Essex Cancer Network. South Essex. Patient information guide

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1 Essex Cancer Network South Essex Patient information guide

2

3 Contents Introduction p4 What is Cancer? A brief overview p6 Clinical Care of Patients p8 Diagnosis p9 The Multidisciplinary Team (MTD)p10 Treatment at Hospital / Cancer treatment centre p12 Surgery p12 Chemotherapy p12 Radiotherapy p12 Other Treatments p14 Clinical Trials p14 Leaving Hospital p15 Social Care for Cancer Patients p18 Social Services p18 Social Care Services Procedures p19 Practical Support at Home p19 Care in Residential/ Nursing Home p20 Funding for Care Services p20 Your Social Worker / Care Manager p22 Social Services in Hospital p22 Social Services Local Office Contact Details p23 Spiritual Support Services p25 Assistance with Travel to Health Service Appointments p26/31 Community Support for Carers p32 Financial Help and Guidance Local Community Support Services National Charities Offering Advice on Community Services Introduction to Emotional and Supportive Care Cancer and the Family The Importance of good Emotional Health Cancer Support Groups Directory of Support Services Other General Support National Voluntary / Statutory Groups Complementary therapies What is the Essex Cancer Network? Suggestions Comments Recommendations What to do if you are unhappy with your treatment or care Directory of terms used by health professionals Appendix 1 Appendix 2 p34 p37 p38 p42 p42 p44 p45 p47 p51 p54 p58 p64 p65 p66 p68 p77 p83 The Essex Cancer Network Patient & Carer information guide

4 South Essex Cancer Service Guide Dear Reader, If you are reading this then it is likely that you, or some one close to you, have received a diagnosis of cancer. As such you will probably be at a turning point in your life, with many mixed emotions making it difficult to see your way through what is ahead. This guide is intended for all patients and carers affected by cancer in South Essex and will help you to address your clinical, supportive or social care needs. It has been developed by members of the Southend, Rochford and Castle Point Cancer Services User Group and the Basildon & Thurrock Cancer Services User Group working with the Essex Cancer Network Partnership Group. The guide contains a great deal of general information, much of which may not be relevant to your specific circumstances. The authors have tried to provide as much information as possible. We do not intend that the guide is read from cover to cover, but that you refer to specific information as appropriate. It has been developed with the help and support of your local health professionals, specialists in the field of cancer treatment, local voluntary and support groups and, very importantly, the views and recommendations of local patients and carers. The information contained within the guide is subject to change and improvement and will be updated annually. We would therefore appreciate any suggestions, recommendations or comments with regard to the content of this guide. Please send your comments to the User Involvement Facilitator at the Essex Cancer Network at the address given opposite. 4 The Essex Cancer Network Patient & Carer information guide 2011

5 Your cancer care journey is personal to you. We trust that you will find this guide helpful and would like to take this opportunity, on behalf of everyone within the Cancer Network, to wish you well throughout your cancer experience. The Cancer Network would like to acknowledge the time and effort given by the following in the development of this document: Adrian Roberts, Harry Chandler, Nazira Visram (User representatives) Michael Scanes, Jill Butten (Essex Cancer Network) Roger Bassett Chair Southend Rochford & Castle Point Cancer Services User Group Cynthia Huyton Chair Basildon & Thurrock Cancer Services User Group Partnership Group Essex Cancer Network Swift House Hedgerows Business Park Colchester Road Chelmsford Essex CM2 5PF address: Telephone number: The Essex Cancer Network Patient & Carer information guide

6 What is Cancer? A Brief Overview All of the organs and tissues of the body are made up of microscopic cells which look and work differently depending upon their specific function. Cells have a certain life span, but can also become damaged (for example by an injury) and are constantly dying and being replaced by new cells. If this highly regulated process goes out of control for some reason, too many new cells are produced which produces lumps which are called tumours. Tumours can either be benign or malignant. Cancer is the name given to a malignant tumour. It is important to remember that cancer is not a single disease there are more than 200 different kinds of cancer, each with its own name and treatment. Cancer Cells Cancer cells are different to normal, healthy cells in several important ways: They continue to reproduce too quickly (that is before the old cells have died). They reproduce too early, before they are properly developed. This means that not only are there too many cells, but many are not able to function properly. As they multiply, they invade surrounding tissues and organs (local spread). They can also break free from the tumour and spread to other parts of the body where they cause 'secondary tumours'. This process is called 'metastases'. Different types of cancer often have typical routes in which they spread, but are still known by the organ of origin. For instance, if cervical cancer spreads to the lungs, it is called cervical cancer with lung secondary's (not lung cancer). 6 The Essex Cancer Network Patient & Carer information guide 2011

7 Benign Tumours The cells in benign tumours do not spread to other parts of the body and so are not cancerous. However, if they continue to grow at the original site, they may cause a problem by pressing on the surrounding organs. Types of Cancer Cancers can arise from any of the body's tissue and are named accordingly: Adenocarcinoma: cancer arising in one of the glands found in the lining of an organ. e.g. Adenocarcinoma of the colon or uterus Carcinoma: cancer arising in the epithelial tissue (skin or lining of the body's organs). The majority of cancers (85%) are carcinomas e.g. carcinoma of the stomach or lung Leukaemia: cancer of the white blood cells Lymphoma: cancer of the lymphatic system, e.g. Non-Hodgkin's lymphoma Myeloma: cancer of the plasma cells found in the bone marrow Sarcoma: cancer arising in connecting or supportive tissue such as bone, muscle, tendons and fatty tissue. e.g. osteosarcoma which is sarcoma of the bone (6% of cancers) Some cancers are named after the doctors who first described them e.g. Wilm's tumour: cancer of the kidney Hodgkin's disease: a type of lymphoma The Essex Cancer Network Patient & Carer information guide

8 Clinical Care of the Cancer Patient The diagram below outlines the care you experience through diagnosis, treatment, and aftercare. The Patient with / without symptoms GP / Health Centre Routine Screening Local Hospital or cancer centre for tests Cancer not diagnosed Diagnosis of cancer Treatments Palliative care Continuing treatment End of treatment Relapse Long term monitoring and follow up End of life care Cure Long term survival Diagram taken from 'The Cancer Guide': Macmillan Cancer Support 8 The Essex Cancer Network Patient & Carer information guide 2011

9 Diagnosis The results of the diagnostic tests you have had will enable the clinical team to agree a treatment plan for you. When sufficient information is available, all the key clinical personnel involved in your treatment will meet as a Multidisciplinary Team (MDT) to propose a treatment plan according to established clinical guidelines. The consultant will then invite you for a further outpatient appointment to review the results of all the diagnostic tests, and to present the recommended treatment plan agreed through the clinical team. This will be the time when you learn the full extent of your condition. You will be requested to review any treatment options and make a decision as to what you will accept in terms of treatments. When you and the responsible clinician have agreed to treatment, this will be scheduled according to the treatment plan and your GP informed. For rarer cancers it is possible that the consultant will recommend that you are treated in a specialist hospital (tertiary centre), as the local hospital does not have the appropriate capabilities, expertise or experience to treat you in optimal conditions. This will normally only be required for some rare or specialist cancer types or where specialist treatment is required, e.g. specialist surgery. You will be asked to accept treatment in a hospital with special skills, expertise and equipment, even though it may be some distance from your home. Depending upon individual circumstances, the local hospital will make arrangements for you to see a further specialist consultant at the tertiary centre who will examine you and decide on the course of treatment to be taken. You will be returned to your local hospital, once the specialist treatments or procedures have been completed. It is vital that your care is co-ordinated throughout treatment in secondary or tertiary care. It is a national requirement that all cancer patients are reviewed within a Multidisciplinary Team (MDT), who work together to plan and agree the treatment and care of every patient. The Essex Cancer Network Patient & Carer information guide

10 In the South Essex region services have been largely centralised in the cancer treatment centre at Southend Hospital. It is therefore quite likely that a patient from South West Essex may receive surgery in Basildon University Hospital, followed by Chemotherapy or Radiotherapy in Southend Hospital. Throughout your treatment plan you will be the responsibility of the same clinical team who work seamlessly across both hospitals. The Cancer Nurse Specialist (CNS) will usually be your key worker. The CNS has a very important role in providing the link between yourself and all the other people involved in your treatment and care whilst at the hospital. The Multidisciplinary Team (MDT) When you have a diagnosis of cancer, your case will be discussed at your hospital's appropriate Multidisciplinary Team (MDT) meeting. The Team usually meets every week to discuss all new cancer patients in their hospital and the continuing care of others. The Team is responsible for: Working out your treatment plan Deciding whether further tests are required Making appropriate referrals to specialist services Making sure the team has all the necessary members Collecting information and keeping good records. Each MDT has a set of core members with other specialists joining the team from time to time. The MDT is made up of people who are experts in different areas of medicine. Every team works by following national guidelines or rules on how they should work with each other, with your GP and with other specialist services. 10 The Essex Cancer Network Patient & Carer information guide 2011

11 A typical team may include: A Lead Clinician A Surgeon An Oncologist A Radiologist A Histopathologist A Clinical Nurse Specialist A Palliative Care Nurse An Administrator The Teams are there to ensure that you are given the same high standard of care and have the most appropriate investigations and treatments. Each team member is responsible for keeping up to date with changes in evidence-based research and new treatments and techniques. This ensures that everyone receives the best possible care, no matter where they live. When patients are treated at a specialist centre, the team at their local hospital consults with the team at the specialist centre by video conferencing facilities. This is known as a Specialist Multidisciplinary Team (SMDT). All patients who have undergone treatment for a cancer condition will be monitored and followed up regularly. Your cancer treatment is the responsibility of the hospital team, and your overall care is with your GP. Your GP will be kept informed by letters from your consultant, including the outcome of MDT discussions, whenever there is a change in your treatment or circumstances. The Essex Cancer Network Patient & Carer information guide

12 Treatment at Hospital / Cancer Treatment Centre Just as there are many types of cancer, so there are many forms of treatment. The three main forms of treatment used are surgery, chemotherapy and radiotherapy. Your treatment options will vary depending on the type and extent of the cancer. In all cases, the clinical team responsible for your care will set out a 'treatment plan' and this will be discussed with you so that you can understand what is proposed. This is important as, before any treatment starts, you will need to provide your consent to the treatment plan. Surgery Sometimes surgery will be required. This may be an operation to explore or remove all or part of the cancer. This will usually require you to be admitted to hospital. Before any operation, details will be discussed with you and you will be made aware of what the surgery will involve, and have an opportunity to ask any questions. You will be required to provide written consent to any surgical procedure. Increasingly certain cancers are operated on in designated surgical centres. Dependent on your specific surgical needs, you may be referred to a specialist surgical centre outside of South Essex. Chemotherapy Chemotherapy is a treatment with various drugs (called cytotoxic drugs) which destroy cancer cells. These drugs are usually either given by injection, a drip into a vein or sometimes by mouth. Most chemotherapy is given through an outpatients clinic, however occasionally the chemotherapy regime or your general state of health may require a short hospital stay. 12 The Essex Cancer Network Patient & Carer information guide 2011

13 If chemotherapy is recommended, you will be advised of all aspects of your particular chemotherapy treatment. You will be told how often you will have treatment and any possible side effects will be discussed with you. There are medicines available which can help reduce these side effects should they occur. Most chemotherapy for the South Essex adult population is given at Southend Cancer Centre, with some Haematology cancer chemotherapy given at Basildon Hospital. A number of patients with rare cancer may be treated at specialist cancer centres outside South Essex, e.g. St. Bartholomew's Hospital (Barts) Radiotherapy Radiotherapy uses high energy beams to target very specific areas of the body. The aim is to destroy diseased cells with minimum damage to healthy tissue. Radiotherapy treatments are normally provided as an outpatient in a clinic, but as with chemotherapy, a short hospital stay may be advised dependent upon your specific circumstances. The treatments are painless (just like having an ordinary chest x-ray) and can last anything from a few seconds to several minutes. Radiotherapy is normally given as a number of small treatments, perhaps up to five days a week, for between one and six weeks. Side effects from radiotherapy will depend on the area of the body being treated and the specific treatment regime used. The radiotherapist, clinician or CNS will discuss the likely side effects of treatment with you. In most cases radiotherapy will not make you radioactive and you can safely mix with people, including children, at any time. The Essex Cancer Network Patient & Carer information guide

14 There are some treatments however which will make you radioactive for a short period. In this instance you will be fully informed of the precautions you must take. Brachytherapy, in which seeds of radioactive materials are implanted into the affected organ providing a higher dosage than is possible with external beam radiotherapy, is also provided in Southend Hospital. All South Essex patients are served by the Radiotherapy Centre at Southend Hospital as Basildon Hospital does not have Radiotherapy facilities. Other Treatments Depending on your specific circumstances, you may need other types of treatment. These could include blood transfusions, physiotherapy or various drug or hormone therapies. Treatments can vary between person to person even when they have the same type of cancer, e.g. some blood disorders need bone marrow transplants. All treatments will be discussed and agreed with you before the treatment commences. Clinical Trials Many treatments for cancer form part of what is known as a clinical trial. Clinical trials are research studies involving patients which compare different types of medical care. Results from clinical trials have allowed treatments and medicines to be improved based on scientific evidence. Patients are often asked to join a clinical trial. This does not mean that you will be given experimental treatment. The treatment you receive will be based on the most up-to-date treatments available at the time. When asked to join a clinical trial you can choose whether or not to take part. If you choose not to enter a study it will NOT be 14 The Essex Cancer Network Patient & Carer information guide 2011

15 detrimental to your care. Written consent is a pre-requirement of all trials and you must have all relevant details of the trial explained to you before your consent is requested. Leaving Hospital Treatment at Home by the Primary Health Care Team When you return home from hospital, your GP will be in contact with your hospital consultant and can organise support from district nurses and health visitors as required. Additionally, you may be able to get help from other voluntary agencies dependent upon circumstances. The GP/CNS will be able to offer advice. Who should I contact if I feel unwell after leaving hospital? If you are currently undergoing a course of treatment under the care of a hospital ward/department, you will be given the name and contact details of your Key Worker. This will normally be your CNS. If you have any questions or need information or support you should contact the Key Worker. If you are undergoing a course of Chemotherapy, you will be advised of possible side effects. You will be given a small credit card sized alert card which you should carry at all times. This will make the Out of Hours service, the emergency services and A&E departments aware of your condition. You will also be given a Chemotherapy record booklet, which will provide the above services with details of your treatment and any medication you are receiving. The Essex Cancer Network Patient & Carer information guide

16 What about Further Treatment? Medication - You will be given sufficient medication for two to six weeks. Further supplies should be obtained through your GP in the normal way. Nursing/Social Care - The hospital works closely with Primary Care Trusts (PCTs) and Social Services Departments to make sure that: The district nurse visits you to review and assess your treatment. This may vary from that which was received whilst in hospital. Any social-care needs are established and in place. Disability through Cancer and Cancer Treatments Cancer Patients are now classified as disabled and you should be eligible for a disability/parking badge (blue badge). You should contact your Key Worker /GP for advice. Fitness to Drive If you are unfit to drive for more than three months you must let the Driver & Vehicle Licensing Centre know. You should contact your GP for advice. Language/Disability Support and Interpretation Should you need help with speaking, hearing or communicating you should advise your GP, who can arrange for an interpreter or appropriate support in order to help you communicate about your treatment and wishes. 16 The Essex Cancer Network Patient & Carer information guide 2011

17 South Essex Cancer Service Guide Chapter 2 Community and Social Care The Essex Cancer Network Patient & Carer information guide

18 Social Care for Cancer Patients Information provided in this booklet is subject to change and should be checked for accuracy with the Social Service department of your local council. The majority of you receiving a cancer diagnosis will never have the need of social care services. Most of you, with the help of family and friends, will be able to maintain a normal, if slightly restricted, lifestyle throughout your treatment, and the course of the disease. For some of you, however, especially if you are more physically frail or living on your own with perhaps only limited family support, there may be a need for some social care services. In this chapter we will provide a brief description of the social care services which are generally available through the Social Services departments of your local council. Other people that would be eligible for consideration for services are those who have a physical, or a sensory impairment as a result of their disease, either on a temporary or permanent basis. Also unpaid carers who are informally providing personal assistance, or other support, for another person on a regular and substantial basis. Carers are entitled to an assessment of their own individual needs for support services. Social Services Social Services offer different types of help to people who meet certain criteria. Help may take the form of information, advice or services to help people at home, in residential homes or in nursing homes. Social Services are arranged by your council and they aim to meet the needs of people from all communities. A financial charge may be made for some services. 18 The Essex Cancer Network Patient & Carer information guide 2011

19 Social Care Services Procedures You have a right to an assessment of your social care needs, (and a right to a copy of this assessment). Equally, someone caring for you also has a right to request an assessment of your needs. This assessment will try to identify what you need at a specific time. Should your needs change you will need a further review/assessment, as changes in circumstances cannot be predicted in advance. If a need is identified your social worker/care manager will try to ascertain, in discussion with you, the priority of meeting this need. All local authorities use national guidance to determine needs as defined within the Fair Access to Care Services (FACS). A need can be judged to be critical, substantial, moderate or low: Critical Need: Substantial Need: Moderate Need: Low Need: A risk of serious physical or psychological harm which has, or is likely to occur without action being taken. Physical, or psychological harm, which has, or is likely to occur, and without action is likely to become a critical need. No immediate risk to health and safety. No present risk to health and safety. Practical Support at Home If you meet certain criteria different services can be arranged. Examples of care services may include personal care, such as washing, dressing, assistance with toileting, transferring /mobilising safely, getting in and out of bed, assistance with meals and drinks, and perhaps day care, particularly where there is a carer in need of respite. continued The Essex Cancer Network Patient & Carer information guide

20 In some cases household tasks can be undertaken, but only if they represent a critical, or substantial need which can be hard to argue. Alternatively, Age Concern operates a home support service, as do other private agencies, which can provide assistance with household tasks. There may be limited choice as to which agencies provide care in your home especially if it is partially funded by Social Services, due to the contractual arrangements entered into by your local council and the local care providers. In this instance you may wish to consider the option of receiving a 'Direct Payment'. Under this scheme the local authority pays its agreed financial contribution towards your care directly to you, in order that you may employ someone, (not usually a family member), to provide care. The scheme is audited but there are agencies able to assist you, free of charge, in managing your direct payments. Care in a Residential/Nursing Home If your assessment should indicate that you require care in either a residential or nursing home, either temporarily or permanently, under social service provision, then you may not be able to access the preferred choice of home, or it may not always be local. Your social worker/care manager will always consider your needs as paramount, but may be working with limited resources. They will always try to meet your needs in the way that best suits. Of course you or your family can always arrange to have the care provided by the home of choice, by agreeing to a private arrangement for which you will have to pay. Funding for Care Services It is important to stress that ALL services are subject to a financial assessment. The individual who will be receiving the services will be asked to complete a financial assessment form. (Your social worker/care manager can request that someone assists in completing this as necessary. This can be particularly useful as they can also offer 20 The Essex Cancer Network Patient & Carer information guide 2011

21 advice regarding benefit entitlement). If you think you may need assistance, application may be made for Attendance Allowance or Disability Living Allowance. These are non-means tested benefits paid to people requiring assistance. It is also possible that someone who is caring for you may be entitled to a Carer's Allowance. For more advice on potential benefit entitlements you should contact the Department of Work and Pensions (DWP) on their helpline. (See section 2 page 12) The financial assessment form will consider your individual income and outgoings, and will try to ascertain a fair charge for you to contribute towards your care package. In some cases it is possible that no charge will be made where you cannot afford to make a contribution. For others, it is possible that there will be a charge for the full cost of the care services required. In this instance you may decide to organise your care privately. After assessment you will receive notification of your assessed charge promptly and your social worker/care manager will be able to provide information on the options available. Should you not want to complete the financial assessment, you can decide to Non-Disclose, but in this instance will be charged the full cost of your care services. These charges are made only for social care. If you are judged to require the services of a qualified nurse then there is a free entitlement for nursing care. In this case an assessment of your nursing needs is carried out, and a payment made to the nursing home to cover the 'nursing care'. You will be expected, (where able to do so), to pay a contribution towards the cost of social care, even in a nursing environment. The Essex Cancer Network Patient & Carer information guide

22 Your Social Worker / Care Manager Your social worker and care manager are there to help negotiate the complexities of arranging care services. It is important that you are open and honest about what you feel is required and why, so that the service that most closely meets these requirements can be provided. If you experience any difficulties in accessing appropriate care services there is a formal complaints procedure, which will attempt to resolve any problems that may arise. Discuss any complaint initially with the Corporate Complaints/Compliments Manager at Essex County Council, (telephone ). The Unitary Authorities of Thurrock and Southend may have their own procedures for handling complaints. Your local Care Manager will be able to offer advice. Social Services in Hospital Social Services are provided according to national standards and are the responsibility of the local council. Within South Essex this responsibility is with Essex Country Council unless you reside in either of the Unitary Authorities of Thurrock or Southend. To make it easier some Social Workers (Care Managers) are based in the main hospitals in South Essex. You can contact a social worker by asking a member of staff or by calling your hospital switchboard. If you think you will need help at home when leaving hospital, a member of staff should be asked to contact a social worker on your behalf. They will come to see you and assess your needs. 22 The Essex Cancer Network Patient & Carer information guide 2011

23 Social Services Local Office Contact Details If you would like advice and information about the services, or would like to ask for an assessment, you should contact the daytime helpline number: Helpline: Telephone: or If you reside in Thurrock or Southend, please contact the local council offices at the relevant address/telephone number listed below. You can ask for help, advice or information for yourself, for someone in your family or for a friend or neighbour. If you are phoning on behalf of someone else you should get their permission first. A wide range of information leaflets on local social services is available. The information contained in social services leaflets can also be made available in alternative formats: large print, Braille, audio tape or disk and translations. Please telephone: If you would like further information or advice on social services or literature, please contact your local Social Services Reception. Addresses and telephone numbers are listed over on page 24. The Essex Cancer Network Patient & Carer information guide

24 Basildon Local Office Ely House, Ely Way Basildon, Essex SS14 2BQ Telephone: Fax: Brentwood Local Office Coptfold House, 2 New Road Brentwood, Essex CM14 2BU Telephone: Fax: Castle Point Borough Council Kiln Road, Thundersley Benfleet, Essex SS7 1TF Telephone: Fax: Southend-on-Sea Borough Council, Civic Centre Victoria Avenue. Southend-on-Sea, Essex SS2 6ER Thurrock Local Office Civic Offices, New Road, Grays, Essex RM17 6TJ Telephone: Telephone: (Textphone) Fax: Social Services General Enquiries Telephone: Social Services Emergency Duty Team (out of hours) Telephone: (textphone: ) Essex Social Services: Telephone: Emergency Contact Details for Essex Social Services In an emergency (where a situation is urgent and cannot wait until the next working day) between the hours of 5.30pm (4.30pm on Friday) and 9.00am, or at weekends and Bank Holidays, please contact: Telephone: Southend Emergency Duty Team (Social Services) Telephone: Out of Hours: Textphone: The Essex Cancer Network Patient & Carer information guide 2011

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