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.

Clinic Dates

Children’s Clinics

To be held at Birmingham Women and Children’s Hospital

2023

  • 30th January 2023
  • 8th March 2023 (virtual/telemedicine clinic)
  • 24th April 2023
  • 10th July 2023
  • 27th September 2023 (virtual/telemedicine clinic)
  • 9th October 2023

Adult Clinics

To be held at the Queen Elizabeth Hospital, Birmingham

2023

  • 18th and 19th January 2023
  • 15th and 16th March 2023
  • 17th and 18th May 2023
  • 14th and 15th June 2023
  • 20th and 21st September 2023
  • 15th and 16th November 2023
  • Outreach clinic in Leeds – November exact date TBC

 

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

Transition and Transfer

Alström Syndrome UK works in partnership with the NHS Trusts in Birmingham to ensure all families are supported. This includes throughout their time at clinic and in preparation for the transfer to adult services.

Our Transition Coordinator Marie, McGee works with youngsters who are transferring to adult services to ensure their voice is heard and their needs are met.

Please download the transition information sheet which gives further information HERE

Home Monitoring

Home monitoring

Due to the current pandemic, ASUK have worked with NHS Trusts in Birmingham to ensure the AS experts can still monitor the health of patients remotely. This has included telemedicine clinics where professionals from the AS multi-disciplinary clinics are on hand to answer any queries and monitor the patients health from afar.

In December 2020, patients were also sent home monitoring equipment such as digital body weighing scales, blood pressure monitor and tape measure so patients can keep track of their own health.

The packs contained all information needed including links to explain how to use the equipment. This information can also be downloaded below:

Health Monitoring Equipment Instructions download HERE

Your monitoring sheet, where you can add your information can be downloaded HERE

We also held a webinar with Bardet-Biedl Syndrome UK and Wolfram Syndrome UK families and professionals to demonstrate the equipment which is being distributed to children and young people.

You can view the presentation slides HERE

You can view the recording of this webinar below:

Tele-medicine clinics

Due to the current pandemic, ASUK have worked with NHS Trusts in Birmingham to ensure the AS experts can still monitor the health of patients remotely. This has included telemedicine clinics where professionals from the AS multi-disciplinary clinics are on hand to answer any queries and monitor the patients health from afar.

We have developed some information sheets to tell you a bit more about the telemedicine clinics. These can be downloaded below:

Information sheet for the adult telemedicine clinics can be viewed HERE

Information sheet for the children’s telemedicine clinics can be viewed HERE

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