If you need a large print, audio, braille, easy-read, age-friendly or translated copy of this page, email the patient information team at uclh.patientinformation@nhs.net. We will do our best to meet your needs.

Moving your care to an adult hospital can be a very unsettling time not only for you, but for your family as a whole.

Hopefully this page will answer some of the questions you may have and will provide some helpful information and contacts to ensure as smooth a transition as possible.

In healthcare, we use the word ‘transition’ to describe the process of moving on from children’s health care to adult health care.

Transition is a gradual process, and you and your family will be involved in the planning and preparation for this move.

The exact timing for transition from children’s to adolescent services varies from person to person, but the majority of young people move when they are aged between 16 and 18 years.

After your appointment in the joint adolescent clinic you will be sent a letter of invitation to attend the young person’s neuromuscular Clinic at Queen Square.

It is very important that you telephone within the specified time to arrange this first appointment, as failing to do so may result in your referral being cancelled.

For this first appointment only, you will also need to arrange transport via your GP if required.

Your doctor at Great Ormond Street will arrange for the relevant information from your medical history and investigation results to be made available to your new team at Queen Square for this appointment. Your new doctor will spend some time getting to know you, and may ask you many questions you have been asked before. If you need any tests or investigations to be performed following this appointment, the location of these will be explained to you.

The main difference you may notice at this clinic is that you will be encouraged to be more involved in your care and make decisions for yourself.

Although you, rather than your parents, will be asked to make decisions, you can still ask for their advice and they can still attend appointments with you if you wish.

Anything you discuss with any member of the team - doctor, nurse or receptionist will stay confidential. Nothing will be shared with anyone - including parents, other family members or care workers without your permission.

  • Your appointment letter
  • Your current contact and GP details  
  • Mobility aid(s)
  • A list of all medication you are taking
  • Any relevant letters from other doctors
  • Contact details for any other health or social care professionals involved in your care
  • You may find it helpful to write down any questions you have before attending the clinic

How frequently you are seen by your new doctor will be discussed with you at each clinic appointment, based on your individual needs at the time. You will be notified of subsequent appointments via letter. If you have any concerns between appointments, contact details are provided at the end of this page.

Neuromuscular conditions often require support and advice from a number of different members of the health care team. For this reason, it may be helpful sometimes to arrange admission to the Neuromuscular Complex Care Centre (NMCCC).

Navigating a new hospital, with appointments and investigations in multiple locations can be a tiring and stressful experience. The first of its kind in the country, the NMCCC is not an acute facility, but a relaxed environment where investigations and monitoring can be undertaken in the one place for people with neuromuscular conditions.

Unlike an acute ward, a family member or carer is also welcome to stay with you overnight. The ward is equipped with games and an area to chat with other young people. Following your first appointment at the young person’s clinic, your doctor may ask if you would like to visit the centre and meet the team of nurses, therapists and doctors.

Centre for Neuromuscular Diseases
National Hospital for Neurology and Neurosurgery
8-11 Queen Square
London WC1N 3BG

Switchboard: 0845 155 5000
Extension: 88132
Direct line: 020 3448 8132
Fax: 020 3448 3633
Email: uclh.neuromusculartransition@nhs.net 

Great Ormond Street Hospital: Muscle Service
Switchboard: 020 7405 9200
Extension: 0517/1195
Fax: 020 7829 7923
Email: muscle.service@gosh.nhs.uk
Website: www.gosh.nhs.uk

Services

Printing of this document is only valid on the day printed, please refer to the website for most up to date information:

https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/young-persons-neuromuscular-clinic

Service information

Page last updated: 29 May 2024

Review due: 31 March 2025