The Inherited White Matter Disorders (IWMD) Service is a highly specialised NHS England service for children and adults with genetic brain white matter disorders, also known as leukodystrophies.
The National Hospital for Neurology and Neurosurgery in London is the main IWMD centre for adult patients. The London team work in partnership with teams from Birmingham, Leeds and Salford, to streamline diagnosis, management and research projects for adult patients with IWMD.
Birmingham IWMD referrals
Referrals to the Birmingham IWMD Team are welcomed from specialised services in the West Midlands (i.e. Neurology, Metabolic Medicine, Clinical Genetics etc.) or from Neurology services from areas outside of the West Midlands.
Please write to the address below or ask the patient’s GP to make a referral to the Queen Elizabeth Hospital Birmingham through the advice and refer process.
Tom Hayton, Consultant Neurologist
Department of Clinical Neurosciences
Area 3
Floor 7
Queen Elizabeth Hospital
Birmingham
B12 2GW
Required referral information
Referring doctors are encouraged to include as much detailed information as possible regarding previous test results and other relevant information in the referrals. Patients should have blood test results for HIV, syphilis, hepatitis B, hepatitis C, aryl sulfatase, amino acids, very long chain fatty acids, as well as urine amino acids prior to referrals being submitted, to avoid unnecessary diagnostic delays.
Please tell us when (the year is usually enough) and where (which hospital) the patient had scans. It is likely that, in order to provide local support, we will ask for the patient to continue to be followed up by the referring consultant.
Assessment
Where possible, patients will be assessed in an outpatient clinic at Queen Elizabeth Hospital Birmingham and/or their case will be discussed at a virtual multidisciplinary team meeting with the London IWMD Team, which the referring consultant can also attend.
Diagnoised IWMD patients
Patients diagnosed with IWMD through our service will be enrolled in the IWMD Registry. The patient or their next of kin will be invited to add information to the registry, which will, hopefully, help us learn more about this range of rare conditions and, in time, contribute to the development of possible therapies.
Last reviewed: 14 May 2025