This page has been written especially for adolescents and young adults and their families to help them prepare for their move from the paediatric (children’s) services at Great Ormond Street Hospital to the adolescent and adult services at the Charles Dent Metabolic Unit.
We know that moving hospital can be a little daunting as there are a lot of new people to meet but we hope to make this process as smooth as possible.
Both metabolic services work closely together, and we meet once a week for a teaching and research meeting. We also share some of our laboratory testing facilities.
The Charles Dent Metabolic Unit is one of the largest and longest established services for adults with inherited metabolic diseases in the world. It was established at University College Hospital by Professor Charles Dent after the Second World War.
In 2000, the service was moved to its current location. Currently almost 2000 patients attend the Unit which is also an NHS England Highly Specialised Services centre for patients with lysosomal storage disorders.
This move may happen at different ages but generally between the age of 16 and 18 years. The paediatric team will discuss with you when would be the most appropriate time. Your paediatric team will refer you to the adult services and provide them with all your relevant medical data. If you have a brother or sister close in age to you attending the paediatric clinic we will try and transfer both of you together. Before you transfer to adult services the team from the Charles Dent Metabolic Unit will also come and meet with you at your last appointment in Great Ormond Street Hospital.
Adults (16 years and over) are seen in the Basil Samuel Outpatient Department at the National Hospital for Neurology and Neurosurgery (Queen Square).
Some patients (who are very stable on treatment) might also be able to be seen by video consultation for follow-up – to reduce the need to travel to hospital frequently. If this is something that you would like to arrange then ask us about this when you meet us in clinic for the first time.
We also support outreach services in Oxford, Northampton and Poole – so that if it would be more convenient for you to be seen there then please ask about this.
Dr Robin Lachmann, Dr Elaine Murphy and Dr Sam Shribman are the medical consultants. There is also a senior clinical fellow working in the unit. You will see one of these doctors when you come to clinic. The doctors provide a 24 hour, 365 days a year on-call emergency service by telephone and can be reached on 020 3448 4778 Monday to Friday from 9am to 5pm. Outside these hours other medical professionals can call the UCL Hospital switchboard (020 3456 7890) and ask for the adult inherited metabolic disease consultant on call for advice. Please make sure you keep these numbers in a handy place.
On occasion other doctors undergoing specialist training in inherited metabolic diseases may also attend the outpatient clinic. Other members of the team include clinical nurse specialists, research nurses, dietitians, a dietetic assistant, administrative staff, and a clinical psychologist.
The nurses are involved in the running of clinical trials, co-ordinating enzyme infusions, starch loads and other investigations in our day ward and attend the lysosomal storage disease clinic.
If you are on a prescribed metabolic diet one of the dietitians will see you at every clinic visit. The dietitians work very closely with women with phenylketonuria (PKU) and other metabolic conditions during pregnancy and keep in regular phone contact with all patients as needed.
Our dietetic assistant runs our metabolic kitchen and teaches patients how to measure protein exchanges and incorporate their daily protein allowance into a meal plan correctly and effectively. The dietetic assistant also arranges sampling of low protein dietary foods and supplements and cooking with these products.
The administrative staff are responsible for sending out all correspondence and arranging outpatient and inpatient appointments. If you need to change or cancel your appointment, please call or email them so that we can give your appointment to someone else.
The clinical psychologist performs neuropsychological (thinking skills) testing and full psychological assessments for patients. The psychologist can also advise on access to therapies if required. We also provide neuropsychological follow-up for all children born to mothers with inherited metabolic disorders, particularly PKU.
The Maggie Lilburn Metabolic Kitchen (located on the second floor of the Royal London Hospital for Integrated Medicine) is used to provide education for patients receiving specialist metabolic dietary therapy.
Either your current paediatric specialist or our doctors will refer you to the appropriate adult specialist as needed. We have strong links with physiotherapy, urology, ophthalmology, epilepsy, neurology, neurosurgical, orthopaedics, haematology and gastroenterology specialists at both the National Hospital for Neurology and Neurosurgery and the main UCL Hospital on Euston Road.
Some of the teams that we work most closely with include:
Cardiology
Professor Perry Elliott and team
The Bart’s Heart Centre, St Bartholomew’s Hospital
Neurosurgery
Mr Parag Sayal
National Hospital for Neurology and Neurosurgery
Gynaecology
Mr Vikram Talaulikar
University College London Hospital, Euston Road
Muscle
Professor Ros Quinlivan
National Hospital for Neurology and Neurosurgery
When you see us for the first time in clinic, if needed we will give you an up-to-date ‘emergency regimen’ or ‘sick day rules’ sheet. This will give you and your local GP/ hospital doctor instructions on what to do if you become unwell. For some disorders, copies of these emergency regimens are also available on www.
One of the metabolic doctors will always be available by telephone and can be contacted via the UCL Hospital switchboard outside office hours, call 020 3456 7890 and ask for the adult inherited metabolic disease consultant on-call. However, please be aware there is no Accident and Emergency department at the National Hospital for Neurology and Neurosurgery.
This will vary depending on medical needs, but in general most patients on a metabolic diet are seen every six months.
We have a specialist metabolic pharmacy, located on the ground floor of the hospital (Telephone 020 3448 3160). Specialist metabolic medications will either be prescribed from there or from the Lloyds Pharmacy at UCLH (Telephone 020 7388 2840).
To request a REPEAT PRESCRIPTION from the specialist metabolic pharmacy then please send an email to our repeat prescription mailbox:
uclh.
There is no need to copy the request to any other email addresses – this inbox is monitored regularly.
All requests should be made 4 weeks before medication runs out please. In the email please state your:
Full name
Date of birth
Hospital number (Medical record number, MRN) or NHS number
Name of the medication required
Current dose
By when the next supply is needed
Delivery address (if medication is to be posted)
Medications can be collected or will be posted via recorded Royal Mail delivery or courier. We kindly ask that patients reorder their prescriptions 4 weeks in advance but will need a minimum of 2 weeks to ensure that supplies arrive on time.
With each repeat prescription request please indicate if you want the supply posted and provide the delivery address. The medication will be sent recorded via Royal Mail or Courier requiring a signature on receipt.
In general adult patients will need to pay prescription charges – but some individuals are exempt, and others can reduce the cost by purchasing a prepayment certificate. Further information is available at https://
You can continue to receive infusions at home – our specialist nurses will co-ordinate this. You can even learn to give your infusion yourself if you wish.
Charles Dent Metabolic Unit
The National Hospital for Neurology and Neurosurgery
Internal Mailbox 92
Queen Square
London WC1N 3BG
Telephone: 020 3448 4778
Email: uclh.
Clinical nurse specialists:
Telephone: 020 3448 3272/3606
Email: uclh.
Dietitians and dietetic assistant:
Telephone: 020 3448 4332/3604/3605/3602
Email: uclh.
Clinical neuropsychologist:
Telephone: 020 3448 4778
Email: uclh.
Emergency on-call contact details for consultants (for medical professionals’ use):
Telephone: 020 3456 7890 (UCLH Hospital switchboard) and ask for the consultant on-call for inherited metabolic disease at Queen Square.
We know that being a young person with a health condition can affect many parts of your life.
This website has a range of advice and support for you: https://
NHNN also offers virtual peer groups for our young adult patients. If you are interested, please ask your clinician for the details at your appointment or email tara.
Metabolic Support UK (formerly Climb) – for all IMDs
Genetic alliance UK
The National Society for Phenylketonuria
Galactosemia Foundation
ALEX The Leukodystrophy Charity
Fabry Support and Information Group
Gauchers Association
Association for Glycogen Storage Disease
Society for Mucopolysaccharide Disorders
Niemann-Pick UK
The Lysosomal Storage Disorders (LSD) Patient Collaborative Group
Wilson’s Disease Support Group UK
When you attend the adult hospital for your first visit make sure you give your up-to-date contact details – including mobile number and email – to the adult team.
It is also a good idea to bring one box / bottle of each of your medications with you so that the correct doses can be confirmed on your adult medical record. Please include any over the counter vitamins or supplements that you take also.
Also ask about signing up for MyCare UCLH – an online portal where you can see your appointments, blood test results, clinic letters and other useful information.
Page last updated: 07 January 2025
Review due: 01 November 2027