Support for the journey
Once you’ve received a life-changing diagnosis, there’s no going back. It will probably alter your perspective, and demand that you make at least a few lifestyle changes.
Some conditions might disrupt your life for a few months before allowing you to move on. Others might be chronic, and stay with you for the long haul. Regardless of the type of diagnosis, we believe that the more support you receive the better you will cope.
Below is a selection of charities and organizations that may be able to provide additional support as you build resilience and strength.
You may also like to download our free ‘Creating a plan’ and ‘Setting goals for the future’ worksheets to help you make positive changes in your life.
Brain & Spine Foundation
The Brain & Spine Foundation understands that neurological conditions and their associated treatments are often complex and poorly understood. The organization aims to improve the quality of life of people affected by neurological problems by providing expert information, support and education throughout a patient’s journey.
Brain & Spine Helpline
LG01, Lincoln House
1–3 Brixton Road
Call: 0808 808 1000
Motor Neurone Disease Association
The Motor Neurone Disease Association aims to improve care and support for people with motor neurone disease (also known as ALS or Lou Gehrig’s disease). The organization also funds and promotes research that leads to new understanding and treatments, and campaigns to raise awareness of the disease.
David Niven House
10–15 Notre Dame Mews
Call: 01604 250505
IIH UK was created by Rachel Turner, a sufferer of idiopathic intracranial hypertension (IIH) who realized there was no national organization dedicated to the needs of IIH sufferers in the UK. Rachel and her enthusiastic team of volunteers provide information, promote awareness and support sufferers of IIH and their families and friends.
The MS Society is a community of people living with multiple sclerosis, and scientists, campaigners, volunteers and fundraisers who are dedicated to driving research into treatments for the disease. They understand what life is like with MS, and are there to support each other through the journey.
MS National Centre (MSNC)
372 Edgware Road
Call: 0808 800 8000
Epilepsy Action is the UK’s leading epilepsy organization and exists to improve the lives of everyone affected by the condition. As a member-led association, it is led by and represents people with epilepsy and their friends, families and healthcare professionals.
New Anstey House
Gate Way Drive
Call: 0808 800 5050
The Alzheimer’s Society is the UK’s leading dementia support and research charity for people living with dementia, their families and carers. Its National Dementia Helpline provides information, support, guidance and signposting to other appropriate organizations.
43–44 Crutched Friars
Call: 0300 222 1122
Dementia UK offers specialist, one-to-one support and expert advice for people living with dementia. Its renowned Admiral Nurses work hand in hand with families, helping them cope with the fear, uncertainty and difficulties that dementia may bring.
Dementia UK, Second Floor
356 Holloway Road
London N7 6PA
Call: 0207 697 4160
Huntington’s Disease Association
The Huntington’s Disease Association exists to support people affected by Huntington’s disease and to provide information and advice to professionals who support individuals and their families. The organization also promotes and develops a range of local services and organizes seminars, training days and workshops.
Huntington’s Disease Association
Suite 24, Liverpool Science Park IC1
131 Mount Pleasant
Call: 0151 331 5444
Parkinson’s UK drives better care, treatments and quality of life for people with Parkinson’s disease. It provides expert information on every aspect of Parkinson’s so that people affected by the condition can stay in control of their lives. It also raises awareness, changes perceptions and works in partnership to drive better services.
215 Vauxhall Bridge Road
Call: 0808 800 0303
Macmillan Cancer Support
Macmillan Cancer Support understands how a cancer diagnosis can affect everything. Macmillan is there to support people with cancer and help them take back some control over their lives. It also offers practical, medical and financial support, and pushes for better cancer care.
Macmillan Cancer Support
89 Albert Embankment
Call: 0808 808 00 00
Maggie’s provides free practical, emotional and social support to people with cancer and their family and friends, following the ideas about cancer care originally laid out by Maggie Keswick Jencks. The first Maggie’s Centre opened in Edinburgh in 1996 and since then Maggie’s has continued to grow, with 19 Centres at major NHS cancer hospitals in the UK, online and abroad.
10 Dumbarton Road
Call: 0300 123 1801
Shine Cancer Support
Shine Cancer Support is the only UK charity that exists exclusively to support adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. Its mission is to provide tailored information and peer support for anyone in their 20s–40s diagnosed with any cancer. It does this through a range of activities including lunches, beach walks, multi-day getaways, workshops, online networking and mentoring.
Orchid is the UK’s leading charity working on behalf of anyone affected by male cancer – prostate, testicular and penile cancer. Established in 1996 by testicular cancer patient Colin Osborne MBE and the oncologist who saved his life, Professor Tim Oliver, Orchid exists to save men’s lives from male cancer through a range of support services, education and awareness campaigns and a pioneering research programme.
231–233 North Gower Street
Call: 0808 802 0010
Bloodwise is the UK’s specialist blood cancer charity. It has been working to beat blood cancer since 1960, and funds world-class research, provides practical and emotional support to patients and their loved ones and raises awareness of blood cancer.
39–40 Eagle Street
Call: 020 7504 2200
The Brain Tumour Charity
The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity, committed to fighting brain tumours on all fronts. It is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families.
61–65 Victoria Road
Call: 0808 800 0004
Breast Cancer Care
Breast Cancer Care works hard to provide the best information and support for people affected by breast cancer, wherever they are in the UK. It provides information on living with and beyond breast cancer, offers emotional and practical support through its services and helpline, brings people affected by breast cancer together and campaigns for improvement in the standards of support.
Breast Cancer Care
5–13 Great Suffolk Street
Call: 0808 800 6000
Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust is the only UK charity dedicated to women affected by cervical cancer and cervical abnormalities. Its vision is a future where cervical cancer is a thing of the past. Its mission is to see cervical cancer prevented, provide the highest quality information and support and campaign for excellence in cervical cancer treatment and prevention.
Jo’s Cervical Cancer Trust
49–51 East Road
Call: 020 7250 8311
Riprap was developed especially for teenagers who have a parent with cancer. With riprap, teens can learn more about cancer and its treatment and read the real-life experiences of other young people. Riprap was created by a team from the University of Sheffield in 2003, and merged with Maggie’s in July 2014.
Western General Hospital
Online contact form: http://www.riprap.org.uk/contact.asp
Teenage Cancer Trust
The Teenage Cancer Trust creates world-class cancer services for young people in the UK, providing life-changing care and support so young people don’t have to face cancer alone. Its services put the needs of young people first and allow them to face the challenges together. Its 28 specialist units within NHS hospitals bring young people aged 13–24 together, to be treated by teenage cancer experts in a place designed just for them.
Teenage Cancer Trust
93 Newman Street
Call: 0207 612 0370
CLIC Sargent fights tirelessly for children and young people with cancer, often when they feel they can’t. It does this individually, locally and nationally, so that children and young people can focus on the important things, like getting well. CLIC Sargent also works to improve support through research and campaigning for policy change.
No. 1 Farriers Yard, Assembly London
77–85 Fulham Palace Road
London W6 8JA
Call: 0300 330 0803
Online contact form: https://www.clicsargent.org.uk/forms/enquiry-form
The Mesothelioma Center
The Mesothelioma Center connects people with the resources they need to understand and fight asbestos-related disease – whether that’s mesothelioma, asbestos-related lung cancer or asbestosis. Its website and support group provides free information, resources and assistance to anyone affected by mesothelioma and asbestos exposure.
189 S. Orange Ave
Orlando, FL 32801
Mesothelioma.net provides information and advice to people living with mesothelioma in the USA. It specialises in connecting patients with doctors, helping US military veterans and advising on sources of financial aid.
440 Louisiana Street, Suite 1212
Houston, Texas 77532
Addison’s Disease Self-Help Group
The Addison’s Disease Self-Help Group (ADSHG) is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland. The organization was established in 1984 and is a registered charity, working to support its members and promote better medical understanding of this rare condition.
PO Box 1083
National Ankylosing Spondylitis Society
The National Ankylosing Spondylitis Society is the only UK registered charity dedicated to Ankylosing Spondylitis. It is fighting to improve treatment and care for the more than 200,000 people with AS in the UK. It funds research and provides support, advice and information to people with the condition. NASS believes that people who understand their AS and how best to manage it will have the best possible outcome.
4 Albion Court
Call: 020 8741 1515
The Behçet’s Syndrome Society
The Behçet’s Syndrome Society has represented Behçet’s disease patients and their carers in the UK for more than 30 years. The organization exists for those with the disease and those not yet diagnosed but who think they may have it. It provides financial aid; fosters education, collaboration and networking; and helps create patient support groups.
Behçet’s Syndrome Society
152–160 City Road
Call: 0345 130 7329
Crohn’s & Colitis UK
Crohn’s & Colitis UK is the UK’s leading charity in the battle against Crohn’s disease and ulcerative colitis. Founded as a patients’ association in 1979, it works to make life better for the 300,000 people in the UK with Crohn’s disease, ulcerative colitis and other forms of inflammatory bowel disease. It has 50 local groups across the nation, which arrange educational meetings, generate publicity and organize fundraising.
Crohn’s and Colitis UK
45 Grosvenor Road
Call: 0300 222 5700
The National Rheumatoid Arthritis Society
The National Rheumatoid Arthritis Society is the voice of people affected by rheumatoid arthritis across the UK. Founded in 2001, it is the only UK charity devoted specifically to RA, and in 2014 it launched a service for families, children, young people and adults affected by juvenile idiopathic arthritis. The organization designs, coordinates, funds and delivers a comprehensive and wide range of high-quality products and member services for everyone affected by RA and JIA.
4 Switchback Office Park
Call: 0800 298 7650
Lupus UK is the national charity helping people with the presently incurable immune system illness lupus. It supports some 5,500 members through its regional groups and advises many others on the symptoms prior to diagnosis. Its mission is to empower people by providing information about lupus and offering support so that everyone’s voice can be heard and the condition can be diagnosed and managed effectively.
St James House
Call: 01708 731251
The ME Association
The ME Association provides information, support and practical advice for people, families and carers affected by myalgic encephalopathy (ME), chronic fatigue syndrome and post-viral fatigue syndrome. It also funds and supports research and offers education and training.
7 Apollo Office Court
Call: 0844 576 5326
Positively UK provides peer-led support, advocacy and information to women, men and young people living with HIV to manage any aspect of their diagnosis, care and life with HIV. Positively UK stands up for the dignity and rights of anybody with or affected by HIV, and provides people living with HIV practical and emotional support to help them lead fulfilling lives free from isolation.
345 City Road
Call: 020 7713 0444
The Ehlers-Danlos Society
The Ehlers-Danlos Society is striving towards a time when all those with Ehlers-Danlos syndrome achieve their right to an early diagnosis, good management, respect and recognition for their condition. The society aims to bring together and unite the EDS community by providing annual conferences to distribute information and create opportunities to interact.
The Ehlers-Danlos Society – Europe
35–37 Ludgate Hill
Call: 0203 887 6132
Action for M.E.
Action for M.E. strives to end the ignorance, injustice and neglect faced by people with ME. It does this by meeting the need to improve the lives of people with ME now, while taking action to secure change for the future. Alongside providing information, support and advice to people to help improve their health and wellbeing, the organization works with professionals to enhance the care and support that people with ME receive and funds pilot research projects to advance knowledge of the illness.
42 Temple Street
Call: 0117 927 9551
Mind provides advice and support to empower anyone experiencing a mental health problem. It campaigns to improve services, raise awareness and promote understanding. Its local services across England and Wales include supported housing, crisis helplines, drop-in centres, employment and training schemes, counselling and befriending.
Cefn Coed Parc
Call: 0300 123 3393
British Heart Foundation
British Heart Foundation is the UK’s number one heart charity, striving to win the fight against cardiovascular disease. It is also the UK’s largest independent funder of cardiovascular research. It campaigns for better services for heart patients and helps millions of people every year with up-to-date information about heart disease.
British Heart Foundation
2096 Coventry Road
Call: 0300 330 3311
The Circulation Foundation
The Circulation Foundation is the only UK charity dedicated to vascular health. Its vision is a society free of vascular disease (which is as common as cancer and heart disease) and its mission is to promote awareness of vascular conditions and support vital research. It aims to create a better understanding of the importance of healthy arteries and veins, how this can be achieved and how it can lead to longer, healthier lives.
Call: 020 7205 7151
HealingWell.com is about living mindfully and healing well with chronic illness. It is a community where people come together, reach out, find support and understanding and share what works for them with others. HealingWell.com features a thriving support community, blog, videos, newsletters, articles and resources to help you actively manage the challenges of living with chronic illness. The goal is simple: to help you take control of your illness and start ‘healing well’.
SANE provides emotional support and information to anyone affected by mental illness, including families, friends and carers. Its mental health support services are completely confidential, and offer non-judgemental emotional support regardless of the problem. SANE’s services and support options are designed to provide a range of ways of getting and giving support, including self-help and self-management strategies.
St. Mark’s Studios
14 Chillingworth Road
Call: 0300 304 7000
healthtalk.org provides free, reliable information about health issues by sharing people’s real-life experiences. Visit the healthtalk site to watch people sharing their stories about cancer, autism, motor neurone disease, pregnancy, drugs, depression and more. The organization aims to help patients and their loved ones navigate the challenges of health conditions, support healthcare professionals in providing patient-focused care and promote better communication between patients and health professionals.
The Mighty publishes real stories by people facing serious health conditions. It aims to build a brand and a community around these people, so that having a disability or a disease doesn’t have to be isolating. The Mighty believes people are stronger when they face adversity together, and is creating a safe platform for this community to tell their stories, connect with others and raise support for the causes they believe in.
The Samaritans aren’t only for the darkest nights of the soul. Whenever you need to talk, they’re available, 24/7. Unlike the more formal routes of counselling, there are no waiting lists or assessments. It’s completely confidential (they won’t even pass on your name) and you can talk at your own pace. They won’t rush or interrupt you.
PO Box 9090
Call: 116 123
Rehab 4 Alcoholism
Rehab 4 Alcoholism is a free and impartial helpline for people troubled with drug and alcohol issues. Rehab 4 Alcoholism aims to save lives by stopping addiction before it becomes too late.
Tel: 0800 111 4108