diagnosis is made. Clinical/medical oncologist A medical oncologist is a specialist in using chemotherapy and other drugs for the treatment of cancer. A clinical oncologist may also prescribe the use of radiotherapy as well as chemotherapy. Histopathologist This doctor is a specialist in using a microscope to examine the tissue cells removed during a procedure. He/she can detect features of cell structure which reveal abnormalities. Dietician A dietician is a specialist in nutrition who provides advice on what and how to eat, as well as different feeding methods, taking into account each individual’s needs and condition. Speech and language therapist A speech and language therapist helps with managing swallowing, voice, speech, language and communication problems which may be caused by cancer or its treatment. Physiotherapist A physiotherapist will look at your balance, strength and mobility to check that you can move around safely. He/she helps with getting your lungs and breathing back to normal after surgery. They teach exercise programs which include special deep breathing and coughing exercises, and aim to get you walking as soon as possible after your operation. This is to help prevent chest infections, increase your independence and therefore speed up the recovery process. Occupational therapist An occupational therapist helps patients to look after themselves despite their illness and disabilities. He/she will look at how well you manage everyday tasks and suggest changes to help you to continue normal life.

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Palliative care consultant and nurse specialist Palliative care focuses on the relief of pain and other symptoms and problems experienced in serious illness. The goal of palliative care is to improve quality of life. The palliative care nurse may become your key worker depending on your needs. Clinical trial coordinator A clinical trial coordinator is someone who specialises in screening patients for possible inclusion into clinical trials on the basis of their eligibility. Once a patient has been approached and given their consent to enter into a trial, a clinical trial coordinator is responsible for assisting clinicians in co-ordinating trial-related assessments and patient follow-up. MDT coordinator The MDT coordinator provides administrative support and prepares information for the weekly multidisciplinary team meetings.

Every person diagnosed with cancer is different and a number of factors will influence which treatment(s) is appropriate for you. These include the type and size of the tumour, whether it has spread to other local (or distant) areas, your age and your general health. These factors as well as your lifestyle will also influence how effective your treatment will be in dealing with your cancer and will be discussed with you by your consultant. In addition, you will be provided with information leaflets about the above treatment options. You may be offered one or a combination of:

Surgery

Chemotherapy (using anti-cancer drugs)

Radiotherapy (using x-rays)

Supportive care and palliative care

You do not have to accept your treatment plan. Other options, if available, will be discussed with you and we will give you time to consider these further before you make a final decision. You may wish to obtain a second opinion about your treatment and diagnosis from another specialist. This can be discussed with your consultant. If you do not know who to contact, we can suggest appropriate specialists for you to consider and will provide copies of your medical notes, x-rays and scans to them. This may prevent you having to repeat tests unnecessarily. If you prefer, we can also make the referral for you. Your GP can also suggest appropriate specialists and refer you to them. Getting a second opinion could delay the start of your treatment, so you and your consultant/GP need to be confident that there is enough time to obtain this information.

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Surgery for brain and central nervous system cancer is carried out at Charing Cross Hospital and your radiotherapy and/or chemotherapy treatment will also be done at Charing Cross Hospital. If you would like to reschedule your outpatient appointment or have any queries regarding the appointment dates, please contact the outpatient booking centre:

Charing Cross and Hammersmith hospital – 020 3313 5000 It is important that you make a list of all medicines you are taking and bring it with you to all your clinic appointments. It may help to write down questions as you think of them so that you have them ready. It may also help to bring someone with you when you attend your outpatient appointments. Useful contact numbers

Name of your consultant: ……………………………………………………………………………………..

Name of his/her secretary: ……………………………………………………………………………………...

Telephone: ……………………………………………………………………………………………………….

Name of your clinical nurse specialist/key worker ………………………………………………………

Telephone: ……………………………………………………………………………………………………….

Email: ……………....................................................................................................................................

Other team members involved in your care: Name of the team member: ………………………………………………………….....................................

Telephone: ……………………………………………………………………………………………………….

Job title: …………………………………………………………………………………………………………..

Name of the team member: …………………………………………………………………………………….

Telephone: ……………………………………………………………………………………………………….

Job title: …………………………………………………………………………………………………………..

We are all individuals and cope in different ways and need different lengths of time to adjust to a cancer diagnosis. Your medical team is here to support you. You may want to discuss your worries or concerns with your clinical nurse specialist/key worker who can provide help and advice. Macmillan Cancer Information and Support Service at Charing Cross Hospital The information centre provides vital emotional and practical support to anyone affected by cancer, every step of the way. Our highly skilled and dedicated Macmillan information specialist is here to answer your questions about cancer. She can also signpost to other ways of getting the support you

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need. The service is set in a warm, friendly and confidential environment and is located on the ground floor of the Charing Cross Hospital. The centre is open (except bank holidays):

Monday and Friday 9:00-17:00

Tuesday, Wednesday, Thursday 9:00-16:00 Telephone: 020 3313 0171 Maggie’s Cancer Caring Centre Maggie’s is a cancer charity that creates places providing the emotional, practical and social support that people with cancer need. The centre combines striking buildings, calming spaces, professional experts offering professional support, and the ability to talk and share experiences with a community of people who have been through similar experiences. Maggie’s West London is located in the grounds of Charing Cross Hospital, but please note it is independent of our hospital. The centre is open Monday to Friday, 09:00-17:00. For more information please call 020 7386 1750. Other sources of information

Macmillan Cancer Support Helpline This is a free telephone line for people affected by cancer who have questions about cancer, need support or just someone to talk to. It is open from Monday to Friday, 09.00 – 20.00 (interpretation service available). Helpline: 080 8808 0000

Information Prescription Service This service contains reliable and accurate cancer information to help patients manage their health more effectively. Website: www.nhs.uk/ips

Benefits Enquiry Line The service provides advice and information on the range of benefits available. Telephone: 0800 88 22 00

Brain Tumour UK This charity provides support for those affected by brain and central nervous system tumours. Helpline: 0845 500 386 Website: www.braintumouruk.org.uk

Cancer Research UK This cancer charity funds world-class research, provides information for patients, health professionals and the public, and influences public policy to keep cancer at the top of the health agenda. Website: www.cancerresearchuk.org

Carers UK This charity provides information and advice to carers and the professionals who support carers. Telephone: 080 8808 7777 Website: www.carersuk.org

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We aim to provide the best possible service and staff will be happy to answer any questions you may have. However, if your experience of our services does not meet your expectations and you would like to speak to someone other than staff caring for you, please contact the patient advice and liaison service (PALS) on 020 3313 3322 (Hammersmith Hospital) or 020 3133 0088 (Charing Cross Hospitals), or 020 3312 7777 (St Mary’s Hospital).

You can also email PALS at pals@imperial.nhs.uk. The PALS team is able to listen to your concerns, suggestions or queries and is often able to help sort out problems on behalf of patients.

Alternatively, you may wish to express your concerns in writing to:

The chief executive Imperial College Healthcare NHS Trust Trust Headquarters The Bays, South Wharf Road London W2 1NY

This leaflet can be provided on request in large print, as a sound recording, in Braille, or in alternative languages. Please contact the communications team on 020 3312 5592.

Oncology Published: Sep 2012

Review date: Sep2015 Reference no: 2207T

© Imperial College Healthcare NHS Trust