List of organisations by disease

Information about organisations for different conditions and disease groups

Life expectancy for both men and women has continued to rise and has increased by over 30 years in the last century and is expected to continue to rise by another 3 years over the next decade.  In 2008 there were 509,090 deaths registered in England and Wales.  As we get older the causes of death change, and for the very old there may be more than one condition that affects us and contributes to our death.

The major causes of death in the UK are cancers, circulatory disease (including heart attack and stroke) respiratory disease, injury and poisoning, nervous system (for example Motor Neurone Disease) and mental or behavioural disorders (including suicide).

There are many organisations that can help you learn more about these diseases and some of these are signposted below. These sites will provide you with information about the most common causes of death in the UK. If you have a very rare condition your doctor may be able to direct you to more specific organisations.

The disease groups are listed in alphabetical order.

Alzheimers Disease – see also Dementia

The Alzheimer's Society is the UK's leading care and research charity for people with dementia and those who care for them. It works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland. Many of its 25,000 members have personal experience of dementia, as carers, health professionals or people with dementia themselves.

http://alzheimers.org.uk/

for dementia is a national charity, committed to improving the quality of life for all people affected by dementia.

http://www.fordementia.org.uk/about-us/ 

Cancer

Around 285,000 new cases of cancer are diagnosed each year in the UK. Although cancer is one of the major causes of death in the UK, there are now many people who make a full recovery. The following websites provide information about cancer and about the different types of cancer.

Cancer Research UK is a leading charity dedicated to beating cancer by improving the understanding of cancer through research and developing better ways to prevent, diagnose and treat the disease. Their websites have a wealth of information about cancer.

http://www.cancerresearchuk.org/ 

Macmillan Cancer Support aims to help improve the lives of people affected by cancer, both those living with cancer and also their families and carers. Their primary focus is to reach and improve the lives of everyone living with cancer by providing practical, emotional and financial support.

http://www.macmillan.org.uk/Cancerinformation/Cancerinformation.aspx 

Marie Curie Cancer Care employs more than 2,700 nurses, doctors and other healthcare professionals to provide care to around 25,000 terminally ill patients in the community and in hospices, along with support for their families.

They care for people with cancer and people with other life limiting conditions. They also provide a comprehensive list of organisations that can help with specific conditions.

http://www.mariecurie.org.uk/whatwedo/patient-carer-information/support-groups-information-links/Other+organisations.htm 

Chronic Obstructive Pulmonary Disease

COPD covers emphysema, chronic bronchitis, asthmatic bronchitis and other airways diseases. But it does not cover lung cancer. COPD kills 30,000 people a year in England and Wales.

Breathless with Emphysema and COPD is a site is primarily for patients and especially for those suffering from chronic Emphysema, Asthma or Bronchitis, now known as COPD. It 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.

http://www.emphysema-copd.co.uk/ 

The British Lung Foundation is a UK charity working for everyone affected by lung disease. They focus their resources on providing support for people affected by lung disease today. They work in a variety of ways, including funding world-class research, to bring about positive change, to improve treatment, care and support for people affected by lung disease now and in the future.

http://www.lunguk.org/abouttheblf

NHS Improvement has resources, guidelines and information about COPD and lung disease which can be accessed here:

http://www.improvement.nhs.uk/lung/LungHome/EndofLifeCare/tabid/111/Default.aspx

Dementia

The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Dementia currently affects 822,000 people in the UK (17% higher than previous estimates) and will pass the 1 million mark before 2025 (Dementia 2010, Alzheimer’s Research Trust, 2010).

The symptoms include a decline in memory, reasoning and communication skills and a gradual loss of skills needed to carry out daily activities. Causes include Alzheimer's disease and sometimes as a result of a stroke.

The Alzheimer’s Society provides a lot of information on dementia. The following link will take you directly to the dementia section of their website:

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200120

for dementia is a national charity, committed to improving the quality of life for all people affected by dementia.  In some areas they provide Admiral Nurses who are specialist mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Working collaboratively with other professionals, Admiral Nurses seek to improve the quality of life for people with dementia and their carers. They use a range of interventions that help people live positively with the condition and develop skills to improve communication and maintain relationships.

http://www.fordementia.org.uk/about-us/ 

Heart disease

Heart disease accounts for approximately 20% of all deaths in the UK. The British Heart Foundation works with people to reduce the risk of heart disease and how to live with heart disease. They have 5 main areas of work:

  • Investing in pioneering research, and support and care for heart patients
  • Providing vital information to help people reduce their own heart health risk
  • Helping attain the highest possible standards of care and support for patients 
  • Work with government to establish policies that minimise the risk of developing heart and circulatory disease
  • Working to reduce the inequalities in the levels of heart disease across the UK

 The following link takes you to their information section:

http://www.bhf.org.uk/about-us/what-we-do/information-objective.aspx

The National Heart Forum (NHF) is a leading alliance of over 60 national organisations working to reduce the risk of coronary heart disease and related conditions such as stroke, diabetes and cancer. Their  website is designed to help you find out more about what they do, make contact with the NHF member organisations and discover more about avoidable coronary heart disease and related conditions in the UK.

http://www.heartforum.org.uk/

NHS Improvement has resources, guidelines and information about heart disease which can be accessed here:

http://www.improvement.nhs.uk/heart/heartfailure/Home/PatientPathways/PatientPathwayMenu_3/SupportivePalliativeCare.aspx

HIV/AIDS

Although the numbers of people diagnosed with HIV and AIDS has increased over the last decade from 3000 to 7500 the number of deaths has reduced from 2000 to 600 a year.

NAM (formerly National AIDS Manual) provides information to people who are HIV positive and to the professionals who treat, support and care for them. NAM is a community based HIV information provider based in London, in the UK, but their information is known and used across the world. 

They support people living with HIV to live longer, healthier lives and provide information to enable people to:

  • take control of their lives and health care
  • understand and adhere to their HIV treatment
  • develop better dialogues with their healthcare staff
  • live longer, healthier and better quality lives

http://www.aidsmap.com

Terrence Higgins Trust was one of the first charities to be set up in response to the HIV epidemic and has been at the forefront of the fight against HIV, and improving the nation's sexual health ever since. They provide information and advice about HIV and AIDS, including information on what local services are available, such as counselling, group support and practical assistance.

http://www.tht.org.uk

Kidney/renal disease

Renal/kidney disease accounts for 1-2% of deaths in the UK.

The UK National Kidney Federation (NKF)provides medical and practical information, and hosts a chatroom. The NKF is the national charity in the United Kingdom Run by Kidney Patients for Kidney Patients. The Federation’s aim throughout the UK is to promote both the best renal medical practice and treatment, and the health of persons suffering from Chronic Kidney Disease (CKD) or Established Renal Failure (ERF).The NKF also supports the related needs of those relatives and friends who care for kidney patients. The following link takes you to their information section.

http://www.kidney.org.uk/Medical-Info/

Liver disease

Liver disease is the 5th commonest cause of death in the UK and the numbers are increasing. The main causes of liver disease are alcohol, hepatitis B and C and obesity.

The British Liver Trust offers information leaflets and a helpline, and hosts a chatroom. Their aim is to reach out to as many people as possible by providing information and support, and lobbying for the services that people with liver disease need.

http://www.britishlivertrust.org.uk/home.aspx

Motor Neurone Disease

The Motor Neurone Disease (MND) Association is the only national organisation in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them.

It is a charity that works to help people with MND secure the care and support they need, while promoting research into causes, treatments and a cure.

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

http://www.mndassociation.org/ 

Multiple Sclerosis

The Multiple Sclerosis Society funds MS research, runs respite care centres, provides grants (financial assistance), education and training on MS. It produces numerous publications, provides information, runs a freephone specialist helpline and holds discussion forums.

They are committed to bringing high standards of quality health and social care within reach of everyone affected by MS. They encourage and support medical and applied research into the cause and control of MS.  

http://www.mssociety.org.uk/ 

The Multiple Sclerosis Resource Centre (MSRC) is a charity committed to supporting anyone affected by Multiple Sclerosis through access to unbiased information and advice. Their approach is to encourage individuals to make choices that are appropriate to their daily lives, empowering them to maximise their potential. MSRC offers information, as well as message boards and chat rooms.

http://www.msrc.co.uk

The MS Trust is a UK charity, providing information for anyone affected by multiple sclerosis, education programmes for health professionals, funding for practical research and campaigning for specialist multiple sclerosis services.

http://www.mstrust.org.uk/

Parkinson’s Disease

Parkinson's by itself does not directly cause people to die. With the treatment that is now available, life expectancy for someone with Parkinson's is fairly normal and none of the drugs that are used for Parkinson's have any serious side effects that could cause death. However, occasionally in people who are seriously disabled (usually those who have had Parkinson's for many years), their general physical and mental condition can either cause or exacerbate other illnesses and so contribute to the final cause of death. For more information go to: 

http://www.parkinsons.org.uk/

Stroke

The Stroke Association is the only UK wide charity solely concerned with combating stroke in people of all ages. It funds research into prevention, treatment and better methods of rehabilitation, and helps stroke patients and their families directly through its Rehabilitation and Support Services. These include Communication Support, Family and Carer Support, information services and welfare grants. They also campaign, educate and inform to increase knowledge of stroke at all levels of society, and act as a voice for everyone affected by stroke.

The Stroke Association produces a number of publications including patient leaflets, Stroke News (a quarterly magazine) and information for health professionals.

http://www.stroke.org.uk/ 

Suicide

The suicide rate in England and Wales has fallen in recent years and for the general population is now the lowest on record. However, suicide is still the second most common cause of death in men aged 15-44 years, behind accidental death. There were a total of 4,336 suicides in England and Wales in 2005 (three-quarters of which were by men). Suicide continues to be a major public health issue, and particularly in those with mental distress.

The majority of people who die by suicide make contact with health professionals within a relatively short time before death. For patients with mental ill health, relationships with health professionals appear to be particularly important; indeed, negative relationships have been cited as a key factor precipitating death by suicide (discussed in more detail below).

Mind helps people to take control over their mental health and to make it possible for people who experience mental distress to live full lives, and play their full part in society. They provide information and advice, training programmes, Mind in your area, grants and more. Go to:

http://www.mind.org.uk/help

Netdoctor You can also get information about depression and suicide, how to identify someone who is depressed and what you can do to help from:

http://www.netdoctor.co.uk/menshealth/facts/depressionsuicide.htm

The Samaritans provide confidential emotional support 24 hours a day. If you feeling suicidal or have been affected by the suicide or death of someone else go to:

http://www.samaritans.org/

Other organisations that can help:

Sue Ryder Care provides compassionate care for people with palliative, end of life and long-term needs. In addition to providing care for people near the end of their life they offer residential and nursing care for people living with neurological conditions such as stroke, brain injury, multiple sclerosis, Huntington's disease, Parkinson's disease and motor neurone disease. Many of the people affected by these conditions are in their 30s and 40s and may need care for 10, 20 or even 30 years.

Sue Ryder Care specialise in establishing flexible services aimed at supporting people throughout their illness. They help people to maintain their independence through a range of services to support those living with long-term neurological conditions.

They provide three healthcare service models 

  • health and social care packages within the home environment
  • palliative and end of life multidisciplinary services operated from 6 hospices
  • neurological complex care services operated from 8 residential centres

They work in partnership with health and social care professionals to offer person-centred care. Their approach aims to meet the needs of the physical condition and wellbeing of the people they care for while supporting carers, friends and families. 

http://www.suerydercare.org

Help the Hospices are a leading charity supporting hospice care throughout the UK. If you are a patient, carer or have an interest in hospice and palliative care the following link will provide information.

http://www.helpthehospices.org.uk/

Awareness Week Events

There are hundreds of Dying Matters Awareness Week events going on nationwide. View them here, or publicise your own. 

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