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Please bring this information sheet with you to your next outpatient appointment or if you are admitted to hospital for any length of time. Feel free to bring a relative or friend to your appointments especially if you do not speak, read or understand English. If you need an interpreter, we can arrange this for you if you or your family doctor tells us in advance that this is needed. In this information sheet you will find information about the team of health professionals involved in your care and some contact details that you may find useful. If you want to find out more about colorectal or anal cancers, we have also listed some local and national support group organisations on pages 7-10. Your friends and family may also find this useful. There is a diary for you to fill in on page 11 to make it easier for you to remember who you have met in the hospital and how your care is progressing. If you are a patient diagnosed with colorectal (bowel) cancer or anal cancer, your individual case will be discussed by a highly qualified team of clinicians with specialist knowledge. This team is called a multidisciplinary team (MDT) and meets every Thursday at 07.45. Please note that regardless of which specialist you were referred to or how your care was transferred to us, your case will be discussed at this meeting if you have, or are suspected to have, colorectal (bowel) cancer or anal cancer. At the MDT meeting, your medical records and investigation (test) results are made available to all the experts so that they can make joint decisions about your care based on all the facts of your case. The MDT room is equipped with technology that enables all clinicians to look at your scans, X-rays or histology on a large screen. The team will agree your plan of care with treatment options. The notes from the meeting are typed up immediately afterwards and recorded on an MDT summary sheet. One of the consultants and the specialist nurse will discuss these treatment options with you, usually in a clinic appointment soon after the MDT meeting. You will have an opportunity to ask questions to make sure that: You are clear about the treatment option that is being offered to you, and This is the best possible treatment option for you Therefore, it may be a good idea to bring someone along with you to this appointment. p1 We will also send a copy of your MDT summary sheet to your GP within 24 hours of this appointment, and offer you a copy to take home. We are happy to send you copies of the letters sent to your GP about your cancer care for your information. Please tell us during your consultation if you want these letters sent to your home address. At this time you will also meet your ‘keyworker’ who is usually a specialist nurse. Your keyworker will: Act as a direct link between you, your family and other health professionals throughout your pathway of care Answer any questions or concerns you may have, or direct you to the relevant people or organisations Ensure that you have the appropriate information and literature you need to understand your illness Discuss with you what support services there are available Ensure that all requested tests are booked within a certain time frame Liaise between you, your GP and the hospital clinicians The following section will tell you about some of the members of the multidisciplinary team you may meet at the hospital. Gastroenterologists You may have been referred by your GP to a gastroenterologist (a doctor who specialises in diseases of the bowel). The gastroenterologist may have initiated your investigations (tests) and perhaps performed your colonoscopy (an examination of the bowel with a small fibreoptic telescope), which diagnosed your cancer. Surgeons Your GP may have referred you directly to a surgeon, who may carry out a colonoscopy (see above) or refer you to a gastroenterologist for that. Surgery (operation) is the most common form of treatment for cancer of the bowel. Your doctor will discuss any proposed treatment with you. Please remember that no operation or procedure will be done without your consent. Radiologists During your time at hospital you will have had several X-rays and special scans that have determined the stage of your cancer. The results of these scans are interpreted by radiologists (X-ray specialists) and future treatment can then be planned. Oncologists and radiotherapists These doctors are cancer specialists. You will see an oncologist if you need further treatment such as chemotherapy (drug treatment), or a radiotherapist if you need radiotherapy (X-ray treatment). Sometimes it is necessary to have one of these treatments before you have surgery to ‘shrink’ the cancer and so make it easier to remove. Your doctor will discuss this with you. These doctors work closely with your surgeon and gastroenterologist. p2 There are Macmillan Cancer Support leaflets available containing written information on chemotherapy and radiotherapy. If you are interested, please ask your specialist nurse for a copy. Macmillan and other nurse specialists The role of these nurses is to support patients and their relatives with cancer from the time of diagnosis and throughout their illness. They include: 1. Colorectal nurse specialist/nurse practitioner/nurse consultant (usually your keyworker) This nurse will be available to you from the time your cancer is diagnosed until you are discharged from hospital. He/she will organise the MDT meetings, document the outcomes and action any points from the meeting. If you feel you need someone to talk to while you are waiting to come into hospital for your operation, please contact your specialist nurse who can arrange to meet up with you and your family. 2. Stoma nurse specialist If it is necessary for you to have a stoma/colostomy, then the stoma nurse can answer any questions you may have about this. She can also offer you support and follow-up care both in hospital and when you are discharged home. She/he will also teach you how to look after your stoma. 3. Macmillan nurse counsellor The Macmillan nurse counsellor can offer emotional support and advice to you and your family as well as information and guidance relating to symptom control. 4. Palliative care nurse Palliative care nurses offer patients with advanced cancer pain and symptom control with counselling and support. 5. Research nurses Imperial College Healthcare NHS Trust undertakes a number of research studies (also known as ‘clinical trials’) and so you may be asked to participate in research while you are in hospital. All research studies have to be approved by an ethics committee (which includes doctors, nurses and members of the public) before patients can be approached to participate. You will be given written information about the research before you are asked for your consent. It will not affect your treatment if you do not wish to take part in the research programme. Even if you do agree to take part, you will be free to leave the study at any time. Specialist nurses are available Monday to Friday between 09.00 and 17.30. Outside of these hours you can contact your GP. In case of emergency, go to your nearest accident and emergency (casualty) department. Histopathologist This doctor specialises in analysing tissue samples (biopsies or surgical specimens). p3 MDT coordinator MDT coordinator will help with preparation of the MDT meetings together with the specialist nurses. This includes obtaining notes and results of investigations (tests), and ensuring that the MDT summary sheets with the outcomes are filed in the medical notes and faxed to the GP surgeries within 24 hours. The extended MDT team includes clinicians that do not need to be present in every MDT meeting: A liver specialist will help to decide whether liver surgery may be appropriate if the cancer has spread there from the bowel, and will perform the liver surgery. Liver surgery is done at Hammersmith Hospital. A dietitian will advise you, your family and carers as well as staff about your dietary needs. A clinical genetecist is interested in looking into a patient’s family history of cancer and can advise family members about screening. A benefits advisor will advise and help you complete forms to claim benefits. There are many other members of the team (doctors, nurses, other specialists, researchers and managers) who are not all listed here. They each have special skills in dealing with a different part of cancer care and they will be involved in your care from time to time. A full list of the MDT members is available to you from your colorectal nurse specialist. We regularly look at how we work as a team of different experts to provide you with the best possible patient-centred care throughout your journey. We always look for ways to improve this care, and from time to time we may ask you to help us by filling in surveys about the Trust or services we offer. We would be grateful for any constructive feedback or suggestions from you or your relatives or carers about how we might try to improve the care we give you at present. This information can then be fed back to the patient user group, which is held once every three months to: discuss issues relating to the colorectal cancer service look at ways to improve care and provision of information discuss wider national issues such as screening For more details about the user group please telephone the colorectal nursing team on 020 3312 6560. All surgery for colorectal or anal cancers is performed at St Mary’s Hospital. However, if you need radiotherapy before surgery, you will have this at either Charing Cross Hospital or Hammersmith Hospital. Chemotherapy can be done either before or after an operation (your doctor will advise you) and is usually given at St Mary’s or Charing Cross hospitals. Some newer forms of chemotherapy can be taken at home. p4 What does the future hold? First we need to prove that you have cancer and what stage it is at. This will be done by looking at the results of various tests. Your doctor will tell you what investigations you will need and you can keep a record of them by completing the personal diary in this information sheet on page 10. Cancer is a frightening word surrounded by fears and myths. In fact, nowadays many cancers are curable if they are caught at an early stage. When a cancer is not completely curable, modern treatments often mean that the disease can be controlled for years and many patients can live an almost normal life. The answer to this question depends on many factors, for example: Your general health The stage of your cancer How well the cancer responds to treatment. All these factors make this question very difficult to answer. Even your doctors may not have all these answers. What happens now? You will undergo one or more investigations to give the doctors the information they need to decide the best treatment for you. They will discuss this treatment with you before it is started. The type of treatment you receive will depend on many factors, such as whereabouts in the bowel or anus the cancer is and the stage of your cancer (how far the cancer has spread). How will this affect my relationship with my family? Those people close to you will also be affected by your diagnosis of cancer. They may want to be supportive and helpful, but don’t know what to do or say. Relationships can change. You may find some people try to avoid you and this may upset you. If this happens, try to understand that some people may not know what to say to you but it will help both of you and those around you if you are able to tell them what you need. There are trained counsellors working as part of the Macmillan cancer care team at Imperial College Healthcare NHS Trust. They are able to offer counselling to you, your family and friends throughout your illness. You can ask your doctor or nurse specialist to refer you to one of the counsellors. p5 Some questions you may want to ask your doctor/nurse: What are the aims of the treatment? What are the side-effects of the treatment? How long will the treatment take? How will it affect my everyday life? What might happen if I don’t have treatment? Telephones Telephones are provided on each bedside table. They will accept incoming calls but you will need to buy a Patient Call card if you want to use the phone to make outside calls. Although the hospital does not operate a hospital-wide ban, patients and visitors should be aware that mobile phones can still cause disturbance to some hospital equipment, and loud ringtones or conversations can disturb other patients. Chaplaincy A chaplain or leader of your faith is available for spiritual, emotional and pastoral support or advice. Please tell the nurse if you would like a chaplain to visit you. Spiritual and religious facilities at Charing Cross Hospital: Chapel (Christian) on the ground floor, south wing Prayer room (Muslim) on the ground floor, laboratory block Sanctuary (all faiths and none) in the chapel, ground floor, south wing Spiritual and religious facilities at St Mary’s Hospital: Chapel (Christian, but open to all faiths and none) on the first floor, Mary Stanford wing Anglican Eucharist on Tuesday at 12.30 Catholic Mass on Sunday at 11.00 Prayer room (all faiths and none) on the ground floor, Clarence wing Prayer room (Muslim, with ablution facilities) on the ground floor, Clarence wing PALS PALS (the patient advice and liaison service) offices are located on the ground floor of Charing Cross, Hammersmith and St Mary’s hospitals. They are there to offer confidential on-the-spot advice and support and if necessary, can refer you to specific local or national-based support agencies. More information about PALS and their contact details are on page 11. p6 Mulberry Centre A drop-in centre, built within the grounds of West Middlesex University Hospital. Address: West Middlesex Hospital Twickenham Road Isleworth Middlesex TW7 6AF Telephone: 020 8321 6300 Fax: 020 8565 5438 Email: [email protected] Website: www.themulberrycentre.co.uk Areas covered: Boroughs of Ealing, Hammersmith & Fulham, Hounslow, Kingston upon Thames and Richmond upon Thames Services Information and support for cancer patients, their families, carers and friends, irrespective of where they live An information library with access to the internet, advocacy, yoga, tai chi and support groups Aromatherapy, massage and reflexology Counselling is free but limited to four or six sessions, depending on the therapy Contact: No referrals needed. Telephone, fax or email Monday to Friday. Cancer Resource Centre Provides information, support and complementary therapies for people with cancer, their families, friends and health professionals. Address: Woburn House 155 Falcon Road London SW11 2PD2 Telephone: 020 7924 3924 Fax: 020 7978 6505 Email: [email protected] Website: www.pauldauriacenter.org.uk Areas covered: London Services p7 Telephone support An information service A selection of complementary therapies that may be used alongside medical treatment, including counselling and massage, healing, yoga, relaxation, visualisation and art therapy Support groups Regular workshops and various publications available A home visiting service for Wandsworth and surrounding areas, with trained volunteers offering a choice of befriending, counselling, massage or healing Morning introductions to the Centre for health professionals every two or three months Maggie’s Cancer Caring Centre The Maggie’s centre, in the grounds of Charing Cross Hospital provides emotional, practical and social support to people with cancer, their families and friends. All services are drop-in and free. There are also various support groups, courses and activities running that may be of interest. Telephone or visit the website to check the current timetable. Address: Maggie’s Cancer Caring Centre Charing Cross Hospital Fulham Palace Road London W6 8RF Telephone: 020 7386 1750 Website: www.maggiescentres.org Areas covered: National Services Emotional support and practical help Support group meetings, activities and courses held regularly Guest speakers talking about medical and general topics People welcome to attend, regardless of where they have been receiving treatment Macmillan Cancer Information and Support Services at Charing Cross and Hammersmith hospitals These are drop-in services providing emotional and practical support. They are set in friendly, nonclinical environments in which people affected by cancer can discuss private needs with dedicated information professionals. The information centre on the ground floor of Charing Cross Hospital is open (except bank holidays) Monday and Friday 09.00-17.00; Tuesday, Wednesday, Thursday 09.00-16.00. Telephone: 020 3313 0171 The infopod on the ground floor of the Garry Weston Centre at Hammersmith Hospital is open (except bank holidays): Monday and Tuesday 09.00-17.00; Wednesday, Thursday, Friday 09.0016.00. Telephone: 020 8313 4248 p8 Macmillan Cancer Information and Support A national cancer charity supporting people with cancer and their families with specialist information, treatment and care. Address: 89 Albert Embankment London SE1 7UQ Telephone: 0808 808 00 00, Monday to Friday, 09.00 – 20.00 (freephone helpline) Website: www.macmillan.org.uk Areas covered: National Services A national information telephone helpline Specialist advice on treatment, symptom management and psychological support, from diagnosis onwards, by Macmillan doctors and Macmillan nurses Grants for people with cancer who are in financial need Colostomy Association Represents the interests of people with a colostomy. Offers expert advice about living with colostomy to all colostomates via personal contact with their volunteers. Address: 2 London Court East Street Reading RG1 4QL Telephone: 0118 939 1537 or +44 (0)118 939 1537 if outside UK (Monday to Friday, 09.00 – 17.00) Helpline: 0800 328 4257 (24/7) If you have any worries, please contact our 24-hour helpline. A colostomate will talk to you and listen to your concerns. Email: [email protected] The Colostomy Association receives no government funding and relies entirely on public generosity to fund its services – without you we simply cannot function. Registered charity no: 1113471 p9 The Ileostomy and Internal Pouch Support Group Helps people who have had their colon removed (ileostomy). It was started in 1956 by a group of people who had ileostomies themselves, together with some members of the medical profession. Address: Peverill House 1–5 Mill Road Ballyclare, Co. Antrim BT39 9DR Telephone: 0800 0184 724 (free) or 028 9334 4043 E-mail: Fax: 028 9332 4606 [email protected] Registered national charity no: 234472 Colorectal nursing team at St Mary’s Hospital Telephone: 020 3312 6560 Colorectal Nursing team at Charing Cross and Hammersmith hospitals Telephone: 020 3313 0860 We have put together a diary so you can keep a record of the doctors and nurses you have seen while you are in hospital and any investigations you have had. It will help us and you if you bring this booklet with you when you come to hospital to see a member of the team. If you are not able to fill it in yourself then you can ask a doctor or nurse to fill it in for you during your appointment. If you have a query about your forthcoming stay in hospital or any aspect of your care, please contact your nurse specialist. My nurse specialist’s name is ____________________________ Telephone ____________________________ My consultant’s name is ____________________________ p10 You may be asked to attend hospital for one or more of the following investigations. It would be helpful if you could make a note of the date and at which hospital the investigation was performed. Sometimes just one or two investigations are all that it is needed for the team to decide how best to treat your condition – do not worry if you only need to have one test. Investigation Done Date Which hospital? Yes / No Colonoscopy MRI scan CT scan PET scan Endorectal ultrasound Blood tests We look forward to meeting you again on your next visit to hospital. In the meantime, if you need any further information, please do not hesitate to contact the nurse specialist on 020 3313 0860. We aim to provide the best possible service and staff will be happy to answer any questions you may have. If you have any suggestions or comments about your visit, please either speak to a member of staff or contact the patient advice and liaison service (PALS) on 020 3133 0088 (Charing Cross and Hammersmith hospitals), 020 3312 7777 (St Mary’s Hospital), or email [email protected]. The PALS team are able to listen to your concerns, suggestions or queries and are often able to help sort out problems on behalf of patients. Alternatively, you may wish to express your concerns in writing to: The managing director Imperial College Healthcare NHS Trust Trust Headquarters The Bays, South Wharf Road London W2 1NY p11 Martina Cusack, colorectal nurse specialist Published: June 2004; October 2006; April 2011; April 2014 Review date: April 2016 Reference number: SCA/076/2011/VER4 © Imperial College Healthcare NHS Trust