The need for a specialist national neurology service

What currently happens when deaf people acquire a neurological disability as a result of stroke, head injury, tumour or neurodegenerative diseases such as dementia or Parkinson’s disease?

Our research suggests that they are often subject to under diagnosis, late diagnosis or misdiagnosis. The consequences of this can be distressing for patient and family and lead to poor health outcomes and inefficient use of valuable NHS resources.

Why is assessment and diagnosis so poor for deaf patients?
  • Symptoms are often attributed to impoverished communication or missed by professionals without expertise in British Sign Language (BSL)
  • Assessment and diagnosis cannot proceed because communication between healthcare professionals and deaf service users is poor or absent. 
  • There are few suitable clinical assessment tools or outcome measures that have been developed for use specifically with the deaf population
  • There is no research-led system for assessment, intervention or evaluation of treatment outcome

Currently there is no permanent specialist provision. DCAL are however working with National Hospital for Neurology and Neurosurgery to pilot access for deaf patients to their diagnostic Cognitive Disorders Clinic. Newly developed cognition and memory tests for signers are used to support accurate diagnosis within the clinic. It is vital that this clinic is established on a permanent basis to ensure that deaf patients receive appropriate assessment and diagnosis

What can be done to improve diagnosis and treatment for deaf patients?
  • It is vitally important that a permanent national service for referral of Deaf people with suspected neurological and neuropsychiatric conditions is established. This should give deaf patients access to a specialised multidisciplinary team with expertise in neurology, neuropsychology, sychiatry, deafness and BSL
  • Effective and reliable diagnostic, assessment, intervention and evaluation tools using BSL
  • Use of technology to enable remote provision to distant and rural communities
  • Involving and training professionals in the health service and sign language interpreters
  • Developing an advisory service to facilitate the appropriate treatment and increased access to services of deaf patients, where treatment occurs within mainstream NHS services
  • Monitoring of referral, assessment, intervention and outcome
  • Making support services accessible to Deaf patients and carers