We are here for you

We are here for you

Date: 20 Mar, 2020  No Comments

The Corona Virus epidemic and how we can support you and your family.
I’m sure you, like us all, are anxious for yourself and your family at this unprecedented time. I wanted to share with you what we are doing and what we can do to support you and your family through these worrying and unknown times.

Our focus remains, to support the wellbeing of all patients and their loved ones as well as the well-being of our staff team. As many of you know the ASUK team are a virtual team and all work from home. This means that the Family Support Service will continue, but unless urgent, we will be carrying out most of our ‘family check ins and updates’ by telephone rather than visiting you in your home. This measure will help reduce person to person contact and follow the government guidance on social distancing.

As always you can contact your Family Support Worker by telephone, or FaceTime or by webinar link. Let your Family Support Worker know which method works best for you.

Update on Clinics
We will keep you updated on any decisions made to reschedule clinics and support you with any arrangements for accommodation and/or travel when and where necessary. We will contact you by email, letter or telephone, whichever is best for you, as soon as we know.

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We are organising a variety of webinars so you can dial in by telephone or your computer to join together and chat with the Alstrom community. We will update the website and social media channels with more information about each session.

Social Media

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We will continue to publish information on the website and through social media.
I want to reassure you that we will keep updating the ASUK Facebook pages with the evidence based information from trusted sources.

Finally, I want to thank you for your patience, understanding and offers of help during this worrying time. There has never been a more important time for us all to come together and help each other.

We look forward to speaking with you next week.

Best Wishes

Ann and the team
Ann Chivers, Chief Executive


 Guidance from our Clinicians

Our AS clinicians have kindly brought together some specific information for people affected by Alstrom Syndrome. This is to read in conjunction with the Public Health England, NHS and Government general guidance below.

You can view guidance from our AS specialists HERE

General Guidance

This is the advice from NHS England and the links to the latest information about corona virus.
Everyone is being reminded to follow Public Health England advice to:

  • Always carry tissues with you and use them to catch your cough or sneeze. Bin the tissue and wash your hands or use a sanitiser gel.

  • Wash your hands often with soap and water, especially after using public transport.

  • Use a sanitiser gel if soap and water are not available.

  • Avoid touching your eyes, nose and mouth with unwashed hands.

  • Avoid close contact with people who are unwell.

Stay at home to stop coronavirus spreading

Everyone must stay at home to help stop the spread of coronavirus.

This includes people of all ages – even if you do not have any symptoms or other health conditions.

You can only leave your home:

  • to shop for basic essentials – only when you really need to

  • to do one form of exercise a day – such as a run, walk or cycle, alone or with other people you live with

  • for any medical need – for example, to visit a pharmacy or deliver essential supplies to a vulnerable person

  • to travel to and from work – but only where this is absolutely necessary

Find the latest information about shielding and protecting yourself in the link below:

You can click on the link to find Public Health England’s advice for protecting those in vulnerable groups, such as Rare Diseases https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

You can find information and advice from Public Health England at https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

You can find out more about the Government’s response on their website www.gov.uk/coronavirus

NHS Guidance can be found by following the link to the NHS website  https://www.nhs.uk/conditions/coronavirus-covid-19/