Secondary cancer resources and support
There are lots of organisations, support groups and helpful books to help you cope with symptoms and side effects caused by cancer and its treatment.
Cancer Research UK information and support
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
Cancer Chat is our online forum where you can share experiences.
General support and information organisations
An independent network that provides free advice about money, legal issues, housing health and social welfare issues. Often provides advice in English and other languages.
Cruse provides bereavement counselling. It offers help, support and information to anyone facing bereavement or who has been bereaved. It has a network of local branches throughout the UK.
Helpline: 0808 808 1677
Family Action helps families with the most complex and difficult issues they are facing. This includes financial difficulties, mental health problems, social isolation, learning disabilities, domestic abuse, or substance misuse and alcohol problems.
Phone: 0808 802 6666 (Monday to Friday, 9am to 9pm)
Text: 07537 404 282
An online comprehensive guide to planning a funeral. It covers what to do after a death, how to organise a funeral, and how to deal with legalities and financial issues. It also lists a number of organisations to help you.
Grief encounter is one of the leading providers of support services for bereaved children and their families throughout the UK. Their website has resources and information for bereaved children and teenagers.
Helpline: 020 8371 8455 (Monday to Friday, 9am to 5pm)
Email: contact@griefencounter.org.uk
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form
Telephone: 0121 711 1343
Email: info@nafd.org.uk
Advises on arranging funerals. Gives information on the services provided by funeral directors and advises on what to do after someone has died. Has a list of funeral directors across the UK
This site is designed to guide you through the practical side of bereavement. It has advice on arranging a funeral and dealing with the legal and financial issues. They offer a service to stop your loved ones unwanted mail after their death.
Telephone: 0800 0246 121 (Monday to Friday 9am - 6pm and Saturday 9am - 4pm)
This organisation aims to support you through your bereavement, connect you with others who have experienced something similar and help you get the information and assistance you need.
Phone: 0300 200 4112
Email: hello@thelossfoundation.org
Organisations for carers
Gives information and support to carers on many issues. Has local groups all over the UK. The head office puts you in touch with your local group.
Helpline: 0808 808 7777 (Open Monday to Friday, 10am - 4pm)
Email: advice@carersuk.org
Provides information and support, including advice on financial support to carers. The website has a search function to find local support in your area.
This is part of the NHS website. It can help you with information about caring for someone else.
Organisations that provide equipment
You can borrow toileting aids or a wheelchair short term from The British Red Cross. This might be for free, or they may ask for a donation in your area.
There are many commercial companies that sell equipment online, via catalogues or in shops. Here are some tips when shopping around:
- Ask an occupational therapist what they think might be best to meet your needs – your Nurse Specialist, district nurse or GP can refer you to an occupational therapist if you don’t have one
- Compare prices between different companies
- Check if you can return the item if it’s not exactly what you are looking for (this is usually if it is unused and in its original packaging)
- Look for a number to call if you are unsure about how to safely fit or use the equipment
The Disabled Living Foundation has an advice and information service on their website. This can help you when you’re looking for a specific piece of daily living equipment. They offer impartial advice and suggestions of equipment from reputable companies. You can also call them for advice.
British Red Cross services vary in different parts of the country. They provide medical equipment, transport and hospital escort services, home emergency personal care and home respite care. There are branches throughout the UK.
Support Line: 0808 196 3651 (Monday to Friday 10am to 5pm, Wednesday 10am to 8pm)
Living Made Easy is part of the Shaw Trust. It provides information and advice on equipment and aids to help with daily living.
Specific symptoms organisations
A charity that is being run entirely by volunteers. They provide support, advice, and help to people affected by chronic pain and those close to them.
Telephone helpline (Painline): 0345 603 1593 (Monday to Friday from 10am to 4pm)
Email: aopisat@btinternet.com
Write to: Action on Pain, 2 Mill Close, Terrington St Clement, Norfolk, PE34 4JG
The Bladder and Bowel Community supports people living with bladder and bowel disorders and has a telephone helpline. The service is confidential. They can also give you information about stoma products.
They have a 'Just Can't Wait' card which allows holders access to toilets in shops and when you are out. It's free to order on the website.
Forward House
17 High Street
Henley-in-Arden
B95 5AA
Home Delivery Service Sign Up: 0800 031 5406
Home Delivery Service Existing Customers: 0800 031 5407
Email: help@bladderandbowel.org
Breast Cancer Now is a charity dedicated to funding breast cancer research. They also provide breast cancer information and support across the UK. Services are free and include a helpline, website, publications, and practical and emotional support. It was formed by the merger of The Breast Cancer Campaign and Breakthrough Breast Cancer in 2015.
5th Floor Ibex House
42 - 47 Minories
London
EC3N 1DY
Tel: 0808 800 6000
Ask a nurse: Contact form
This is a UK support group for people with a colostomy. It provides information and support and booklets to anyone who has or is about to have a colostomy.
Free helpline: 0800 328 4257 (24 hrs a day, 7 days a week)
Email: hello@colostomyuk.org
General enquires: 0118 939 1537 (between 09:00 and 17:00)
A registered charity that aims to improve the lives of those with lymphoedema. They actively contribute to improving the management of lymphoedema worldwide, especially in developing countries. They have a number of booklets that can be downloaded free of charge. Their head office is in Denmark.
Email: info@lympho.org
Tel: 0045 7020 0305 (International phone number from the UK)
A national charity offering information and support to anyone affected by lymphoedema. It has local support groups, a helpline and a website. It also produces a range of information including factsheets about lymphoedema and its treatment, videos about self management techniques for lymphoedema, and a newsletter.
Telephone: 020 7351 4480
Email: admin@lsn.org.uk
MLD UK promotes public awareness of Manual Lymphatic Drainage (MLD). They publish a register of practitioners of MLD.
Telephone: 0844 800 1988
Email: admin@mlduk.org.uk
A support group for anyone who suffers from chronic pain. They deliver self management training to help those with chronic pain.
Freephone: 0800 783 6059 (Monday to Friday, 8.30 am to 4.30 pm)
Email: info@painassociation.com
Pain Concern offers information and support to people with pain and those who care for them. They run a helpline staffed by volunteers and have an online forum called HealthUnlocked for members to share experiences. You can listen to podcasts that feature interviews with experts and people managing their pain. You can also subscribe to their newsletter, Pain Matters.
Helpline: 0300 123 0789
Email: help@painconcern.org.uk
This organisation provides information and support for people who need artificial feeding. They also have regional support groups for PINNT members.
PO Box 3126
Christchurch
Dorset
BH23 2XS
Telephone: 020 3004 6193
Email: comms@pinnt.com
A charitable membership body of health care professionals with an interest in the care and support of people with lymphoedema. Their resources include a directory of lymphoedema specialist practitioners.
Tel: 01452 790 178
Organisations that give information
Age UK provides information, advice and support for people in later life.
7th Floor
One America Square
17 Crosswall
London
EC3N 2LB
Advice line: 0800 678 1602 (8am-7pm, 365 days a year)
Provides information around the rights and choices associated with having 'a good death' as well as free templates for compiling an advance decision. Also conducts research into rights and choices at end of life.
Phone: 0800 999 2434, open Monday to Friday, 10am - 4pm
Email: info@compassionindying.org.uk
Disability Rights UK provides an information and advice service and campaigns for disabled people's rights.
They also provide a Just Can't Wait card and radar keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry. They also have several helplines providing information and advice.
General enquires phone: 0330 995 0400
Email: enquiries@disabilityrightsuk.org
Hospice UK answers enquiries about any aspect of hospice care. The website includes a directory of hospice services in the UK and Ireland.
34 - 44 Britannia Street
London
WC1X 9JG
Telephone: 0207 520 8200
SCOPE is a disability equality charity in England and Wales. They provide practical information and emotional support when it's most needed. They also campaign to create a fairer society.
Phone: 0808 800 3333
Email: helpline@scope.org.uk
Gives support and information to help people die naturally at home. Advises on arranging inexpensive and environmentally friendly funerals. Also provides counselling.
Phone: 01962 712 690
Email: rosie@naturaldeath.org.uk
Books about advanced cancer
R B Patt and S S Lang
Oxford University Press, 2006
ISBN 9780195312027
Written to help people with cancer and their close friends and family make decisions about living with cancer and managing symptoms. Some sections are specific to the US. But it is still helpful for people in the UK
Charles Cowling
Bloomsbury Publishing, 2010
ISBN 1441133224
This practical guide talks about the choices available when arranging a funeral. It covers all aspects of planning a service and creating a ceremony that both commemorates and celebrates a life, and provides comfort, inspiration, and good memories.
Books for carers
Julie Spencer-Cignoz
Age Concern books, 2003
ISBN 0862423678
Has information and practical advice for people caring for someone who lives some distance away. Has information on keeping in touch, financial support, and caring for physical and emotional needs.
About dying with cancer
Dorothy Rowe
Harper Perennial, 2007
ISBN 000736914X
This book discusses fear of loss, bereavement, old age and death, and has guidance on how to work with fear. Written by a psychologist.
Stephen Levine
Knopf Doubleday Publishing Group, 2010
ISBN 030777368X
Sensitively explores all aspects and issues of death. Especially the feelings and emotions people might experience when they or a loved one is dying.
His Holiness the Dalai Lama and J Hopkins
Atria Books, 2004
ISBN 978-0743244695
Discusses how to approach death as a natural part of life. It is written in a warm, humorous and sensitive style.
The Natural Death Centre
Strange Attractor Press, 2012
ISBN 1907222057
These books have comprehensive information about arranging funerals and working with funeral directors to get the best care. They cover preparing for dying and caring for a dying person, drawing up a will, living wills and memory boxes. The 5th edition contains more detailed information and includes essays on dying by various well-known authors.
About coping after someone has died
C Murray-Parkes, P Laungani and W Young
Routledge, 2015
ISBN 1317520920
Discusses beliefs about death and mourning and how people use ritual to cope with death.
Earl A. Grollman
Beacon Press, 1993
ISBN 9780807025017
Discusses how to talk about and cope with grief after the death of a close friend or relative.
C Sawyer and M Spero
Routledge, 2015
ISBN 9780415720519
Covers the law and issues you need to be aware of when dealing with wills and probate. Also discusses what happens if there is no will.
Harriet Sarnoff Schiff
Souvenir Press, 1979
ISBN 9780285648913
A sensitively written book that discusses all the issues that affect parents who have lost a child. Contains many personal accounts.
Susan Wallbank
Darton, Longman and Todd Ltd, 2010
ISBN 0232526397
Covers the death of a partner and the effects this has. Looks from the point of view of various groups of people.
T Romain and E Verdick
Free Spirit Publishing Inc, 2003
ISBN 1575420554
Describes the emotions people have after the death of a close friend or relative and advises how to cope.
Paul Harris
Which? Books, 2009
ISBN 1844900711
Covers the law and describes issues you need to be aware of. Has a list of useful addresses.
Check what to do after a death, how to register the death, notify government departments and manage financial issues.
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