NHS Clinics

NHS Clinics

NHS Alström Syndrome Multi-Disciplinary Clinics

In Partnership with the NHS, ASUK are now able to offer specialist medical clinics for people who are affected by Alström Syndrome. Please contact us if you would like to attend. 

To receive further information or to attend the Children’s clinic please contact:
Kerry Leeson-Beevers on 01709 210151 or email kerry.leeson@alstrom.org.uk.

To attend the adult clinics please contact:
Catherine Lewis on 07970 071 675 or email catherine.lewis@alstrom.org.uk.

We hope that families will be helped by attending one or two clinics per year. Extra Hospital visits can be arranged for specific problems or tests. The clinics include:

  • A carousel of tests and assessments – each person has their own timetable with appointments and tests ranging from cardiology, respiratory tests, diabetes and metabolism and pre-arranged appointments for audiology, psychology, urology and other tests which are deemed necessary
  • A summary of results and recommended therapy would be sent to each family, and their hospital and community carers.
  • A carefully planned set of tests and one blood sample taken at least once per year (providing patient and family are not too upset or young).
  • ASUK will be available throughout the clinics to offer support and information

Accommodation costs will be provided for by the NHS Trusts involved and ASUK can book this accommodation for you.

For information about the QE Hospital and contact details for clinicians click here: QE Information Leaflet

What happens at the Alstrom Syndrome Clinics?

If it is your first visit to the Alstrom clinics, we know how daunting this may feel or even if you are used to attending the clinic, sometimes it is nice to be reminded what some of the tests actually are such as the FibroScan and the Echocardiogram.

ASUK have brought together information which we thought would be useful to give you an overview of the clinics, the carousel of tests involved and the team who will support you along the way.

Click HERE to take a look.

Please feel free to get in touch with the team if you have any further questions, queries or concerns. Our contact details are on the team page, which can be viewed HERE

Please get in touch with Catherine Lewis by email on catherine.lewis@alstrom.org.uk if you would like a hard-copy sending in the post or if you would prefer the document in an alternative format.

Children’s Clinics

To be held at Birmingham Children’s Hospital

2020

  • 20th January 2020
  • 20th April 2020 – Telemedicine Clinic
  • 20th July 2020 – Telemedicine Clinic
  • 19th October 2020

Due to the coronavirus restrictions we are introducing telemedicine clinics, so we can still support families whilst they shield themselves. You can find out more about these telemedicine clinics HERE

Adult Clinics

To be held at the Queen Elizabeth Hospital, Birmingham

2020

  • 8th and 9th January 2020
  • 26th and 27th February 2020
  • 18th and 19th March 2020 (Transfer clinic) Telemedicine clinic with Prof. Tim Barrett
  • 15th and 16th April 2020 – rescheduled to 14th and 15th October 2020
  • 10th and 11th June 2020 – rescheduled to 11th and 12th November 2020
  • 14th and 15th October 2020
  • 11th and 12th November 2020

The outreach clinic in Leeds, is generally in November. The date will be released nearer the time.

Should dates need to be altered for any reason then everyone shall be informed as soon as possible.

Media Reviewed: April 2020
Next Review: April 2022

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