Download South Essex - Essex Cancer Network

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.
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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).
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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
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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
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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.
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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
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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.
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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
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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.
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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.
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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
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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.
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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.
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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
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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
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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.
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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.
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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.
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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
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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.
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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.
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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]
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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
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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.
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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
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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
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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
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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.
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• 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.
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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
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The Essex Cancer Network – Patient & Carer information guide 2011
South Essex Cancer Service Guide
Chapter 4
Request for Feedback
and
Glossary of Terms
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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.
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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
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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South Essex Cancer Service Guide
Appendix 2
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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
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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
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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.
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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
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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