Coronavirus: information and resources
We understand that people living with MPS, Fabry and related diseases are worried about coronavirus and how it might affect them so we have pulled together some sources of information and resources that you might find helpful.
Avoiding the virus
Public Health England have published some easy to understand guidance on protecting people most likely to get very poorly from coronavirus.
The World Health Organisation have a list of clear and basic protective measures you can take to protect yourseld against the new coronavirus.
Masks can help to reduce the spread of the virus as long as they are worn properly. This poster from NHS hospitals in Birmingham explains the benefits, best material to choose and how to make sure you are wearing your mask correctly and safely.
Mental health and wellbeing
Online coffee and share – if you, or someone you care for, is affected by rare disease, grab a coffee and join the team at Same But Different every Thursday at 10am for a digital chat.
First Aid for Worry is a sheet of ideas the clinical centres have put together to help you manage your worries at this troubling time when you may be feeling anxious. It gives useful ideas to try.
Charities offering support
For families with disabled children
Contact have some useful information and links for advice to help families with disabled children navigate through the confusion about the virus and its impact on them. They have collected it together in one place on their website to make it easy to find.
Support for sick children
Wellchild have a wealth of information and tips on their blog to help sick children during the coronavirus, including ten ways to keep my child with complex needs safe and seven rules for managing carers at home.
Great Ormond Street Hospital for Children
This information hub has brought together useful information from GOSH and their latest news in one place. It includes speciality information sheets from each of their departments as well as FAQs related to children and young people who are sick and their families.
Financial and employment
Turn2us is a national charity which aims to help people when times get tough. They provide financial support to help people get back on track. They are currently offering a coronavirus grant fund providing direct grants for people who have been affected by the coronavirus. These are in the form of a one-off crisis grant of £500 per household towards essential living expenses. Visit their site for more information about who is eligible to apply and what information they need.
HMRC have published guidance to help employees and businesses during the pandemic.
This video from Martin Lewis gives furlough advice and there is more information for seld-employed, businesses and employees and what they can do right now on the money saving expert website.
There is a lot of information out there and not all of it from trust worthy sources. These sites help to dispell some of the myths around coronavirus.
The American Society of Gene and Cell Therapy (ASGCT) have produced a short and easy to understand video explaining how mRNA vaccines for COVID-19 work. There is also a useful infographic and FAQs about the vaccine.
Whether you are on your own or looking after children, working or not, you need to stay busy to keep your sanity. Over the Wall, an amazing charity that offers empowering residential camps for children with serious illnesses has launched a programme of activities and challenges to be released three times a week on their Facebook, Twitter or Instagram pages. Look out for the challenges coming soon under the hashtags #MondayMayhem, #WellbeingWednesday and #FamilyFunFriday
The brilliant Axel Scheffler has produced a book about coronavirus just for children - and it's available as a FREE download. The Gruffalo illustrator worked with consultant Professor Graham Medley, two head teachers and a psychologist to make sure the book got the messages right, answering questions about quarantine, how you can catch the virus and what happens if you get ill. Publishers Nosy Crow have asked for donations in lieu of payment, to go to our fantastic health workers.
Explaining PPE to children
For children who are unsure about what PPE is or are scared of doctors and nurses who are wearing it, staff at Birmingham Women's and Children's Hospital have produced a video with the support of their Young Person's Advice Group that helps to explain all about it.
Back to school
Contact have a comprehensive webpage dedicated to advice for families with children with complex needs who are going back to school after lockdown.
Baker Ross. craft and toy store, is offering a series of free printables to keep everyone entertained.
Rapid support from Barnardos - See, Hear, Respond
The See, Hear, Respond Partnership is a new service funded by the Department for Education which aims to quickly identify and support children, young people and families who are struggling to cope with the impacts of coronavirus before these children reach the threshold for statutory intervention. It provides help through an online hub of support and information, online counselling and therapy, face-to-face support for those most affected and at risk of some of today’s most pertinent issues, and helping children and young people reintegrate back into school. If you are a child, young person, parent or carer there is a dedicated support page for you.
For young people
Here are some useful resources that might be helpful for our young people at this time.
CAMHS is a site created for young people, carers and professionals to pool together lots of helpful resources from across the internet that are available to help support your mental health and well-being.
Visit the site >>
Register online with Kooth to make an account and you will be able to receive online counselling, read articles, receive support and write daily journals.
Register with Kooth >>
The mental Health Foundation provides practical advice for looking after your mental health during the Coronavirus outbreak.
Visit the site >>
Anxiety UK have pulled together a range of information, resources and support for helping you understand how to deal with your anxiety during these difficult times while coronavirus is impacting on our lives.
Find out more >>
'NHS in Mind' is a free platform containing 8 easy-to-access, short interventions to help NHS staff alleviate and combat high anxiety, panic and fatigue at this time. These interventions may be useful to all.
Read more >>
Beat the isolation blues with this self isolation psychology wellbeing pack.
Download the pack >>
The National Youth Agency have produced a free workbook for young people aged 11-19 years old full of exercises,
quizzes and worksheets to help you stay well at home and cope with anxiety and stress.