Please also see our pages on medical information, support groups and chatrooms.
Cancer – general organisations
Cancerbackup provides a range of support, including a cancer information service, leaflets on individual cancers, and emotional support and practical advice from cancer nurses by telephone, letter or email.
Cancer Research UK is a free information service about cancer and cancer care for people with cancer and their families.
CAPCIS (Cancer and palliative care information service) is a gateway to information about cancer and other life-limiting conditions, services and support available for patients and carers, including young carers. While some information is relevant only for people in Argyll and Clyde, much of it will be useful for people nationwide.
Macmillan Cancer Support provides information on its website about Macmillan nurses and doctors, cancer care centres, cancer information and financial help.
Maggie's provides information about Maggie’s Centres, which provide psychological support for anybody who has, or has had, cancer. The centres are also for their families, their friends and their carers. Most Maggie’s Centres are currently located in Scotland.
riprap offers information and advice for 12-16 year olds who have a parent with cancer.
Tenovus provides information about support it provides, including a freephone cancer helpline and an ‘ask the nurse’ email service.
2bMe is an organisation for young people with cancer, offering advice on how to deal with people’s reactions, socialising and looking after yourself.
Back to the top
Organisations for specific cancers
Bowel cancer
Bowel Cancer UK provides information about bowel cancer.
Brain cancer
Brain Tumour Action provides support, counselling and information for people with brain tumours and their families.
Breast cancer
Breast Cancer Care provides information, practical assistance and emotional support for anyone affected by breast cancer.
Cervical cancer
Jo's Trust provides support, including information about pre-cancer and cancer of the cervix, confidential medical advice and an online chatroom.
Kidney cancer
Kidney Cancer UK provides UK kidney cancer patients and their carers with information about kidney cancer and its treatment.
Leukaemia
Leukaemia Care provides care and support, including information booklets and a 24-hour phone line, to people whose lives are affected by leukaemia, lymphoma and the allied blood disorders.
Liver cancer
British Liver Trust provides a range of information and support, including medical information leaflets, and has a medical helpline. It provides details of local support groups and hosts a chatroom.
Lung cancer
The British Lung Foundation provides support and information. It supports people affected by lung disease through a nationwide network of Breathe Easy support groups, as well as providing information on paper, on the web and on the telephone.
Lung Cancer Online provides information to patients and families.
Mesothelioma UK provides information for patients diagnosed with mesothelioma and their carers.
The Roy Castle Lung Foundation provides support, including information on lung cancer and a free telephone helpline to access details of local lung cancer nurse specialists. It also runs a network of local support groups.
Lymphoedema
The Lymphoedema Support Network offers information and support to people with this condition and those at risk of developing lymphoedema following surgery/treatment for cancer.
Lymphoma
The Lymphoma Association provides emotional support and information on a range of issues to anyone with lymphatic cancer and their families, carers and friends.
Melanoma
Wessex Cancer Trust MARC's Line (Melanoma and Related Cancers of the Skin) offers support through a resource centre, telephone advice line and self-help network of patients, families, members of the general public and health professionals. It also provides information and leaflets online.
Myeloma
Myeloma UK provides information and support to all those affected by myeloma and aims to improve treatment and care through education, research, campaigning and awareness.
Penis, prostate and testicular cancers
Everyman provides information about prostate and testicular cancer.
Orchid provides information about penis, prostate and testicular cancers.
The Prostate Cancer Charity provides information about prostate cancer, support groups and a chatroom.
Thyroid cancer
British Thyroid Foundation provides information on thyroid cancer and all types of thyroid disorders, and has local support groups.
Back to the top
Other conditions
Acoustic neuroma
The British Acoustic Neuroma Association provides a range of support, including information exchange, mutual support and listening.
AIDS
NAM provides information to people who are HIV positive and to the professionals who treat, support and care for them.
Terrence Higgins Trust provides information and advice about HIV and AIDS, and information about what local services are available, including counselling, group support and practical assistance.
Alzheimer’s
Alzheimer's Society provides a range of support. This includes a helpline for patients and carers, factsheets on a wide range of subjects, and financial help for families in need.
Cerebral palsy
SCOPE provides information and publications about cerebral palsy and issues around disability, and information about local groups and services.
Chronic Obstructive Pulmonary Disease
Breathless with Emphysema and COPD is hosted by a patient and provides information about the condition, how to manage it, treatments and many other subjects, including an update on his own condition.
Creutzfeldt Jakob Disease
CJD Support Network provides information, financial help and emotional support for people with all strains of Creutzfeldt-Jakob disease and their carers.
Heart Disease
The British Heart Foundation provides information and support for heart patients, as well as advice on lifestyle and treatment options.
Grown Up Congenital Heart Patients Association provides support, including publications on lifestyle issues, medical journals and support for congenital heart patients.
Huntingdon’s disease
The Huntingdon's Disease Association offers support, message boards and factsheets to people affected by the disease.
International Huntingdon's Association offers publications, medical articles, books and videos.
Kidney/renal
Kidney Research UK offers advice and support on different treatment options and lifestyle changes.
UK National Kidney Federation provides medical and practical information, and hosts a chatroom.
Liver disease
British Liver Trust offers information leaflets and a helpline, and hosts a chatroom.
Lung
British Lung Foundation provides information and has a nationwide network of support groups.
Motor Neurone Disease
The Motor Neurone Disease Association provides a helpline and information about MND, local support groups and what services are available from the Association and other organisations.
Multiple Sclerosis
Multiple Sclerosis Society provides information, a helpline and discussion forums.
The Multiple Sclerosis Resource Centre (MSRC) offers information, as well as message boards and chatrooms.
Multiple System Atrophy
Sarah Matheson Trust offers information and support, including downloadable factsheets.
Parkinson’s disease
Parkinson's Disease Society provides information about the disease, treatment and symptom control.
Stroke
The Stroke Association provides information on local services, education and research.
Thyroid disorders
British Thyroid Foundation provides information on the condition and local support.
Back to the top
General
All about bowel surgery
provides
help and advice for people about to have or who have had a stoma after bowel or bladder surgery.
Cancerbackup has a section on hair loss which includes information about how to look after your hair during cancer treatment, coping with hair loss, wig suppliers and financial assistance.
Expert Patients Programme runs courses to help people living with a long-term health condition maintain their health and improve their quality of life, and also Looking after me courses for carers.
Homes with heart organises weeks in private holiday homes to young families (adults under 50) who need a break because either a child or parent is terminally ill or has a life-limiting disease, or the family is recently bereaved. There is no charge to the family and this scheme is not limited to low-income families. The application form must be sent with a supporting letter from a healthcare professional. Most properties are currently in the south of England though the charity hopes to offer properties nationwide in due course.
Let's face it is a support network for people with facial disfigurement, their families, friends and professionals.
National Association of Laryngectomee Clubs lists support clubs nationwide and offers a range of services including non-medical help and information to laryngectomees and their families and carers.
The Oesophageal Patients Association provides a range of support. It aims to help new patients and their families to cope with any difficulties arising as a result of treatment. It provides publications and a telephone support line. It arranges patient support meetings around the UK and, where possible, visits patients in hospital or makes contact during their convalescence.
The Urostomy Association for Great Britain and Ireland aims to support those who have or about to undergo surgery for urinary diversion. Support group meetings are organised by local branches (site lists contacts for England, Wales and the Republic of Ireland).
The Youth Cancer Trust provides free holidays to young cancer patients between the ages of 14-30 attending any hospital in the UK or Irish Republic subject to approval from their doctor.
They are invited to spend a few days with other guests of a similar age and situation at Tracy Anne House in Bournemouth. They can come in groups up to eight and bring a brother, sister or a friend.
Complementary therapies
Get Well UK includes a map which shows clinics in the UK offering complementary therapies free or at low cost. All clinics shown on the website have signed up to the Get Well Quality Statement, which they suggest you read.
The Institute for Complementary and Natural Medicine provides information about complementary medicine, including where to find local practitioners.
Penny Brohn Cancer Care (formerly Bristol Cancer Care Centre) offers information on complementary therapies.
Back to the top
For carers
Your District Nurse should be able to provide information about local carers’ organisations.
AdviceGuide - Citizens Advice Bureau is the online version of the Citizens Advice Bureau. It provides independent advice on various issues such as benefits, debt and tax relief for carers and patients.
Befriending Network Scotland aims to help improve the quality of life for people living at home in Scotland who have been diagnosed with a terminal or life threatening illness. Trained volunteers offer practical and emotional support through regular visits. If you live elsewhere you can download their newsletters or ask about befriending projects in your area.
Carers UK provides information and support to people caring for relatives and friends. More than 100 branches run by carers refer people to local sources of help and support. The charity can advise carers on rights and entitlements. Free leaflets and information sheets are available. The site also has a page with links to other useful organisations.
Crossroads provides support for carers, including care in the home by paid, trained carer support workers, to enable carers to have a break:
England and Wales
Scotland
Northern Ireland
Directgov provides ideas about where to get advice and includes information about financial support you may be able to receive.
Help the Hospices offers downloadable leaflets for carers on subjects such as caring at home, financial issues and young carers. (The web page includes documents for healthcare professionals, but each document is labelled as being for either carers or hospice and palliative care services.)
Lymphoma-net.org includes a section on help and advice for carers.
Motor Neurone Disease Association provides information for carers on how to make the most of your health and social care team, the common reactions carers have and practical advice on how to keep well yourself.
Princess Royal Trust for Carers provides Carers’ Centres across the UK offering information, support and social activities. It also provides information for carers on subjects such as support services, useful organisations, how to get their own needs assessed and looking after themselves. It includes information for young carers.
Back to the top
Further reading – caring for someone at home
The Natural Death Centre is well known for independent funeral advice but also aims to support those dying at home and their carers . It publishes The Natural Death Handbook, which includes information on caring for someone at home. Their Advance healthcare directive (living will) and Advance funeral wishes form are available for purchase.
It also recommends the following books:
Coming Home - A guide to dying at home with dignity by Deborah Duda
(published by Aurora Press, 1987)
Cancer as a Turning Point- A Handbook for people with cancer, their families, and health professionals by Lawrence LeShan
(published by Gill & Macmillan, 1996)
Handbook for Mortals- Guidance for people facing serious illness by Joanne Lunn and Joan Harrold
(published by OUP, 2001)
Back to the top
Please note: Marie Curie Cancer Care provides links to third party websites where appropriate and is not responsible for the availability or content of any of these linked sites.
