Specialist centres

Specialist Centres for MPS and related Lysosomal Storage Diseases

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The Society continues to work collaboratively with the lead specialist centres in MPS and Lysosomal Storage Diseases (LSDs).

Since 2004 Mucopolysaccharide and related diseases including Fabry disease have been managed in England through National Specialised Commissioning (AGNSS). This designation changed almost overnight the patient’s right to be assessed and managed clinically at a recognised LSD specialist centre for children or adults and, where therapy is available to treat their disease, to be assessed against appropriate clinical guidelines. More information on Specialised Services can be found on NHS England’s website.

The NCG LSD specialist centres are:

PAEDIATRIC

London

Dr Ashok Vellodi/Dr Maureen Cleary/Dr Lara Abulhoul
LSD Team Metabolic Office
Level 7
Southwood Building
Great Ormond Street Hospital NHS Trust
Great Ormond Street
London WC1N 3JH
Tel: 020 7405 9200

Birmingham

Dr Anupam Chakrapani/Suresh Vijay – Clinical Lead/Dr Saikat Santra
Birmingham Children’s Hospital NHS Foundation Trust
Steelhouse Lane
Birmingham
B4 6NH
Tel: 0121 333 9907/8

Manchester

Dr Simon Jones
St Mary’s Hospital
Oxford Road
Manchester
M13 9WL
Tel: 0161 701 2137/2138
Fax: 0161 701 2303

ADULT

Manchester

Dr Reena Sharma; Dr Ana Jovanovic ; Dr Chris Hendriksz (from 1/3/2012)
Salford Royal Hospital NHS Foundation Trust
Department of Adult inherited Metabolic Diseases
Stott Lane
Salford
Greater Manchester
M6 8HD
Tel: 0161 2064365

Birmingham

Dr Tarek Hiwot/Dr Charlotte Dawson
University Hospital Birmingham NHS Foundation Trust
Queen Elizabeth Hospital
Queen Elizabeth Medical Centre
Birmingham
B15 2TH
Tel: 01223 274 634

Cambridge

Prof Tim Cox; Dr Patrick Deegan
Cambridge University Hospital NHS Foundation
Department of Medicine
Hills Road
Cambridge
CB2 0QQ
Tel: 01223 245151

London – National Hospital

Dr Robin Lachmann; Dr Elaine Murphy
National Hospital for Neurology & Neurosurgery
Charles Dent
Metabolic Unit
Queens Square
London
WC1N 3BG
Tel: 0207 829 8778

London – Royal Free Hospital

Prof Atul Mehta; Dr Derralynn Hughes
Royal Free Hampstead NHS Trust
Pond Street
London
NW3 2QG
Tel: 0207 7940500

Wales, Scotland and Northern Ireland have designated specialist hospitals for managing metabolic diseases but MPS patients do not have the benefits of the NCG model and access to treatment in the same way as England. This does mean some of our members in these countries are denied treatment or have suffered delays even when they meet the NCG treatment guidelines.

The designated specialist hospitals are:

  • Wales – University Hospital of Wales, Cardiff
  • Scotland – Yorkhill Children’s Hospital, Glasgow
  • Northern Ireland – City Hospital, Belfast