Local Health Care

 

The A-T Specialist Clinics will give advice and recommendations to your local health care teams however children and adults will still need to be seen and have input from their local health care professionals. For example:

  • Paediatrician
  • Neurologist
  • Respiratory Physician
  • Immunologist
  • Occupational Therapist
  • Physiotherapist
  • Speech and Language Therapist
  • Dietitian

Clinical guidance

In October 2014 the A-T Society published the first ever formal guidance document on the clinical care of children with A-T. The clinical guidance document Ataxia-telangiectasia in children sets out in detail the assessments and the care that a child with A-T should recieve.

Detailed guidance can be found in the guidance document itself, however, we strongly recommend the following form part of the care package:

  • Respiratory care: A respiratory review at least every three months, and more frequently if the child is unstable.
  • Neurology: A paediatric neurodisability review at least every 6 months, and more frequently if the child is unstable. A local paediatric neurology review at least every year, or more often if support is needed by the neurodisability paediatrician.
  • Immunology: In those children where recurrent infections are related to immune deficiency, local immunologist input is recommended. This is essential for children who may need to commence immunoglobulin replacement therapy.
  • Vaccines: As part of your immunology management you will be advised to have certain vaccines, for more detailed information please see our Vaccines Fact Sheet
  • Speech and language therapy and diet: Regular assessments by a speech and language therapist, and also dietetic review.
  • Physiotherapy: Regular assessment and review.
  • Occupational therapy: Regular assessment and review.

Please do pass on a copy of this guidance to your local health care professionals.

This guidance has been set for children, however we hope to also produce guidance for adults (in the meantime the children's guidance is relevant and can be helpful for the care of adults who have A-T)

 If you need further information please contact our 'Support Team' Kay Atkins (Family Support Manager) or Anne Murray (Family Support Co-ordinator) on 01582 760733 or email Support for advice.

 

 

 

  

The garden of the A-T clinic in Nottingham

The garden of the A-T clinic at the City Hospital, Nottingham

 

  

Team around the child

Team around the child meeting

 

   

Cover of clinical guidance document

The clinical guidance document