The Metabolic Team at Birmingham Children's Hospital

The Birmingham Children’s Hospital is the fourth NCG-designated Lysosomal Storage Disorders paediatric centre in the UK (existing centres are in London, Manchester and Cambridge) and will now offer comprehensive, national diagnosis and treatment for children with lysosomal storage disorders in addition to the service already provided for other rare disorders. The unit is already well established as one of the three major centres for rare metabolic disorders in the United Kingdom.

The multidisciplinary metabolic team, led by 4 Consultants Dr. Anupam Chakrapani, Dr Chris Hendriksz, Dr Suresh Vijay and Dr Paul Gissen, it includes clinical nurse specialists, dieticians, biochemists, a pharmacist, link worker and administrative staff with input from several paediatric sub-specialties. Long-term care is provided in conjunction with community-based teams and in close liaison with family support organisations.

Around 1,400 patients attend the metabolic unit and about 150 of these are children who have a lysosomal storage disorder. Only about 10 per cent of these children will be suitable for treatment with current drugs. With a lot of research in the pipeline those with therapies will increase. The unit is involved in research and is actively contributing to the further education of other professionals that may come across these patients.

Please enter the section of the site most relevant to you.

There is very little evidence base for the management of inborn errors so this website has been written taking account of what is regarded as the current best practice. Statements and presentations have been scrutinised carefully but there may still be errors and represent the views of the authors. Furthermore new evidence at any time can invalidate some of the information on this site. The main aim of this website is to increase public awareness of these rare disorders and to act as a focus point for patients treated in our centre.  No liability whatsoever can be taken as a result of using this information.

Please make sure that you agree with this ethos before accessing any of the areas.

FEEDBACK

If you have problems, find errors or have any suggestions to improve the information we would very much like your feedback.