Frequently Asked Questions
Answers to Frequently Asked Questions about TM
Booklet from the Brain and Spine Foundation
A booklet on Transverse Myelitis
Bladder & Bowel Community Information, support and help line for bladder and bowel control problems. Go to their site to get a 'Just Can't Wait' card to gain access to toilets not always open to the public or to jump queues. Keys to disabled toilets are readily available from several sources - search on 'RADAR keys' to purchase one.
British Pain Society Multidisciplinary professional organisation 020 7269 7840
Continence Foundation Treatment of incontinence
Depression Alliance Information and support services
Fatigue Management Tips
Family Relationship Coaching offered by Return to Wellness
A Guide to Encephalitis in Children (relevant for ADEM)
A Guide to Encephalitis in Adults (relevant for ADEM)
InContact Incontinence products and supplies.
Mobility Product Guides, and help to remain active.
Pain Concern Information, help line, forum and magazine
0300 123 0789
Pain Support UK Find advice and support - and relief from pain.
Information on neuropathic pain from the Brain and Spine Foundation's website.
Health Related Organisations
Association of Chartered Physiotherapists Interested in Neurology (ACPIN)
Brain & Spine Foundation UK charity giving info and support
Devics Association UK based info site (sponsored)
Encephalitis Society relevant for ADEM
List of UK neurology departments and spinal units
Neurological Alliance Collective voice for over 70 organisations
Neuromyelitis Optica (NMO) NHS NMO specialised services
Spinal Injuries Association (SIA) who have a variety of services including an Nurse Advocacy Service for people going into a hospital that may not know how to care for someone with spinal injuries.
Transverse Myelitis Association USA / worldwide member organisation for those with TM and related conditions
Transverse Myelitis Society UK based member organisation for those with TM and related conditions
Carers Direct (NHS) Information, advice and support
0808 802 0202
Carers Trust Action, help and advice
0844 800 4361
Carers UK The voice of carers
0808 808 7777
Contact a Family For families with disabled children
0808 808 3555
Home Start Support and friendship for families coping with children with illness or disabilities
0800 686 368
TM Society Leaflets
Organisations for Disabled Needs
Disabled Living Foundation Impartial advice on equipment
0845 130 9177
The Disability Equipment Register Used equipment listing
Disability Now Magazine Website for, about and by disabled people
Creative Minds - offers activities such as gardening, art and drama
disabled ramblers Access to the countryside for the disabled
Euan's Guide - recommended to find disabled friendly places
Gardening for the Disabled Trust Grants to people to continue gardening despite disability or advancing illness
Recovery College - offers skills for various life skills geared to people recovering from long term health conditions
Stitchlinks Therapeutic benefit of knitting
Wheelpower British Wheelchair Sport
Disabled Motoring UK Campaigning charity for disabled drivers, passengers and Blue Badge holders
Driving with a Disability General Information from GOV.UK site
0870 600 0301
Motability Car Scheme Enables disabled people to use their government-funded mobility allowance to lease a new car, scooter or powered wheelchair
0845 456 4566
Mobility aids: Just Mobility News, reviews, vehicle sales
and directory services for the mobility market
01923 265 577
Disabled Holiday Information
Carers UK Links to further sites for disabled holidays and breaks
NHS NMO Links to further sites and helpful advice
Spinal Injuries Links to sites helpful for planning a holiday
HertsActionDisability List of accessible holiday providers
Conference presentations - YouTube
The TM Association has loaded over 250 presentations from various conferences on to YouTube. Talks cover a wide range of subject matter from research to symptom management.
The TM Society had a UK Conference in April 2011 - the videos can be found on the YouTube Playlist.
Johns Hopkins TM Center 2013 Regional Transverse Myelitis Clinical Care Symposium - June 15, 2013 YouTube Playlist.
The Rare Neuroimmunologic Disorders Symposium - Dallas, Texas October 2013 - introductory comments and download or simple playlist here.
Programmes and some of the presentations from our May 2014 one day conferences in Oxford and Liverpool.
Acute Flaccid Myelitis
Link to the AFM day, with presentations, at Birkdale Clinic in February 2020.