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 the support and 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 telephone conference dial in for Wednesday 25th March at 4.00 pm. We are hoping that Tim and Tarek will join the call.

Please call in and share concerns or just listen to what others in the ASUK community are saying and doing. This is an opportunity for us all to offer some mutual support, particularly for those folks who are self-isolating.

You can either use your telephone or your computer to join the conversation.
We will try our best to answer any questions and concerns.

If you have any questions please send them prior to the webinar and by Midday on Tuesday 24th March at the latest. These questions can be sent to Catherine Lewis by email catherine.lewis@alstrom.org.uk or call 01803 368871

If there are lots of general medical questions we will follow up with the Clinicians and get back to you, as soon as is possible. We will all want to do our best to support the clinical teams who are working so hard in very difficult circumstances to support us all. Unfortunately, there are many unanswered questions about the virus, we can hopefully gather and share questions and answers – where there are answers.

We welcome your views on whether it would be helpful to have a weekly update and discussion group.

If you cannot join the call please do not hesitate to contact Catherine, Kerry, Carrol, Jane or Marie directly.

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


 Image result for save the dateWednesday 25th March at 4:00pm
The joining instructions for the Alström Syndrome UK virtual get-together are below:
Please join this virtual get-together from your computer, tablet or smartphone by clicking on this link https://www.gotomeet.me/AlstromSyndromeUK

You can also dial in using your phone, just dial the number below and enter the code when promoted:
United Kingdom: +44 330 221 0097
Access Code: 847-286-341

There are no charges for this call.

If you have any questions please send them prior to the webinar and by Midday on Tuesday 24th March at the latest.  These questions can be sent to Catherine Lewis by email catherine.lewis@alstrom.org.uk or call 01803 368871

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/