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Patient and Carer Support and Information

The Trust has information regarding support for specific liver conditions in the ‘Who else can help?’ section of the publication or website page for that condition – see Liver conditions.

There is a directory of support groups and information on joining our Health Unlocked forum in the Find Support section of this website.

Other organisations offering support and information

Please note the Trust provides links to other information but is not responsible for the accuracy of information on any sites we do not manage and by providing a link is not necessarily giving any endorsement of that site.

Abbeycare
Abbeycare is a provider of specialist residential alcohol treatment and detoxification centres, with rehabs in Scotland and Newmarket, just outside of London. We treat people suffering from alcoholism and the problems associated with alcohol dependence and alcohol misuse.

www.abbeycarefoundation.com

Action on Addiction – The M-PACT(UK) Project
M-PACT (UK) is the result of a growing awareness that services for children and young people suffering the consequence of parental substance misuse have been limited, fragmented or non-existent across the UK. Our main objective is for the programme to be available to as many children and young people as possible to help to improve their quality of life.
www.actiononaddiction.org.uk

Alpha-1 Awareness UK
UK Charity supporting sufferers of Alpha 1 Antitrypsin Deficiency, a genetic condition, which in adults affects the lungs and in infants, children and some adults affects the liver, in severe cases liver transplants are needed.
www.alpha1awareness.org.uk


Alpha-1 Foundation US
A not-for-profit Florida corporation dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. Alpha-1 is a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children & adults.

www.alphaone.org

Alpha-1 info
German organisation and website (in English) with comprehensive information for patients with Alpha-1 Antitrypsin deficiency about the diagnosis and treatment of the disorder and giving tips on adapting your lifestyle to cope with the condition.
www.alpha-1-info.com/html/patient-home.htm

Alpha-1 UK Support Group
UK support group run by alphas for alphas, to help and advise fellow sufferers, and backed by the UK’s leading medical experts in the field of Alpha-1 Antitrypsin Deficiency. Provide support and education for individuals, families, carers and friends who are affected directly or indirectly by Alpha-1 Antitrypsin Deficiency and to grow a social network for patients, by providing a discussion group focusing on how better to cope with their condition, aiming towards improving quality of life.

www.alpha1.org.uk

AMMF – the Cholangiocarcinoma charity
AMMF is dedicated to raising awareness, providing information to those who need it, either individually or via their website, and supporting research into the causes, better diagnostic tests and more effective treatments for this devastating disease.
www.ammf.org.uk

BACP British Association of Counselling and Psychotherapy
 An online directory to search for a professional counsellor in your area, or you can telephone to be sent a list.

www.bacp.co.uk

Berkshire Healthcare Healthmakers
Berkshire Healthcare HealthMakers is a group of volunteers with long term health conditions living in Bracknell and Ascot who; offer peer support to teach others how to manage their long term health conditions, deliver training to help others become HealthMakers, and make a difference and act as Patient Partners who work closely with local health services to improve patient care and quality of life. To find out more or see what self management courses are available visit their website.
www.berkshirehealthcare.nhs.uk

Carers Direct
Free, confidential information and advice to help you as a carer. Lines are open 8am – 9pm Monday to Friday, 11am – 4pm at weekends. Calls are free from UK landlines.
www.nhs.uk/Conditions/social-care-and-support-guide/Pages/what-is-social-care

Care Oncology Clinic
A private clinic based in London providing cancer treatments to target the metabolic processes and pathways of cancer cells that may also complement standard care therapy. 
http://careoncologyclinic.com/

Children’s Liver Disease Foundation (CLDF)
Charity concerend with care for babies and children with liver disease and their families through support, information and research in the UK.
www.childliverdisease.org

Counselling Directory
The purpose of the site to provide the UK with a counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs. This is a free, confidential service. The website also contains a number of sections on emotional disorders (types of distress section) and provides some useful statistics.

www.counselling-directory.org.uk

Disability Rights UK
An organisation working for equality of rights for anyone with a disability.
www.disabilityrightsuk.org

Gillian Advocates
Gillian Advocates provides information about cholangiocarcinoma (another name for bile duct cancer) and has produced information to download from it’s website.

www.gillianadvocates2.org.uk

Help 4 Addiction
Organisation offering professional help, advice and treatment services for drug and alcohol addiction.
www.help4addiction.co.uk

Hepatitis Scotland
Hepatitis Scotland is the national third sector organisation in Scotland, funded by the Scottish Government to provide support and leadership to voluntary sector organisations in tackling viral hepatitis in Scotland.

www.hepatitisscotland.org.uk

Hope Support Services
Organisation supporting young people when a close family member is diagnosed with a life-threatening illness.
www.hopesupport.org.uk

Hypnotherapy Directory
Lists qualified/registered hypnotherapists for support with issues such as alcohol dependency or weight loss.
www.hypnotherapy-directory.org.uk

Life Coach Directory
Directory of life coaches across the countrywho for support in a range of areas.
www.lifecoach-directory.org.uk

Marie Curie 
Marie Curie Nurses provide free nursing care to cancer patients and those with other terminal illnesses in their own homes.
www.mariecurie.org.uk

National Organisation for Foetal Alcohol Syndrome UK (NOFAS)
Organisation supporting people affected by Foetal Alcohol Spectrum Disorders (FASD) and their families and communities. It promotes education for professionals and public awareness about the risks of alcohol consumption during pregnancy.
www.nofas-uk.org

Ocean Recovery Centre
A national provider of mental health and addiction treatment with therapies provided on an inpatient or outpatient basis.
www.oceanrecoverycentre.com

Self Management for Life UK
Self Management For Life courses are FREE and help people to improve their health and wellbeing by learning new skills to manage their condition on a daily basis. People who have already attended courses have told us it has helped them to deal with their pain, tiredness, feelings of depression, frustration and other difficulties that may come from living with a long-term condition.

www.selfmanagementuk.org

The Haemophilia Society UK
National charity that provides information and support for people affected by haemophilia, von Willebrand’s and related inherited disorders.
www.haemophilia.org.uk

The James Lind Alliance
Charity which aims to identify the most important gaps in knowledge about the effects of treatments. It has been established to bring patients and clinicians together in ‘Working Partnerships’ to identify and prioritise the unanswered questions that they agree are most important.

www.lindalliance.org

The Patients Association
Charity providing patients with an opportunity to raise concerns and share experiences of healthcare. Through their Helpline, correspondence and research they learn from patients the issues that are of concern and work towards improving healthcare.

www.patients-association.com