PKU Unplanned Pregnancy Emergency Advice

Follow these instructions as soon as you think there may be ANY chance of pregnancy. This advice aims to prevent damage to the brain and heart of the unborn baby if pregnancy is confirmed.

  1. Stop all foods containing protein
  2. Start amino acid supplement (either ready to drink or powders), e.g.
    Ready to drink: 3 x PKU Lophlex LQ20 OR 3 x PKU Cooler 20
    Powders: 3 x Lophlex Powder OR 150g XP Maxamum OR 3 x PKU Express 20
    OR 4 x PKU Express 15
  3. Phone your Metabolic Dietitian as soon as possible for further advice, or if you do not have one use one of the contacts below.

PKU Centres Treating Maternal PKU

These contacts are for emergency use only for those who have lost contact with their PKU centre and require urgent treatment for an unplanned PKU pregnancy.


University College London Hospitals (Adults)

Dr Robin Lachmann and Dr Elaine Murphy
Consultants in Inherited Metabolic Disease
Charles Dent Metabolic Unit
Box 92
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
Tel: 0203 448 4778

Fax: 0207 209 2146

Dietitians: Charlotte Ellerton & Harriet Churchill
Tel (direct): 020 3448 4332 / 0203 448 3604 / 0203 448 3605

Email: [email protected]


Salford, North West England

Reena Sharma, Dr Karolina Stepien, Dr Gisela Wilcox, Dr Ana Jovanovic Consultants in Metabolic Medicine
Mark Holland Metabolic Unit
Ladywell Building
Salford Royal NHS Foundation Trust
Stott Lane
Salford M6 8HD
Tel: 0161 206 4365
Email: [email protected]

Advanced Clinical Practitioner (Dietitian): Diane Green

Metabolic Dietitian: Alison Woodall


Cardiff, Wales

All Wales Inherited Metabolic Disorders (IMD) Service

Dr Duncan Cole, Lead Consultant for IMD
Dr Danja Schulenberg-Brand
University Hospital of Wales,
Cardiff

Tel: 029 2074 8359 or Tel: 029 2074 6588

Email: [email protected]

Dietitians for IMD
Kath Singleton & Sarah Bailey

University Hospital of Wales,
Cardiff

Tel: 029 2074 4294

Email: [email protected]


Dublin, Republic of Ireland

National Centre for Inherited Metabolic Disorders - Adult Service,

Mater Misericordiae University Hospital,
7 Eccles St,
Dublin,
Ireland,
D07 R2WY

Tel: 00353 1 8032759

Email: [email protected]

[email protected]

London (St Thomas’s)

Dr Yusof Rahman and Dr Radha Ramachandran
Consultants in Adult Inherited Metabolic Disease
St Thomas’s Hospital
Department of Inherited Metabolic Diseases
3rd Floor, Becket House
1 Lambeth Palace Road
London
SE1 7EU
Tel: 020 7188 4004

Adult Metabolic Dietitians: Sarah Firman & Jenni Cook
Tel (direct): 020 7188 9611
Email: [email protected]

Clinical Nurse Specialist Adult Inherited Metabolic Disease:
Tel: 020 7188 0850
Email: [email protected]


Birmingham

Dr Tarek Hiwot and Dr Charlotte Dawson
Consultants in Metabolic Disorders
University Hospitals Birmingham NHS Foundation Trust
IMD Offices Room 3-12
Heritage Building
Queen Elizabeth Hospital
BIRMINGHAM

B15 2TH
Tel: 0121 371 6987

Dietitians: Louise Robertson, Clare Dale and Sarah Howe,

Tel: 0121 371 6989

Email: [email protected]


Addenbrookes Hospital, Cambridge (Adult Metabolics)

Dr Patrick Deegan, Dr Chong Tan, Dr Paul Flynn,

Box 135
Cambridge University Hospitals
NHS Foundation Trust
Hills Road
Cambridge
CB2 0QQ

Tel: 01223 274634

Email: [email protected]

Metabolic Nurses: Julie Chapman, Liz Morris

Dietitians: Sarah Donald, Lisa Gaff, Catherine Flanagan

Tel: 01223 348769


Belfast, Northern Ireland

Consultants in Metabolic Medicine
Dr Clodagh Loughrey, Dr Grainne Connolly, Dr Kathryn Ryan

(all contactable via Secretary Michele Slane 028 9063 3556)

Royal Hospitals
Grosvenor Road
Belfast, BT12 6BA

Dietitians:

Nicola McStravick – 02890 633330 email: [email protected]

Joy McDonald – 02890 635465 email: [email protected]

joint team email [email protected]