Information for patients living with lung cancer
Introduction
Being diagnosed with lung cancer can be a confusing and bewildering experience. During your treatment you will meet many different professionals who will be involved with different aspects of your care. This booklet will help you to understand who they are and what they do.
There is a lot of information available for you to read about your treatment, how to manage throughout treatment and how to manage your symptoms and also who to turn to for advice. Sometimes it is difficult to know where to start.
The information below will give you a guide to the key people you will meet, and tell you how to get hold of someone if you need to. It will also help you to find out where to go for further information and advice if you need it.
The Team
During your treatment you may meet many different doctors and other specialists. When you have lung cancer, your treatment is most effective when the specialist doctors work together. In that way, each doctor is responsible for the part of your care for which they have specialist training and experience.
Your case will be discussed at a multi-disciplinary meeting when the appropriate treatment for you will be decided. You will continue to see a member of the Lung Care Team as an outpatient, both during and after treatment is completed.
Chest Physician
For many of you, the chest physician will make the diagnosis of your disease and he/she will be in charge of your care at this time:-
- Dr Simon Webster / Dr Tuck Loke / Dr Ash Satgunarajah – Tunbridge Wells Hospital
- Dr Ravish Mankragod / Dr S Husain – Maidstone Hospital
If you do not need any further treatment at this point, the chest physicians will continue to look after you. However, if at any time he/she wants advice from the other doctors about specialist treatment, he/she can discuss with them or ask them to see you.
Your doctors regularly meet up with an Oncologist (listed later), to discuss the care of all patients with lung cancer. Many of you will be referred by your chest physician to one or more or the other doctors who specialise in lung cancer treatment.
Macmillan Lung Care Clinical Nurse Specialist / Key Worker
In order to ensure that patients with cancer and their families are able to access appropriate support and information, all patients should have a known healthcare professional who they can contact. This person is called a Key Worker. Your Key Worker will be available from diagnosis, through treatment and beyond.
Because care takes place in a variety of settings, such as in hospital and in the community, your Key Worker will change at various times. However, it will always be the most appropriate person for your circumstances, and you should always know who they are and how to contact them.
Your Key Worker should work with you in the following ways:
- They are a central point of contact for support and information for you and your family.
- They will assess your needs and ensure you receive the care you need and that you are involved in decisions about your care as much as possible.
- They will ensure you are referred to, and receive, different services as needed.
Sometimes it is not the cancer that is the most worrying thing that is going on – it can be financial issues. The Macmillan Lung Care Clinical Nurse Specialist can assist with providing useful contact details and telephone number to assist in the claiming of benefits.
Who is your Key Worker?
This depends on your particular needs. When you are told your diagnosis, you will usually be offered the opportunity to meet with a Macmillan Lung Care Clinical Nurse Specialist (CNS). The CNS has in-depth knowledge of your illness and its treatment and will be able to discuss any concerns and questions you might have. They will prepare and support you through your care and treatment. The CNS will be your Key Worker and their contact details are as follows:
Maidstone Hospital – 01622 225256
Key Worker: Sandra Wakelin / Fran Bevans
Monday – Friday: 9am – 4pm (excl Bank Holidays)
Answerphone messages picked up twice daily
Tunbridge Wells Hospital – 01892 635358
Key Worker: Louise Gilham / Alison Smith / Florina Hewitt
Monday – Friday: 9am – 4pm (excl Bank Holidays)
Answerphone messages picked up twice daily
In some circumstances there may not be a CNS available. If this is the case, other healthcare professionals will support you – these include Ward Nurses, your Consultant or the Clinic Nurses.
If you are at home or have finished your initial treatment, your GP, District Nurse or Community Palliative Care Nurse will be your Key Worker.
Alternatively, if you require further information please contact the Macmillan Cancer Information Centre on 01622 227064 or Macmillan Cancer Support on 0808 808 0000.
Macmillan Cancer Support Worker
Our Macmillan Cancer Support Worker, Michelle Bird, works closely with your Key Worker (Macmillan Lung Care Clinical Nurse Specialist) and can provide help and support to patient and carers by triaging calls, co-ordinating appointments and investigations and assisting with enquiries from patients/carers and other healthcare professionals.
Lung Multi-Disciplinary Co-ordinator
Our Lung Multi-Disciplinary Co-ordinator is responsible for ensuring patients have a seamless pathway through their treatment. Once you have been referred to our team, the Co-ordinator will ensure that all required investigations are requested and performed to comply with the national guidelines. The Co-ordinator collates all the information required for the multi-disciplinary team to decide upon your care and treatment decisions.
Multi-Disciplinary Meeting
This meeting takes place on a Thursday and all the team members involved with your care meet to discuss patient management plans – this includes the Lung Care CNS’s, Chest Physicians/Respiratory Consultants, Radiologists, Oncologists and Thoracic surgeon. The Lung Care Clinical Nurse Specialist or member of the Lung team will contact you with any decisions made at that meeting. In some instances, patients may be asked to attend a hospital appointment at short notice.
Medical Secretary
Consultants’ secretaries play an important role as they are a link between your Consultant and other medical professionals.
Oncology (Chemotherapy / Immunotherapy / Targeted Therapy)
Drug treatment (chemotherapy / Immunotherapy / Targeted Therapy) is often used to treat lung cancer. This is given under the care of Dr Shah or Dr Sevitt at either the Kent Oncology Centre at Maidstone Hospital or The Tunbridge Wells Hospital at Pembury.
Oncology (Radiotherapy)
X-ray treatment (Radiotherapy) is often used to treat lung cancer. This is given under the care of Dr Sevitt at Kent Oncology Centre, Maidstone Hospital.
Chemotherapy / Immunotherapy / Targeted Therapy Nurse
Chemotherapy / Immunotherapy / Targeted Therapy is given by nurses who have undertaken extra training in the care of patients with cancer. The treatment can be given in the Haematology Oncology Day Unit (HODU) at Tunbridge Wells Hospital or in the Charles Dickens Oncology Day Unit (Charles Dickens) at Maidstone Hospital. The nurses will be able to answer your questions about your treatment and give you further written information at pre-assessment clinic before you start treatment.
Thoracic Surgeon
Patients may require a surgical procedure to obtain a biopsy. Surgery is also performed to remove lung cancer. The chest (thoracic) surgeon, Mrs Karen Harrison Phipps, performs these operations at Guy’s Hospital in London. She has a clinic at Maidstone Hospital on Thursdays.
Radiologists
Your X-rays and scans will be reported on by a Consultant Radiologist from the Radiology Team. If you need to have a special scan or CT/Ultrasound guided biopsy this will be performed by the Radiologist. Consultant Radiologists also attend the lung cancer meetings (Multi-Disciplinary Meeting/MDM) to discuss your scans / management.
Community Palliative Care Team
If you need support or help with your symptoms at home, your Key Worker will be able to refer you to the Community team. The teams are based locally at Hospice in the Weald (Pembury), St Catherine’s (Crawley), Heart of Kent (Maidstone), Wisdom Hospice (Rochester), St Catherine’s Hospice (Uckfield). They are able to offer advice and support by visiting you regularly in your own home.
Clinical Trials
Clinical Trials are in progress to try to improve the management of lung cancer with chemotherapy, immunotherapy, targeted therapy and radiotherapy. Research nurses work closely with the oncologists and are available to explain about any proposed trial. Entry into a trial is completely voluntary and if you do not wish to be involved, the doctors will understand. It will not affect the care you receive.