Information on specific conditions, treatments and procedures

  • Condition-specific voluntary organisations are major providers of information to people affected by neurological conditions. Those affected often report that this information, usually produced with the involvement of people affected by the same condition, is the most effective in addressing their information needs.
  • Information produced by voluntary organisations is usually checked by medical advisers.
  • Much of this information is free to download from the organisations’ websites and usually includes fact sheets on a wide range of issues.
  • Some of the information from some of these organisations is available in languages other than English.
  • Many of these organisations also have telephone helpline services where people can make specific enquiries and access emotional support.
  • In addition these organisations are often the first point of call to find local support groups.

The best way to search for a neurological condition specific organisation is to use the Neurological Alliance site which provides an alphabetical list of conditions and organisations. 

The Long-term Medical Conditions Alliance lists organisations concerned with a wide range of long term conditions. 

The Brain and Spine Foundation produces booklets on a range of neurological conditions, including some of the rarer conditions. The Foundation also produces information on procedures for diagnosing and treating some neurological conditions.
The following links will take you to sources of materials on conditions and treatments that have been checked by doctors and others. 

NHS Direct has information on a range of conditions. 

Best Treatments is currently run by the British Medical Journal (BMJ) and has information on many long-term conditions for patients and for health professionals. The information is drawn from Clinical Evidence - another BMJ site. It also includes information about procedures. 

Patient UK links to information about a huge range of conditions which has been checked by doctors. Some is translated, (but not information on neurological conditions). Also lists national (and international) support organisations.

Prodigy, now part of the National Library for Health, is an up-to-date source of clinical knowledge that can help healthcare professionals, and patients, in managing the common conditions generally seen in primary and first-contact care. This knowledge is available in a variety of formats including full guidance, quick reference guides, and patient information leaflets that cover acute and chronic illnesses, and disease prevention. Around 200 topics are covered, including many of the conditions that can be managed by non-medical prescribers. The link takes you directly to an alphabetical listing of patient information leaflets that can be downloaded and printed. 

The National Institute for Health and Clinical Excellence (NICE) guidance on various technologies (drugs and devices), and their guidelines for treating and managing a condition, are available in versions designed for professionals, and in leaflets produced for patients and the public. These are available for most of the appraisals and guidelines NICE has produced and can be downloaded in pdf format. www.nice.org.uk/page.aspx?o=cns takes you to the central nervous system section (note guidance on Head Injury comes under injury and accidents injury and accidents section). 

The Australian NSW Multicultural Health Communication Service provides information and services to assist health professionals to communicate with non English speaking communities. The Department of Health in NSW endorses the multilingual health information published on the website. There are over 400 publications on health in a wide range of languages. You can search by language to see what information is available in a particular language (Note: some will be specific to the Australian context). 

Rare and less common conditions 
Contact a Family has a directory of rare conditions including information about support groups where they exist. 

The Brain and Spine Foundation produces booklets on a range of neurological conditions, including some of the rarer conditions.

Orphanet is a database of rare diseases and orphan drugs.

Medicines and medical devices 
The Medicines and Healthcare products Regulatory Agency (MHRA) provides information and advice on medicines and medical devices, including side effects of medicines, and provides advice on using herbal medicines.

Complementary therapies
People affected by neurological conditions consistently said that they wanted more and better information about complementary therapies that could be helpful in managing their condition or alleviating symptoms. Many condition specific organisations  provide information about complementary therapies and their particular application to the condition e.g. the MS Society publishes a booklet on complementary and alternative medicine, as does the Parkinson’s Disease Society. 
The MND Association and Epilepsy Action also have information about complementary therapies.

Other sources of useful information on complementary therapies are:

The National Library for Health 
British Complementary Medicine Association  
Institute of Complementary Medicine

Complementary Healthcare: a guide for patients is produced by the Prince of Wales’s Foundation for Integrated Health and can be downloaded from their site.

Information on research and developing treatments
Some people affected by neurological conditions said that they wanted more information on the latest research and new and developing treatments. It is anticipated that the new Neurological Conditions library within the National Library for Health will support some of these information needs. Other useful sources are: 

PubMed has a facility to search for articles about new research by topic and disease area.

BBC is useful to check details of recent health stories on new treatments or treatment claims. 

The MS Society have a web page and regular publication which provides an overview of the current developments in MS research.