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Essex Cancer Network South Essex Patient information guide Contents Introduction p4 Financial Help and Guidance p34 What is Cancer? – A brief overview p6 Local Community Support Services p37 Clinical Care of Patients p8 Diagnosis p9 National Charities Offering Advice on Community Services p38 Introduction to Emotional and Supportive Care p42 Cancer and the Family p42 The Multidisciplinary Team (MTD)p10 Treatment at Hospital / Cancer treatment centre p12 Surgery p12 Chemotherapy p12 The Importance of good Emotional Health p44 Radiotherapy p12 Cancer Support Groups p45 Other Treatments p14 Directory of Support Services p47 Clinical Trials p14 Other General Support p51 Leaving Hospital p15 Social Care for Cancer Patients p18 National Voluntary / Statutory Groups p54 Social Services p18 Complementary therapies p58 What is the Essex Cancer Network? p64 Suggestions Comments Recommendations p65 What to do if you are unhappy with your treatment or care p66 p68 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 Directory of terms used by health professionals Social Services Local Office Contact Details p23 Appendix 1 p77 Spiritual Support Services p25 Appendix 2 p83 Assistance with Travel to Health Service Appointments p26/31 Community Support for Carers p32 The Essex Cancer Network – Patient & Carer information guide 2011 3 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 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 Email address: [email protected] Telephone number: 01245 397618 The Essex Cancer Network – Patient & Carer information guide 2011 5 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 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 2011 7 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 Cure End of life care Long term survival Diagram taken from 'The Cancer Guide': Macmillan Cancer Support 8 The Essex Cancer Network – Patient & Carer information guide 2011 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 2011 9 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 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 2011 11 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 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 2011 13 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 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 2011 15 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 South Essex Cancer Service Guide Chapter 2 Community and Social Care The Essex Cancer Network – Patient & Carer information guide 2011 17 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 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: A risk of serious physical or psychological harm which has, or is likely to occur without action being taken. Substantial Need: Physical, or psychological harm, which has, or is likely to occur, and without action is likely to become a critical need. Moderate Need: No immediate risk to health and safety. Low Need: 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 2011 19 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 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 2011 21 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 - 0845 7430430). 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 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: 0845 603 7630 or e-mail: [email protected] 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: 01245 431134. 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 2011 23 Basildon Local Office Ely House, Ely Way Basildon, Essex SS14 2BQ Telephone: 0845 6037630 Fax: 01268 643346 www.essexcc.gov.uk Brentwood Local Office Coptfold House, 2 New Road Brentwood, Essex CM14 2BU Telephone: 0845 6037630 Fax: 01277 239186 www.essexcc.gov.uk Castle Point Borough Council Kiln Road, Thundersley Benfleet, Essex SS7 1TF Telephone: 01268 882200 Fax: 01268 882455 www.essexcc.gov.uk 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: 01375 390000 Telephone: 01375 652652 (Textphone) Fax: 01375 952359 www.thurrock.gov.uk 24 Social Services General Enquiries Telephone: 01702 534646 Social Services Emergency Duty Team (out of hours) Telephone: 0845 606 1212 (textphone: 01245 492154) www.southend.gov.uk Essex Social Services: Telephone: 0845 6037630 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: 0845 6061212 Southend Emergency Duty Team (Social Services) Telephone: 01702 534646 Out of Hours: 0845 6061212 Textphone: 01245 492154 www.southend.gov.uk The Essex Cancer Network – Patient & Carer information guide 2011 Spiritual Support Services When diagnosed with cancer many of you will find yourselves asking about the meaning of your life. For some this may lead to enhanced knowledge of religious and spiritual organisations, many of whom are very willing to offer support to those of you going through this experience. The number and range of such spiritual organisations is too complex to be listed in this guide. It is recommended that you seek out spiritual support according to your own beliefs and conscience. The Hospital Chaplin service may be able to provide advice. The Essex Cancer Network – Patient & Carer information guide 2011 25 Assistance with Travel to Health Service Appointments Travel by Ambulance - Basildon and Southend Hospitals Non-urgent ambulance transport is available for the following eligible patients: • Those attending for diagnostic testing • Those attending hospital outpatient appointments • Those requiring admission to or discharge from hospital. Who Can Use the Service? So that the best possible use is made of ambulance transport your GP or hospital doctor will need to confirm that one or more of the following situations apply to you: • Your condition could deteriorate with little or no warning • You are unable to walk and/or the doctor says you cannot use public transport or a private taxi • Your treatment does not allow you to travel on public transport or in a private taxi • Your mobility requires the presence of an ambulance person to care for you You cannot get ambulance transport simply because the journey you need to make is complicated, long or inconvenient. 26 The Essex Cancer Network – Patient & Carer information guide 2011 Carers Transport by ambulance can only be provided to individuals with a genuine need. Unless your carer is essential for your safety, or treatment on the journey, they cannot travel with you in the ambulance. You should arrange for your carer to meet you at the hospital or at home. East of England Ambulance Service Ambulance Headquarters - Chelmsford Broomfield, Chelmsford Essex CM1 7WS PALS - East of England Ambulance Service, Chelmsford Telephone: 0800 028 3021 Useful numbers for Ambulance Transport Offices:Basildon/Orsett Hospital Telephone: 01268 592287 Southend Hospital Telephone: 01702 385389 or 385099 Broomfield Hospital Telephone: 01245 514614 The Essex Cancer Network – Patient & Carer information guide 2011 27 Other Transport Services A list of transport services and contact details follow:Services to Southend Hospital Age Concern 01702 215780 / 215781 Lower Ground Floor Civic Centre Victoria Avenue Southend-on-Sea Essex SS2 6ER Chelmsford office: 01245 264499 Email: [email protected] www.acsos.ble.org.uk Covers local areas except Canvey. Chelmsford office supports the Canvey area. Fare chargeable per mile. Prefer seven days' notice. Castle Point Social Care Scheme Ltd Tyrells Centre, Seamore Avenue, Thundersley, Benfleet Essex SS7 4EX 01268 638411 Mon-Fri: 9am-1pm Email: info@castlepointcarscheme. co. uk 28 Dial-a-Ride Civic Centre, Victoria Avenue Southend-on-Sea, Essex SS2 6ER 01702 215666 / 5 Operates in the Southend and Castle Point areas (not Rochford they run a voucher scheme). For people with difficulties shopping and hospital visiting, but not appointments. Two days notice required. Charge made. Must be registered with Dial-a-Ride first. Essex Ambulance Transport Southend Hospital 01702 435555 x2341 (Outpatients) Ring x2183 for cancellations or to check bookings Must be booked via GP or hospital consultant. Require two days' notice. Essex Disabled Peoples' Association 90 Broomfield Road Chelmsford Essex CM1 1SS Must be in receipt of a meanstested benefit and be wheelchair or scooter dependant. Voucher scheme, does not cover Rochford as they operate their own scheme. Vouchers used for taxis. The Essex Cancer Network – Patient & Carer information guide 2011 Give-A-Lift Based at SAVS centre, Southend 01702 393933 (SAVS) 01702 347965 Mon/Tues/Weds; 01702 473634 Thurs-Sun; Email: [email protected] For elderly/infirm patients having difficulty using public transport. Fare per mile chargeable (39p per mile). Require few days' notice. Will cover London. Helping Hands 1 The Cedars Great Wakering Essex SS3 0AQ 01702 219395 Helpline: 01702 219036 (manned 9.30am – 4.30pm) Only for patients living within Great and Little Wakering area who need help. Any age. Donations to cover costs. Mayday Mobile Civic Suite 2 Hockley Road Rayleigh Essex SS6 8EA 01268 778555 Email: [email protected] Covers Rochford, Hullbridge, Hockley, Rayleigh. For disabled/infirm etc. One week's notice required. Donations to cover costs. Transport for Chemotherapy/ Radiotherapy Patients A small team of voluntary drivers take patients to and from both the Chemotherapy and Radiotherapy department. Areas covered include Southend, Basildon, Wickford and occasionally slightly further a field. The outpatient service times are Monday to Friday 8.30am - 6.30pm, Carecars This is a volunteer service if you have difficulty using public transport to travel to/from Southend Hospital for your appointments. Available Monday to Friday, 9.00am - 4.00pm. Day Assessment Unit Southend Hospital They currently have a small team of drivers who transport you to your home after your appointments to reduce waiting times in the departure lounge. The Essex Cancer Network – Patient & Carer information guide 2011 29 Parking - Southend Hospital Southend Hospital provides a five day pass for free parking in the Tower Block car park for individuals receiving chemotherapy or radiotherapy. To claim you need to contact the General Office, located inside the old main entrance, between 9.00am - 5.00pm Monday to Thursday, or 9.00am - 4.30pm on Friday. The five days include weekends so passes are issued on a Friday for use starting Monday. Help with Travel Expenses Southend Hospital If you receive Income Support, Income based Job Seekers' Allowance, Guaranteed Pension Credit, Working Tax Credit and/or Child Tax Credit you may be entitled to help with your travel costs to and from the hospital. You will need to bring a bus, train or parking ticket and your appointment card plus proof of entitlement. If you would like further information, contact Macmillan on 01268 448517 or PALS 30 Services to Basildon Hospital Ambulance Transport to Basildon Hospital Transport by ambulance to and from Basildon Hospital is subject to the conditions described on page 26. The same restrictions apply for the transport of carers by ambulance. Car Parking at Basildon Hospital A large multi-storey car park is available. There is concessionary free parking for cancer patients Car parking areas for disabled persons are located outside the Outpatient Department and the main entrance. There are "dropoff" only areas outside the A&E Department and the Maternity Unit. Taxi 'Phone A direct line taxi 'phone is available in the hospital near to the reception desk. The call is free. The Essex Cancer Network – Patient & Carer information guide 2011 Help with Travel Expenses Basildon Hospital If you receive Income Support, Income Based Job Seekers' Allowance, Guaranteed Pension Credit, Working Tax Credit and/or Child Tax Credit; you may be entitled to help with your travel costs to and from the hospital. If you would like further information contact the Cashier's Office at Basildon Hospital on Telephone: 01268 593606. All claims should be submitted on the day you attended the hospital, unless the appointment is after the General Office has closed. Backdated claims will take longer to settle as checks must be made to verify claims. Please Note: 1. Claims over three months old will not be reimbursed. All claims must be submitted with the following: 2. Payments will only be made for journeys to and from your normal place of residence. 1. Proof of attendance or requirement to attend for treatment. 3. Further information on NHS hospital travel costs scheme is available in leaflet HC11. 2. Proof of Patient's entitlement, i.e. Income Support etc. 4. Visitors claiming fares must apply to DSS local office (Form SF300). 3. A receipt to cover expenditure (i.e. bus or train ticket). Only in exceptional circumstances will taxi fares be paid, and these claims must be accompanied by a doctor's letter (your GP may make a charge for this which is nonrefundable). 4. A valid car parking ticket, if applicable. Car parking charge will only be refunded on day of attendance. The Essex Cancer Network – Patient & Carer information guide 2011 31 Community Support for Carers Caring for Yourself Looking after someone with cancer can be very difficult. You may find it physically, emotionally and mentally exhausting as well as a drain on your financial resources. Coming to terms with being a carer may take time and require much re-adjustment. It is likely to be emotionally challenging and can lead to exhaustion, with tiredness and sleeping badly affecting your ability to cope. If you are caring for someone it is important that you consider your own health needs, as well as those of the cancer patient. If you feel you need support consider talking things through with your GP. He can provide medication that will help you cope with the current circumstances or he may direct you to other support services such as counselling or local support groups. Carers Support - Useful Telephone Numbers/Web Addresses The Essex Cancer Network is not responsible for the contents of these websites and does not necessarily endorse the views expressed within them. Listings shall not be taken as endorsement of any kind. We cannot guarantee that links will work all the time and we have no control over the availability or content of linked pages. Carers Information Telephone: 01785 606675 www.carersinformation.org.uk CarersUK Telephone: 0808 808 7777 www.carersuk.org.uk 32 The Essex Cancer Network – Patient & Carer information guide 2011 The Cancer Counselling Trust Telephone: 020 7704 1137 www.cancercounselling.org.uk Princess Royal Trust Carers' Centres www.carers.org.uk Crossroads - Caring for Carers National Helpline: 0845 450 0350 www.crossroads.org.uk Parent Carers Working Families Telephone: 0800 013 0313 Advice on balancing work and caring www.workingfamilies.org.uk Careline Basildon Careline and Southend Careline provide an emergency care alarm service. A small fee applies. Basildon Southend Telephone: 01268 294477 Telephone: 01702 236195 The Essex Cancer Network – Patient & Carer information guide 2011 33 Financial Help, Advice and Guidance If, because of your illness, your income has gone down or you need financial help the following organisations should be able to advise you. Macmillan Welfare Benefits Advice Service for South Essex Can provide help with people living with cancer, their carers and families with: • • • • Getting the right benefits Filling in forms Grant applications Appealing against benefit decisions Call their advice line on 01268 448517 Mondays to Fridays 9.00am to 4.00pm (excluding Bank Holidays) for free confidential advice or to arrange an appointment to go and see one of their advisors. Department of Works and Pensions Provides state benefits, grants and loans. Please contact your local office. You will find their number listed in your local telephone directory under The Department of Works and Pensions. (Any benefit you receive will be dated from the day you ring). For general advice about benefits contact: National Disability Benefits Enquiry Line Telephone: 0800 82200. The Pension Service Telephone: 0845 6060265. Specially trained staff can help with filling in claims forms over the telephone. Telephone: 0800 441144. 34 The Essex Cancer Network – Patient & Carer information guide 2011 The Citizens Advice Bureau Telephone: 0870 1264042 Financial and legal advice as well as debt counselling and practical assistance to people living in Essex: Southend: Telephone: 01702 610610 Thurrock: Telephone: 0870 126 4034 Brentwood: Telephone: 01277 222888 Castle Point: Telephone: 01268 511889 Basildon: Telephone: 01268 522210 Canvey Island: Telephone: 01268 511889 Rochford: Telephone: 01702 545552 Wickford : Telephone: 01268 732094 www.nacab.org.uk Age Concern Age Concern has many offices throughout Essex. The information line can arrange for written information and resource packs to be sent out. Telephone: 0800 009966 www.ageconcern.org.uk The Essex Cancer Network – Patient & Carer information guide 2011 35 Macmillan Benefits Advice Line Provides free phone advice on benefits including Macmillan grants - a charitable grant for patients who need financial support either to purchase an item such as equipment to enable them to stay at home or clothing needed due to weight loss. They may also apply for a lump sum to help crisis debt. All cases are assessed on an individual basis. Telephone: 0800 500 800 Impact Financial advice on an appointment basis either in your own home or office based in Basildon or Thurrock. Telephone: 01268 553553 Soldiers Sailors Airmen Families Association Forces Help (SSAFA) Are able to give advice to ex-service men and women. Local Office: Telephone: 01206 764114 National Office: Telephone: 020 7403 8783 General enquiries: Telephone: 0845 1300795 They also have a website: www.ssafa.org.uk. Prescriptions All Cancer patients are now entitled to free prescriptions. For further information and an exemption certificate contact your GP or local pharmacist. 36 The Essex Cancer Network – Patient & Carer information guide 2011 Other Local Community Support Services BDVC Basildon District Volunteer Carers Telephone: 01268 294235 9.00am - 4.00pm Low cost door to door transport service for those unable to access public transport. 01268 294418/9 Toenail cutting service either at home or at a clinic, small contribution required. 01268 294334 Age Concern Telephone: 01268 288839 Provide support and advice to the elderly including practical support such as providing equipment and help with housework, shopping etc. Cinnamon Trust Telephone: 01736 757900 Provides practical support for the elderly and terminally ill with any aspect of day to day care of their pets, including long term care Chiropody Telephone: 01379 364465 Provide home and clinic service on an appointment basis Volunteer escorts push elderly persons confined to a wheelchair around Basildon Town Centre. The service is provided free. 01268 294235 Free wheelchair loan service for short term only. A refundable deposit is required. 01268 294235 Volunteer visitors provide free visiting for friendly chat or to help fill in forms. 01268 294235 The Essex Cancer Network – Patient & Carer information guide 2011 37 National Charities Offering Advice on Community Services The Essex Cancer Network is not responsible for the contents of these websites and does not necessarily endorse the views expressed within them. Listings shall not be taken as endorsement of any kind. We cannot guarantee that links will work all the time and we have no control over the availability or content of linked pages. General Information on Cancer Macmillan Helpline (For Information, Support and Advice) Telephone: 0808 808 0000 www.macmillan.org.uk Marie Curie Cancer Care Telephone: 020 7599 7777 www.mariecurie.org.uk Older people Age Concern Telephone: 0800 009966 www.ageconcern.org.uk Help the Aged Telephone: 0207 278 1114 www.helptheaged.org.uk Counsel and Care Telephone: 0845 300 7585 www.counselandcare.org.uk Children ACT Telephone: 0117 922 1556 www.act.org.uk 38 The Essex Cancer Network – Patient & Carer information guide 2011 Bereavement Travel Insurance Cruse Telephone: 0870 167 1677 and also 0845 758 5565 www.crusebereavementcare.org.uk Cancer Patients Having Difficulty Getting Travel Insurance Contact Macmillan Helpline: 0808 808 0000 Or visit their web site: www.macmillan.org.uk Macmillan Dove Bereavement Service A support service for adults including young adults. Can provide one-to-one or group counselling for pre and post bereavement. Telephone: 01268 524973 Ext 210 St Luke's Children in Bereavement A support service for children aged 7 - 14, providing one to one counselling and group weekend activities with support. Can also provide telephone advice for children of all ages. The Essex Cancer Network – Patient & Carer information guide 2011 39 40 The Essex Cancer Network – Patient & Carer information guide 2011 South Essex Cancer Service Guide Chapter 3 Emotional and Supportive Care The Essex Cancer Network – Patient & Carer information guide 2011 41 Introduction to Emotional and Supportive Care The following information on emotional and support services has been collated from sources available within South Essex. The groups listed offer many different types of support aimed at the needs of people affected by cancer at different stages within their cancer pathway. Thus some groups will be optimised towards supporting patients with a high confidence of cure, whilst others will specialise in helping palliative patients and their families. It is therefore important that each patient reflects on their current disease status, and their individual emotional needs when accessing the information. If you approach any group, and find that they do not meet your specific needs, or that you do not feel welcome, then try contacting alternative groups. Remember that no group can solve all your problems or give you all the answers. You are ultimately the only one who has control over your emotional health. The support groups can help you navigate the difficulties that you are facing, will offer advice and a listening ear but they cannot live your life for you, nor take away all the pain. Cancer and the Family In the ideal world every cancer patient would have the loving support of their family and friends to help them through their cancer journey. Unfortunately, in our current culture, families are often geographically distant and the demands on their time are so great as to make caring for someone close to them very difficult. The demands of a long term health condition and the extensive treatments offered therefore impose considerable stress on the family unit, and may force changes to the family lifestyle. Many patients would agree that the worst part of dealing with their disease is, in fact the interactions with their nearest and dearest as these are so emotionally charged. It is normal to want to protect your 42 The Essex Cancer Network – Patient & Carer information guide 2011 family from the emotional turmoil that you yourself are going through, especially when they are having an equally difficult time dealing with the cancer diagnosis and its effect upon their lives. Each family member is likely to go through similar emotional states and in their own time. Thus it is possible for a patient to be angry at the same time as their partner is depressed; this is a recipe for ill feelings if the family does not have good communications, and an understanding of the complexity of the emotional minefield that they are navigating together. Young people can be very sensitive to an emotional atmosphere which, perhaps, an adult would not even be aware of. Engaging with the children sensitively on what is the current situation, and what are the potential future threats, is essential. This needs to be done sympathetically and may require the help of experienced counsellors. Many of the national cancer charities will be able to provide advice on how best to help children deal with cancer within the family. The Essex Cancer Network – Patient & Carer information guide 2011 43 The Importance of Good Emotional Health A cancer diagnosis will often cause you to reflect on your life. For many this starts an assessment of what is really important. This may lead to changes in personal priorities and improvement in relationships both within the family, and with everyone with whom you interact. It may lead to a better life balance with a greater appreciation of health and wellbeing and life in general. For most patients, and their carers, the point at which cancer is diagnosed is similar to bereavement. Their lives have been changed in an instant; they are no longer in control and their plans for the future become less certain. It is important to recognise the effect of these changes on your emotions, and the need to deal effectively with these negative feelings in order to remain as positive as possible. It is generally recognised that you may experience some of the following emotional states after bereavement, or a potentially life threatening diagnosis but not necessarily in this order:• First Stage Denial and Isolation • Second Stage Anger/Fear • Third Stage Bargaining/Guilt • Fourth Stage Depression • Fifth Stage Acceptance When you recognise the role of the mind in the health of the body, you are aware of the need to promote a positive emotional state, irrespective of the current status of your physical disease. This has been recognised for cancer patients probably more so than for any other life threatening, long term health condition, in the amount of support services that are available to the cancer patient. 44 The Essex Cancer Network – Patient & Carer information guide 2011 Cancer Support Groups Over recent years, groups have been set up to provide extra support for people affected by cancer. Often they have been started by individuals who believe they would have benefited from more support during or after treatment. Support groups provide the opportunity for people to talk about their experiences and share information, and to direct patients to other areas of support. These groups often consist of people who have experience of several types of cancer and most forms of treatment. They give you the chance to meet others affected by cancer and to support each other through difficult circumstances. Many groups offer the opportunity to speak to someone on a one-to-one basis over the phone or in person. They may also be a way of participating in social activities in a safe environment whilst undergoing treatment. Some people find it helpful to attend a regular support group, while others find them useful for just a short time. There are different types of groups. Some are informal gatherings while others are more structured. Some support groups provide a largely clinical environment, often run in conjunction with the specialist nurses at the hospital where you are having treatment. These are able to answer your questions relating to your specific type of cancer and the treatments that you will receive. They also serve the valuable role of introducing the patient to others that have had, or are currently experiencing, similar treatments. Strong bonds of friendship often result from these informal gatherings. Health professionals recognise the benefits of attending cancer support groups. Other support groups prefer to distance themselves from the more clinical aspects and concentrate on emotional support. These groups can vary from those that have an extensive range of therapies available, through to those that organise regular social events and outings, right down to those with just a few people who are prepared to give their time to listen to patients over a cup of tea. The Essex Cancer Network – Patient & Carer information guide 2011 45 The choice of which type of group you may wish to attend, or whether you wish to attend any, is a subject to which you should give some thought, and depends purely on your own personal circumstances. In particular, if you do not have an extensive support system within your family and friends, you should be encouraged to seek out a suitable group. 46 The Essex Cancer Network – Patient & Carer information guide 2011 Directory of Support Services The Essex Cancer Network is not responsible for the contents of these websites and does not necessarily endorse the views expressed within them. Listings shall not be taken as endorsement of any kind. We cannot guarantee that links will work all the time and we have no control over the availability or content of linked pages. Local Support Groups Within South Essex Breast Bosom Friends (Basildon) Meet at Basildon United Reform Church Hall, Honeypot Lane 2nd Tuesday evening of every month 7.00pm - 9.00pm 3rd Tuesday afternoon of every month 1.00pm - 3.00pm Contact: Karen Duncombe, Basildon and Thurrock University Hospitals NHS Foundation Trust. Email: [email protected] Telephone: 01268 598146 Bosom Pals (Southend) Meet at Stables, Chalkwell, Park Drive, Leigh. 3rd Wednesday of every month starts at 7.30pm Contact: Laura Palmer, Gill Mountain or Lesley Raynor, Women's Clinic Southend Hospital Email: [email protected] [email protected] [email protected] Telephone: 01702 385025 South Essex Lymphoedema Support Group Meet at Little Havens 8 weekly (just formed) Contact: South Essex Lymphoedema Service 3rd Floor, Phoenix House, Christopher Martin Road, Basildon, Essex, SS14 3EZ Telephone: 01268 448523 The Essex Cancer Network – Patient & Carer information guide 2011 47 Colorectal Gynaecology Southend Beating Bowel Cancer Support Group Meet at Nazareth House, London Road, Southend-on-Sea, bi-monthly 2.00pm - 4.00pm Contact: Joanne Leland or Jacquie Joels Email: [email protected] or [email protected] Telephone: 01702 221407 Basildon : Telephone: 01268 593997 COPES - Southend Meet at Nightingale Centre Southend Hospital 1st Saturday of the month 10.00am - 12noon Contact Emma Azeem, Nightingale Centre, Southend Hospital Email: [email protected] Telephone: 01702 435555 Ext 6464 Optomistic Ostomates (An Ostomy support group Stoma) Meet at Southend Hospital twice a year - June and December Contact: Janet Blainey or Angela Taylor Southend Hospital Email: [email protected]. or [email protected] Telephone: 01702 221043 48 COPES - Basildon Meet in Gynaecology Department at Basildon Hospital on Saturday morning 10.00am - 12.00noon Contact Marilyn Lewis Email: [email protected] Telephone: 01268 593156 The Essex Cancer Network – Patient & Carer information guide 2011 Haematology Southend Lung Cancer and Mesothelioma Support Group South Essex Lymphoma Self Support Group Meet at the Education Centre, Southend Hospital Every 2 months on Wednesdays (depending on room availability) 7.00 pm - 9.00pm Contact: Doreen Chambers Email: [email protected] Telephone: 01268 697738 Meetings begin 12.30 and last two hours. This group will be informal, social and informative Clinical Nurse Specialist will be available each meeting for support and follow up if necessary to provide rapid access to the system according to the need of the patient. Lung Breathe Easy Essex Support for people with lung disease. Meet at Noak Bridge Village Hall. (Please e-mail or telephone for address details) Third Thursday of each month at 1.30pm-3.30pm Email: [email protected] Telephone: 01268 415036 Benefit Advisor will be available each meeting to provide advice and help with financial matters to the patients and carers. Free lunch will be provided. Venue: Coleman Street Chapel, 9 Colman Street, Southend on Sea, SS2 4AW Contact Email: [email protected] [email protected] [email protected] Website: www.southendlungcancerandmes otheliomasupportgroup.org Telephone 01702 435555 x 6835 The Essex Cancer Network – Patient & Carer information guide 2011 49 Canvey,Basildon and Thurrock Lung Cancer and Mesothelioma Support Group Website:www.southendlungcancerandmes otheliomasupportgroup.org Meetings begin 12.30 and last two hours. Telephone 01702 435555 x 6835 (Southend Patient and Carers ) This group will be informal, social and informative 08451553111 x3168 (Basildon Patients and Carers) Clinical Nurse Specialist will be available each meeting for support and follow up if necessary to provide rapid access to the system according to the need of the patient. Benefit Advisor will be available each meeting to provide advice and help with financial matters to patients and carers. Free lunch will be provided. Venue: The Paddocks Community Centre, Long Road, Canvey Island, SS8 0JA. Contact Email [email protected] [email protected] [email protected] [email protected] [email protected] 50 The Essex Cancer Network – Patient & Carer information guide 2011 Urology CADGERS (Patients diagnosed with cancer of the bladder, prostate, kidney, penis) Meet at Tyrell's Centre, Seamore Avenue, Benfleet, Essex The last Thursday of every month between 6.00pm and 8.00pm, Contact: Cathy Miles, Urology OPD, Southend Hospital, Email: [email protected]. Telephone: 01702 385369 (APPLE) Association of Prostate Patients in London & Essex Telephone: 07505 816973 Email: [email protected] Website: www.appleprostate.co.uk Brain & Central Nervous System Brain &CNS Support Group Meet every two months in Southend Hospital Boardroom Contact Lorna Hawkes at Southend Hospital Email: [email protected] Kim Paskins: Email [email protected] Gemma Lowdell: Email [email protected] Telephone: 01702 385113 The Essex Cancer Network – Patient & Carer information guide 2011 51 Other General Support South Essex Cancer Support Group Meet at 12, Cardigan Avenue 10.30am -12noon on 1st and 3rd Tuesday of each month and 2nd and 4th Wednesday Contact: Sylvia Young, Southend Hospital, Email: [email protected] Telephone: 01702 435555 (BLEEP 3353) Westcliff Cancer Support Meet at 49a, Sandown Ave, Westcliff-on-Sea SS0 9YA Every Wednesday 7.30pm -10.00pm Contact: Paula Shorey 49a, Sandown Ave, Westcliff-on -Sea, SS0 9YA Email: [email protected] Telephone: 01702 353620 Counselling Services: South Essex Partnership University NHS Foundation Trust Telephone: 0300 1230 808 St Luke's House Provides Complementary Therapy, Social Work, Macmillan Welfare Benefits Advice, South Essex Lymphoedema Service, bereavement counselling and Information resources. 22, Lampits Hill, Corringham, Essex SS17 9AL Email: informationservice@ stlukeshouse.org.uk Tel: 01375 648170 Helen Rollason Billericay Group Meet 1st Tuesday of every month at Billericay. (Please e-mail or telephone for address details) Contacts: Nazira or Lesley Email: shokyandnaz.visram@ btinternet.com Telephone: 01277 626323 or 01277 658522 Thorpe Bay Surgery Cancer Support Group 99 Tyrone Road Thorpe Bay Essex SS1 3SD Telephone: 01702 582670 52 The Essex Cancer Network – Patient & Carer information guide 2011 Helen Rollason Cancer Care Centre (provides complementary therapies/counselling/information and advice) Rochelle House, Lawn Lane, Springfield, Chelmsford, Essex CM1 7TJ Contact: Lorna Ellis Telephone: 01245 463633 www.helenrollason.org.uk Basildon Carers Support Ashleigh Centre, Whitmore Way, Basildon, Essex SS14 2NN Telephone: 01268 280441 S.E.Essex Neurological Alliance Aim to improve conditions for all patients suffering from chronic neurological conditions and provide health information, education and advice. Email: [email protected] Telephone: 01702 584268 St.John Ambulance (South Essex) 1 Fox Crescent, Chelmsford, Essex CM1 2BN Telephone: 01245 265678 www.sja.org.uk Crossroads Provide a reliable service, tailored to meet the individual needs of each carer and the person they are caring for Castle Point Crossroads Telephone:01268 681720 Thurrock Crossroads Telephone: 01375 394778 or 01375 398475 Rochford Crossroads Telephone: 01268 770771 Southend Crossroads Telephone: 01702 468067 Brentwood Crossroads Telephone:01277 201789. The Essex Cancer Network – Patient & Carer information guide 2011 53 National Voluntary / Statutory Groups The organisations listed here represent a range of national voluntary and statutory groups that offer support and information for people affected by cancer. Brain British Brain Tumour Association Telephone: 0519 293229 Brain Tumour Foundation Telephone: 02083 362020 UK Brain Tumour Society Telephone: 0845 450 0386 www.ukbts.org.uk Breast Breast Cancer Care London & Southern Region Breast Cancer care offers support and information to those affected by breast cancer. Free, confidential services delivered by health care professionals and trained volunteers. Helpline, group and one-to-one support. 54 Office: Monday - Friday 9. 00am - 5. 00pm Helpline: Saturday 10.00am - 2.00pm Breast Cancer Care Regional Office, 61-63 St. John Street, Farringdon, London EC1M 4AN Email: [email protected] Telephone: 0845 077 1895 Fax: 020 7566 5881 Text: 0808 800 6001 Helpline: 0808 800 6000 Website: www.breastcancercare.org.uk Hereditary Breast Cancer Helpline, Breakthrough Breast Cancer, 6th Floor Kingsway House 103 Kingsway, London WC2B 6QX Telephone: 01629 813000 Children Sargent Cancer Care for Children Telephone: 020 8752 2800 www.sargent.org Teenage Cancer Trust Telephone: 020 7387 1000 www.teencancer.org The Essex Cancer Network – Patient & Carer information guide 2011 Cancer and Leukemia in Children (CLIC) Telephone: 0117 311 2600 www.clic.uk.com Make-a-Wish Foundation Aims to grant a favourite wish to children between the ages of 3-18 years who suffer from a life-threatening illness. Contact address: P.O.Box 2590, Romford, Essex RM2 6WH Telephone/Fax: 01708 731431 Helpline: 01276 241127 www.make-a-wish.org.uk Colorectal Beating Bowel Cancer Telephone: 020 8892 5256 www.beatingbowelcancer.org British Colostomy Association Telephone: 0800 328 4257 www.bcass.org.uk Colon Cancer Concern Telephone: 08708 506050 www.coloncancer.org.uk Gynaecological Gynae Cancer Telephone: 01793 322005 www.communigate.co.uk/wilts/gy naec Jo's Trust (Cervical Cancer) Telephone: 01327 361787 www.jotrust.co.uk Ovacome Telephone: 020 7380 9589 www.ovacome.org.uk Lymphoedema Lymphoedema Support Network (LSN) Telephone: 020 7351 5555 www.lymphoedema.org. Lymphoma Association Telephone: 0808 808 5555 www.lymphoma.org.uk Larynx Cancer Laryngectomee Trust Telephone: 01422 205522 IA (The Ileostomy and Internal Pouch Support Group) Telephone: 0800 018 4724 www.the-ia.org.uk The Essex Cancer Network – Patient & Carer information guide 2011 55 Leukaemia Prostate Leukaemia Care Society Telephone: 0800 169 6680 www.leukaemiacare.org.uk Gayscan (for gay people with cancer) Telephone: 020 8368 9027 Leukaemia Research Fund Telephone: 020 7405 0101 www.lrf.org.uk PSA Prostate Cancer Charity Telephone: 0845 300 8383 www.prostate-cancer.org.uk Lung PSA Prostate Cancer Support Association Telephone: 0845 601 0766 www.prostatecancersupport.co.uk Mesothelioma Information Service Telephone: 0800 169 2409 www.mesothelioma.uk.com Roy Castle Lung Cancer Foundation Telephone: 0800 358 7200 www.roycastle.org Myeloma International Myeloma Foundation (UK) Telephone: 0800 980 3332 www.myeloma.org.uk Testicular Orchid Cancer appeal Testicular Cancer Support Telephone: 020 7601 7808 www.orchid-cancer.org.uk Urology Urostomy Association Great Britain Telephone: 0870 770 7931 www.uagbi.org Oesophagus Oesophageal Patients Association Telephone: 0121 704 9860 www.opa.org.uk 56 The Essex Cancer Network – Patient & Carer information guide 2011 General The Bob Champion Cancer Trust Telephone: 020 7924 3553 www.bobchampion.org.uk Bristol Cancer Help Centre Telephone: 0845 123 2310 www.bristolcancerhelp.org The Continence Foundation Telephone: 0845 345 0165 www.continencefoundation.org.uk Impotence Association Telephone: 0870 774 3571 www.impotence.org.uk Macmillan Cancer Support Telephone: 0808 808 0000 www.macmillan.org.uk Marie Curie Cancer Care Telephone: 020 7599 7777 www.mariecurie.org.uk The Essex Cancer Network – Patient & Carer information guide 2011 57 Complementary Therapies A number of complementary therapies are often offered to cancer patients in established cancer care centres. In recommending these therapies, the Essex Cancer Network Partnership Group is aware there is no scientific evidence to indicate that such therapies are effective as a cure for cancer, but do feel that they can play a supportive role in cancer care. As with support groups there is no national regulation governing the provision of complementary therapies and, as such, each individual therapist is largely unregulated and may or may not have extensive experience of dealing with cancer patients, and the emotional issues that they may present. When seeking a suitable therapist, you are recommended to look for someone who is a member of a national organisation governing that particular therapy; that they are certificated as having undergone suitable training; they are fully insured against third party risk, and they agree to comply with the appropriate Code of Conduct for their parent organisation. It should also be noted that it is illegal for anyone outside the medical profession to offer a cure for cancer. Should a therapist suggest that a particular treatment could cure your cancer, rather than just offering compassionate care, then you would be advised to discontinue your relationship with that therapist. The following list includes a number of activities that respected cancer treatment centres and those closely connected with helping cancer sufferers, feel are beneficial in dealing with the emotional and physical implications of the disease. Although these services are sometimes available through charitable organisations, especially hospices, they are generally not available through the NHS. It is necessary, therefore, for the individual to investigate the local availability and costs of such services. 58 The Essex Cancer Network – Patient & Carer information guide 2011 • Meditation • Relaxation • Visualisation • Aromatherapy • Reflexology • Reiki • Spiritual / Faith Healing • Art Therapy • Creative Activities • Exercise routines • Tai Chi • Yoga • Nutrition • Counselling • Acupuncture • Massage • Group Therapies • Spiritual/Religious Groups • Expert Patient Programmes This list is not all the therapies or activities that the individual patient may find useful. It serves as an introduction to the types of activities that other patients have used and recommend. It should be noted that many are the activities commonly seen as contributing to a healthy person's wellbeing, in that they help to deal with emotional and physical stress and encourage calmness and relaxation, all of which are associated with improved immune system function. The Essex Cancer Network – Patient & Carer information guide 2011 59 National Contacts for Complementary Therapy The Users Group is not responsible for the content of these websites British Acupuncture Council 63 Jeddo Road, London, W12 9HQ. E-mail: [email protected] Telephone: 020 8735 0400 Fax: 020 8735 0404 www.acupuncture.org.uk Association of Reflexologists 5 Fore Street, Taunton, Somerset, England TA1 1HX E-mail: [email protected] Telephone: 0870 5673320 (Overseas: 01823 351010) Fax: 01823 336646 The Reiki Association Cornbrook Bridge House, Clee Hill, Ludlow, Shropshire, SY8 3QQ. E-mail: [email protected] Telephone: 01484 480049 www.reikiassociation.org.uk 60 The UK Reiki Federation UK Reiki Federation, PO Box 71, Andover, SP11 9WQ Telephone: 0870 850 2209 www.reikifed.co.uk The British Association of Art Therapists BAAT, 24-27 White Lion Street, London N1 9PD Telephone: 020 7686 4216 Fax: 020 7837 7945 www.baat.org British Wheel of Yoga Provides lists of regional groups throughout the UK. Telephone: 01529 306 851 www.bwy.org.uk The UK Tai Chi Association PO Box 159, Bromley, Kent BR1 3XX E-mail: [email protected] Telephone: 0208 289 5166 Fax: 0208 289 5166 www.tai-chi-assoc.com The Essex Cancer Network – Patient & Carer information guide 2011 Aromatherapy Consortium A focal point for all matters relating to aromatherapy. The consortium will determine the structure of the eventual regulatory body for the aromatherapy profession in the UK. Telephone: 0870 774 3477 www.aromatherapyregulation.org.uk The International Federation of Professional Aromatherapists A professional body and registered charity that represents about 3,000 members, many of whom are working in a conventional health care setting. Telephone: 01455 637987 www.ifparoma.org Association of Reflexologists Offers information about reflexology, access to its register of practitioners and training courses. Telephone: 0870 567 3320 www.aor.org.uk British Reflexology Association Acts as a representative body for people practising reflexology as a profession and for students training in the method. Telephone: 01886 821207 www.britreflex.co.uk British Association of Nutritional Therapists Helps its members attain the highest standards of knowledge, competence and professional practice to protect clients' interests. Telephone: 0870 606 1284 www.bant.org.uk Institute for Optimum Nutrition Offers fact sheets based on common ailments. Each fact sheet includes a description, causes, lists of symptoms, dietary recommendations and nutritional therapy for each particular ailment. Telephone: 020 8877 9993 www.ion.ac.uk The Essex Cancer Network – Patient & Carer information guide 2011 61 62 The Essex Cancer Network – Patient & Carer information guide 2011 South Essex Cancer Service Guide Chapter 4 Request for Feedback and Glossary of Terms The Essex Cancer Network – Patient & Carer information guide 2011 63 What is the Essex Cancer Network? In 2007, as part of a plan to improve cancer services across the whole of the Eastern region, the South Essex Cancer Network and parts of the Mid-Anglia Cancer Network merged to form a new Essex Cancer Network to manage the provision of cancer services across Essex. What is the Essex User Partnership Group? With the establishment of the Essex Cancer Network, the Network Partnership group was formed. The group is made up of patient / carer representatives from the four localities across the Network: NE Essex, Mid Essex, SE Essex and SW Essex. The group also includes members of the Cancer Network Team. The Locality Groups in the South of the County are: Basildon & Thurrock Cancer Services User Group Southend, Rochford & Castle Point Cancer Services User Group What do we do? • Encourage real improvement and a more patient centred approach to how local cancer services are provided. • Enable a broad range of local users' views to be heard to ensure that services reflect the wishes of people affected by cancer. • Enable health care professionals and users to meet on an equal footing. • Motivate and support health care staff to provide high quality services in a more effective way. If you are interested in joining your local User Involvement Group and working to improve cancer services in South Essex, then contact the User Involvement Facilitator at the address below. 64 The Essex Cancer Network – Patient & Carer information guide 2011 This Service Directory is an example of the work done within the partnership group and has been developed by members, both professional and patient representatives, to help those people of South Essex who may receive a cancer diagnosis in the future. Where Can I Go To Find More Information? Essex Cancer Network Office Kestrel House Hedgerows Business Park Colchester Road Chelmsford Essex CM2 5PF Tel: 01245 397618 Email: [email protected] What we are not? The Partnership/User groups enable users and carers to use their personal experiences and interests to improve services for all cancer patients. It is important to understand that we are not a support group, or a fast-track complaints system. Your Suggestions / Comments / Recommendations If you have any suggestions/comments/recommendations with regard to the design and content of this directory, please send them to: The User Involvement Facilitator, Essex Cancer Network, Kestrel House, Hedgerows Business Park, Colchester Road, Chelmsford, Essex CM2 5PF The Essex Cancer Network – Patient & Carer information guide 2011 65 What to do if you are unhappy with your treatment or care Should you be concerned with NHS treatment or care you have the right to report your concerns and have somebody deal with them. If you have a concern it is better to discuss it with the appropriate person as soon as possible. Let the people who are providing the treatment know immediately. Complaints, comments and concerns are welcome, as they help organisations to know where they need to improve services or care, and what actions to take. Talking with the right person can get things improved. Some people prefer to write to the person in charge of the service about which they have a complaint or any concerns, e.g. their GP, ward manager, community manager, hospital complaints manager or chief executive. Alternatively, they can talk to the Patient Advice and Liaison Service (PALS) representative for the organisation concerned. PALS is a service for patients, relatives and carers. Their aim is to provide a confidential listening and support service and information about the treatments and services provided. Southend Hospital PALS Manager 01702 385333 NHS South East Essex PALS Manager 01702 224642 Basildon Hospital PALS Manager 01269 394440 NHS South West Essex PALS Manager 01268 705180 East of England Ambulance, Chelmsford PALS Manager 0800 0283021 66 The Essex Cancer Network – Patient & Carer information guide 2011 If you have raised a concern with the responsible organisation, and have not been satisfied with the response you have received, then there is a formal complaints procedure available to all users of the NHS. If you wish to make a formal complaint then details of the procedure can be obtained from the PALS representative for the organisation concerned, or from the Independent Complaints and Advocacy Service (ICAS). Your complaint will then be dealt with and a full written reply will be sent to you within four weeks of receipt of your letter. If this cannot be achieved you will be kept fully informed of progress. Advocacy (someone to speak and act on your behalf). If you wish to make a formal complaint about the care you have received from the NHS, you may prefer that someone else is able to speak or act on your behalf. This can be a member of your family, a friend or someone from one of the organisations detailed in this booklet. If you are not satisfied with the outcome contact the Independent Complaint and Advocacy Service (ICAS) on Telephone: 08454 561083, who are able to provide the assistance of an advocate to help you with your complaint. The Essex Cancer Network – Patient & Carer information guide 2011 67 Directory of terms used by health professionals Acupuncture - a system of complementary medicine in which fine needles are used for therapeutic purposes. Adjuvant therapy - treatment that is given in addition to the primary treatment. (In cancer treatment this will normally be a course of chemotherapy or radiotherapy as a back-up to surgery) Alopecia - hair loss. Anaesthetic (local) - a drug, cream, or injection that makes part of the body temporarily numb. Appliance Officer - a person who supplies and fits limb supports, breast prosthesis, wigs, surgical stockings, and support collars (see Othotics). Barium Enema - special x-ray of the colon and rectum. The colon and rectum are also called the large bowel. Benign - a tumour or growth which in non-cancerous. Biopsy - the removal of a sample of tissue for examination. Bone Marrow - the spongy inner part of large bones where blood cells are made. Bone marrow aspiration is the removal by fine needle of a small amount of bone marrow for examination. Brachytherapy - implantation of minute radioactive seeds directly into affected organ, providing higher dosage than possible with external beam radiotherapy. Bronchoscopy - an investigation to examine the inside of the lung. Cancer - a growth containing abnormal cells which are invasive and can spread to other parts of the body. 68 The Essex Cancer Network – Patient & Carer information guide 2011 Cancer of Unknown Primary (CUP) - is a general term that means a cancer has been found but it is not clear where it started. Cancer has spread from somewhere else in the body and the area where it first started (the primary site) can't be found Cannula - a small tube inserted into a vein to allow fluids to be given or withdrawn. Carcinogens - substances or agents that tend to produce cancers. Carcinoma - another term used for cancer. Care Pathway - the process that is followed to care for the patient's individual needs. Catheter - a hollow tube of variable length and width used to introduce or withdraw fluid. Clinical Trials - a clinical trial is a research project during which the use of a new drug or treatment is closely monitored. Colon - the large intestine or lower part of the bowel Colonoscopy - an examination of the lining of the bowel (the colon or large intestine) with a long, flexible instrument called a colonoscope. CT (Computerised Tomography) Scan - The test may also be called a CAT scan. CT scans are much more detailed than ordinary x-rays. The scanner sends several radiation beams through the body at the same time and from different angles. An ordinary x-ray sends just one beam. The scan makes detailed pictures of the body's internal organs on a computer screen. The pictures are cross-sections (slices) of the body. Cytology - the microscopic study of individual body cells. Important in the diagnosis of cancer. The Essex Cancer Network – Patient & Carer information guide 2011 69 Electrocardiogram (ECG) - This is a tracing of your heart to check for any abnormalities. Small adhesive pads are attached to your chest and a tracing of your heart is taken. Endoscopy - looking inside the body through a small fibre optic tube passed into the digestive system. ERCP- stands for Endoscopic Retrograde Cholangio-Pancreatography it is a procedure that lets your doctor look at your bile duct and nearby structures through a thin, flexible telescopic instrument called an endoscope. It is passed into the mouth and down as far as the stomach and duodenum (the start of the small intestine). It allows the doctor to look for anything unusual and take samples to be examined under a microscope. The ERCP will help your doctor to find out what sort of illness you have. Exercise Tolerance Test (ETT) - this is an examination to find out how your heart will respond under stress. This is important to know if you are having major surgery. Fine Needle Aspiration (FNA) - it is a way of getting some cells from inside the body, so that they can be looked at under a microscope. Flexible Sigmoidoscopy - an examination of the rectum and sigmoid colon. The doctor or nurse uses a flexible instrument called a sigmoidoscope. It is passed into the rectum (back passage) and up the left side of the large bowel. Haematological - relating to Haematology, which is the branch of medical science dealing with blood, and blood-forming tissues. Haematologist - a doctor who specialises in the treatment of blood disorders. 70 The Essex Cancer Network – Patient & Carer information guide 2011 Hepatic Arteriography and Hepatic Angiography - these are both a type of X-ray in which a dye (contrast medium) is used to show up the blood supply, or the lymph system in the liver. A special chemical that is taken up by any tumour, called Lipiodol, is also used. A series of quick X-ray pictures are taken that make up a real-time film of the movement of blood or lymph within the liver. This helps your doctor to see how your liver is working and to pinpoint any blockages. Hickman Line - a catheter that is specially designed for insertion into a vein or tunnel under the skin. It can be used for giving drugs, blood and nutrition or for taking samples. Histology - the microscopic study of body tissue to diagnose illness. Holistic Assessment - a unified approach to the assessment and recording of patients' needs. Homeopathy - a system of medicine based on giving patients highly diluted amounts of a substance that, in large amounts, would produce similar symptoms to the illness being treated. Hormone Therapy - medical treatment for cancers derived from hormonally responsive tissues. In situ - literally means “in its original place”. Can be used to describe cancer when it is limited to its area of origin. Intramuscular - given into a muscle by injection or infusion. Intravenous - given into a vein by injection or infusion. Laparoscopy - an examination of the inside of the abdomen (the pelvis or belly) using a fibre-optic light and a telescope attached to a microchip camera, which are passed through a thin rigid tube (a laparoscope). Leukaemia - a cancer that suppresses the production of normal blood cells. The Essex Cancer Network – Patient & Carer information guide 2011 71 Lumpectomy - the surgical removal of a lump. Lymphatic System - the network of vessels through which waste matter drains from the tissues into the blood. Lymph Nodes - lymph nodes are located throughout the body, filtering out dangerous substances and producing infection-fighting cells called lymphocytes. Lymphoedema - swelling, usually in the arms or legs, this occurs because the lymph vessels are damaged or blocked. This can occur following some treatments for cancer or due to cancer itself. Lymphoma - cancer of any part of the lymphatic system. Malignant - cancerous. Malignant tumours can invade and destroy surrounding tissue and have the capacity to spread. Mammogram - a specialised x-ray, which shows the breast tissue and can detect breast cancer at a very early stage. Mastectomy - the removal by surgery of all or part of the breast. Metastasis - the spread of cancer from one part of the body to another, by way of the lymphatic system or blood stream. MRI (Magnetic Resonance Imaging) Scan - uses radio waves rather than x-rays to produce pictures which can then be analysed on the computer. MRSA (Methicillin Resistant Staphylococcus Aureus) - is a bacterial infection that is resistant to the majority of antibiotics. Neoadjuvant Therapy - treatment prior to main treatment e.g. radiotherapy, chemotherapy or hormone therapy prior to surgery. Neoplasm - a lump or mass of cells which can be either benign or malignant. Also known as a tumour. 72 The Essex Cancer Network – Patient & Carer information guide 2011 Occupational Therapist - also known as an OT who finds ways to help people to live at home and be independent. Oncologist - a doctor who specialises in treating cancer. A Clinical Oncologist specialising in treating cancer with radiation and a medical oncologist specialising in treating cancer with drugs. Orally - given by mouth. Orthotics - the provision of wigs, false limbs or prosthesis, or other surgical appliances. Pulmonary Function Test (PFT) - This is a test to check how well your lungs are working. It involves breathing into a machine, which measures the strength and volume of your breath. Palliative Care - helps patients and their carers to cope with cancer and its treatment, and to live as well as possible with the effects of the disease. Pathology - the branch of medicine concerned with the examination of diseased tissue. Patient's Journey - a term used to describe the patient's experience through all stages of a disease. Peripheral Stem Cell Transplant (PSCT) - stem cells collected from the patient's blood are removed, stored, and then reintroduced into the bloodstream. (Stem cells are young immature cells that grow into fully developed healthy white blood cells). PET Scanner (Positron Emission Tomography) - Specialist scanner utilising radio active material which is used differently by cancer cells compared with normal tissue. The Essex Cancer Network – Patient & Carer information guide 2011 73 PICC line - A PICC is a long, flexible tube that is put into a vein in your arm and threaded up into a large vein just above your heart. It is used for giving fluids or drug treatment into your bloodstream. PICC stands for "Peripherally Inserted Central Catheter". Placebo - substance or procedure provided as a medicine or therapy which has no therapeutic activity for the condition. Any effect is due to the power of suggestion alone. Portacath - is a small medical appliance that is installed beneath the skin. A catheter connects the port to the vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be taken many times. The port is implanted usually under general anaesthetic in theatre. Primary Cancer - the site of the first growth of abnormal cells that form cancer. Primary Health Care Team - a group of health care professionals working in the community offering treatment and care to patients in their own homes. Prognosis - an assessment of the expected future course and outcome of a person's disease. Protocols - an agreed method of delivering a specific form of treatment or care. Reflexology - a relaxing massage technique which uses pressure to specific points on the feet. Sarcoma - a malignant tumour that arises from bone or muscle, or the connective tissue that joins them. Secondary Tumours - also known as metastases. They are growths of abnormal cells at sites some distance from the primary cancer tumour. 74 The Essex Cancer Network – Patient & Carer information guide 2011 Steroids - an anti-inflammatory drug. Stoma - an artificial opening between an organ and the skin surface formed by surgery. There are different types, including tracheotomy (formed from the windpipe), ileostomy (formed from the small bowel), colostomy (formed from the large bowel) and urostomy (formed from the bladder). Syringe Driver - a small portable machine which administers pain killing and/or other drugs under the skin. It relieves the patient of the need for frequent injections. Therapy - a word often used to mean treatment. Tumour - a lump or mass of cells, which can be either benign or malignant. Also known as neoplasm. Ultrasound Scan - use of sound waves to build up an image of the internal organs. Yoga - a combination of relaxation, breathing techniques and exercise, which combats stress and helps circulation and movement of the joints. The Essex Cancer Network – Patient & Carer information guide 2011 75 76 The Essex Cancer Network – Patient & Carer information guide 2011 South Essex Cancer Service Guide Appendix 1 The Essex Cancer Network – Patient & Carer information guide 2011 77 The Health Professionals who can be involved in your care: Cancer Surgeons - Cancer surgeons carry out operations to remove malignant tumours (cancer growths). There are different surgeons for different parts of the body e.g. the lungs or the bowel. Although they have a special interest in, and experience of cancer surgery, cancer surgeons may also carry out non-cancer surgery. Clinical Nurse Specialist (CNS) - is trained in particular aspects of your care. If nurse specialists are involved in your treatment they will discuss this and other aspects of your care and your needs, with you in detail. They can offer specialist advice, emotional support and information to cancer patients and their carers and other staff involved in giving cancer care. They can work in a hospital or in the community. Clinical Oncologists - Clinical oncologists are doctors who are skilled in non-surgical forms of cancer treatment. Clinical oncologists specialise in treating cancer with radiotherapy treatments (high energy x-rays), chemotherapy (anti-cancer drugs) and hormone treatments. They often specialise in particular types of cancer Chaplains - Chaplains work in a variety of places including hospitals, hospices and in the community. Most are from Christian churches, but it is becoming more common to have hospice and hospital chaplains from other faiths. Hospital and Hospice Chaplains are available to all patients, relatives, friends and staff for pastoral, religious and spiritual support. Sometimes it is difficult to talk to family, friends or health professionals about the many different issues connected with cancer. Chaplains are very used to talking to people from any faith or community. They can provide a confidential place for people to talk over anything that concerns them. It does not matter if these discussions have nothing to do with faith or religion. 78 The Essex Cancer Network – Patient & Carer information guide 2011 Consultant - an experienced specialist in his or her field. There may be more than one consultant in the team that cares for you. Counsellors - many people find that having cancer can affect different areas of their lives. Sometimes it is helpful to talk through some of the issues that may be worrying you. It can be helpful to talk these issues through with a counsellor. Dieticians - Dieticians work in hospitals and in the community. They can offer support and practical advice on a number of problems caused by cancer and its treatment. These problems may include nausea, vomiting, a sore mouth or throat, taste changes, swallowing difficulties and a reduced appetite. Dieticians can also tell you about special diets and supplementary drinks that give extra nourishment. District Nurse - visits you in your own home to give you treatment and nursing care. Haematologists - Haematologists are doctors specialising in diagnosing and treating blood disorders. These include cancers such as leukaemia (affecting the bone marrow), lymphomas (affecting the lymphatic tissues) and myelomas (affecting the plasma cells in the bone marrow). Health Care Assistant/Auxiliary Nurse - looks after you on a day to day basis on the ward. In outpatients, they are involved in the running of the clinic. Key Worker - A person who with the patient's consent and agreement, takes a key role in coordinating the patients' care and promoting continuity and ensuring that the patient knows who to access for information and advice. Lead Clinician - normally a physician or surgeon who takes responsibility for a particular cancer service. The Essex Cancer Network – Patient & Carer information guide 2011 79 Macmillan/ Palliative Care CNS - offer emotional support and practical advice to people with cancer and those close to them. They can be involved from the point of diagnosis, and throughout your treatment and will also be able to suggest other forms of support, such as counselling, if appropriate. Medical Oncologists - Medical oncologists are specialist doctors who treat cancer with drugs. These can include chemotherapy, hormone treatments and biological therapies. Medical oncologists, like clinical oncologists, often specialise in the management of particular types of cancer. Medical Students - Medical students learn by being involved in the treatment and care of patients. Every fully trained doctor was once a medical student and learned from patients in the past. However, if you do not wish to be examined in front of or by a medical student, or if you wish to talk privately with your doctor, say so. You have a right to privacy. No one will be offended and it will not affect your care. Nurse - a named nurse plans and provides your nursing care whilst you are an in-patient on the ward. When your named nurse is away, another member of the nursing team will take over and care for you. In outpatients each clinic has a named nurse who is available to you. Occupational Therapists - Occupational Therapists (OTs) work for social services, the NHS and voluntary organisations. Hospital OTs provide specialist advice and can organise equipment for your home to help you live independently. This will help you carry out daily activities such as washing, dressing or cooking. Palliative Medicine Consultants - Palliative medicine doctors specialise in pain control and the management of other physical symptoms caused by the cancer or by the side effects of treatments. They also care for the emotional, social and spiritual needs of individuals and their families. 80 The Essex Cancer Network – Patient & Carer information guide 2011 Physiotherapists - Physiotherapists work in hospitals and the community. They can help you to maintain your muscle strength and fitness, so you can stay mobile and independent. They can also provide walking aids. Some of them are trained to help with Lymphoedema (swelling in the limbs). Radiographers - There are two different types of radiographer: diagnostic and therapy radiographers. Diagnostic radiographers carry out certain tests asked for by your cancer doctor. You may meet them if you have an x-ray, CT scan or MRI scan. Therapy radiographers organise and give radiotherapy treatment. They work closely with the consultant to plan the right treatment for you. Senior House Officer (now known as FY2 doctors) and House Officer (now known as FY1 doctors) - trained doctors undergoing further training and gaining experience. They spend a few months working with each consultant. They may be referred to as junior doctors. Specialist Registrars - or SpR is a doctor who is receiving advanced training in a specialist field of medicine, in order to eventually to become a Consultant. Ward Sister/Manager - is the most senior nurse in the ward area. The Essex Cancer Network – Patient & Carer information guide 2011 81 82 The Essex Cancer Network – Patient & Carer information guide 2011 South Essex Cancer Service Guide Appendix 2 The Essex Cancer Network – Patient & Carer information guide 2011 83 Professionals involved in Primary Health and Social Care General Practitioner Your GP, or family Doctor, is responsible for your medical care at home and can arrange help from other health/care professionals, or to access other services. Primary Health Care Team This is the team usually based at the GP surgery and comprising the GP, district nurse, health visitors, practice nurse, practice manager, receptionist and other associated professionals. District Nurse District nurses provide 'hands on nursing care' such as dressings and injections and can offer practical advice at home. They offer support and management of symptoms by working closely with your GP. They are available 24 hours a day in South Essex. Access to district nurse support can be arranged via the GP practice or by contacting the numbers below. A district nurse may act as a coordinator for the primary health care team. Basildon Liaison Telephone: 01268 593469 Southend Liaison Telephone: 01702 507170 - 7:00am-6. 30pm Out of hours Telephone: 01702 435555 - 6. 00pm -7:00am 84 The Essex Cancer Network – Patient & Carer information guide 2011 Community Macmillan Nurse Macmillan nurses have specialist knowledge and experience in the care of cancer patients. They are skilled in the management of pain and the control of other symptoms, as well as offering emotional support to patients and their families. They do not provide 'hands on care' but advise the primary health care team by working alongside GPs and district nurses. Southend: Telephone: 01702 332487 Working hours Monday - Friday 9.00am -5.00pm, outside these hours contact GP or district nurse Macmillan Information Advice Line (MIALS): 01702 220359 Basildon: Telephone: 01268 448521 Working hours Monday - Friday 9.00am - 5.00 pm, outside these hours contact GP or district nurse Social Worker Social service professionals assess a client's care needs after discussion with the client and their family, and aim to match their needs to available resources. They may be able to provide practical help for example with washing and dressing, and financial advice/support. Care Assistant / Home Care Team The home care team can provide help with ordinary personal and household tasks, for example washing, dressing and cooking etc. according to the care needs established by social services. The client may have to make a substantial financial contribution towards the cost of care. continued The Essex Cancer Network – Patient & Carer information guide 2011 85 Occupational Therapist / Rehabilitation Team Occupational therapists help with issues due to impaired physical or mental capability which may affect normal daily activities/lifestyle. They will assess the client's needs and where necessary suggest/arrange adaptations to the home/care environment, so as to enable the client to be as independent and as safe as possible. To arrange access to an occupational therapist initially contact your GP or social services. 86 The Essex Cancer Network – Patient & Carer information guide 2011 Hospitals Basildon and Thurrock University Hospitals NHS Foundation Trust Nethermayne Basildon Essex SS16 5NL 0845 155 3111 Southend University Hospital NHS Foundation Trust Prittlewell Chase Westcliff-on-Sea Essex SS0 0RY 01702 435555 Broomfield Hospital Court Road Broomfield Chelmsford Essex CM1 7ET 0844 822 0002 Ipswich Hospital Heath Road Ipswich Suffolk IP4 5PD 01473 712233 Essex County Hospital Lexden Road Colchester Essex CO3 3NB 01206 747474 The Essex Cancer Network – Patient & Carer information guide 2010 87 This booklet will be updated on a regular basis. If you have any suggestions on how it can be improved please write to: The Essex Cancer Network Kestrel House Hedgerows Business Park Colchester Road Chelmsford CM2 5PF South Essex Directory Edition 2