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 email@example.com.
To attend the adult clinics please contact:
Catherine Lewis on 07970 071 675 or email firstname.lastname@example.org.
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:
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