Useful Links for Patients

 Links to UK charities and other patient information sites

Brain and Spine Foundation - Neuropathic pain treatment information

 

The Brain Charity - Offers emotional support, practical help, and social activities to anyone with a neurological condition and to their family, friends and carers.  Includes practical telephone and email advice on welfare benefits

 

Carpal Tunnel - A site regularly maintained by a BPNS member with clinical and research interests in carpal tunnel syndrome, which has very detailed and up-to-date information on this common condition.

 

Cochrane - A global network who gather and summarise evidence from research in many medical conditions including treatments for many types of neuropathy and evidence for neuropathic pain management in multiple conditions.  This link takes you directly to the search site.

 

CMT-UK - Extensive information about CMT diagnosis and treatment.  Additional information available for members include publication library, archives of news and member-only events. 

Leaflets – What is CMT,  Living with CMT,  Anaesthetics Fact Sheet

 

CMT-Registry - Any patient with CMT in the UK is welcome to add themselves to this register of patients if they wish to be contacted about treatment trials and other research. 

 

 

 

Diabetes UK diabetic neuropathy site

 

GAIN (Guillain-Barré and Associated Inflammatory Neuropathies) - Help and advice on inflammatory neuropathies for patients and their relatives including a telephone helpline for residents of UK and Ireland.   Includes links to downloads on GBS in adults and in children, CIDP, anti-MAG neuropathy, IVIg and immunisation.

Leaflets – GBS & associated variants, CIDP and associated chronic variants, Other leaflets available here

 

James Lind Alliance - A site bringing together patients and clinicians to focus on uncertainties regarding treatments and other aspects of specific health conditions. You can consider developing or becoming involved in an established ‘Priority Setting Partnership (PSP)’ in a condition you have experience of or interest in.

 

Muscular Dystrophy UK - Not only providing infomration on musculadystrophies but also on neuropathies that cause muscle weakness, like CMT, and factsheets with a wide range of relevant information – from psychological and social issues to equipment and adaptations.

 

Motor Neurone Disease Association

 

Neurological Alliance - A collective voice for 80 organisations working together for people in England with neurological conditions.

 

Pain Concern - Information (via various media platforms) and support on all aspects of pain. Includes leaflets on neuropathic pain, self-management of foot pain and sleep.  Also has audio podcasts, Twitter and Facebook feeds.

Leaflets – Neuropathic pain,  Getting a good sleep, Foot pain,

 

Patient Information - A remarkably comprehensive site which includes information on peripheral neuropathy in general, neuropathic pain and also pages on autonomic neuropathy, diabetic neuropathy, diabetic amyotrophy, Charcot joints, femoral neuropathy, pes cavus, POEMS, ulnar neuropathy, tarsal tunnel and EMG. There are links for ‘related content’ - so for example, for neuropathic pain there are links to information about common drugs for pain, and a ‘decision aid’ which is a tabulated comparison of the effects of different neuropathic pain drugs. 

 

Physiotherapy - The Chartered Society of Physiotherapy website has a neuropathy section which includes links to papers on the role of physical activity in painful diabetic neuropathy and thoracic outlet syndrome.

 

British Polio Fellowship - A charity dedicated to helping people in the UK living with the late effects of polio and post-polio syndrome.  Includes information sheets on what this condition is and how to manage it.

 

Vasculitis UK - A comprehensive discussion of vasculitis for patients and professionals,  including neuropathy and treatment recommendations.

 

Foundation for Peripheral Neuropathy - An American charity concerned with all aspects of peripheral neuropathy.