Northern Ireland Rare Disease Partnership

Getting through the huge amount of information currently being shared around the world about Covid-19 can be intimidating, scary and confusing as well as anxiety-inducing. To try and create a little order we’ve put together some useful websites and free resources. Please by aware that there is a lot of non-factual information being circulated and go to official sites for updates.



GOVERNMENT INFORMATION


Please visit the Public Health Agency website to find our accurate, reliable information or to be kept up to date with recent developments www.publichealth.hscni.net/news/covid-19-coronavirus




or UK government advice can be found here: www.gov.uk/coronavirus




The Department of Health has also launch a Covid-19 app – further information is available here –


www.health-ni.gov.uk/news/dedicated-northern-ireland-covid-19-app-launched


To download the app – search for Covid-19 NI on the Apple app store or on google play.




SPECIFIC CONDITION SUPPORT


More specific condition advice may be available via the wide range of voluntary organisations that exist across the UK.  A number of them are listed on the groups and organisations page here:  www.nirdp.org.uk/about/rare-disease-groups-and-organisations/


The British Society for Genetic Medicine has also put this info together:  www.bsgm.org.uk/news/general-advice-for-patients-with-rare-or-undiagnosed-genetic-disorders-re-covid-19/




HEALTH AND WELL-BEING


Living with Worry and Anxiety – as we all isolate, use a video link if you can to stay in contact with family and friends or at the very least pick up the phone.


The Psychology Tools guide to might be a very useful tool at this time  www.psychologytools.com/assets/covid-19/guide_to_living_with_worry_and_anxiety_amidst_global_uncertainty_en-gb.pdf






Telephone Support Schemes – If you live by yourself, please remember there are a number of telephone schemes such as the Good Morning programmes which exist in nearly every neighbourhood and these wonderful projects will try to keep running during this very uncertain time.  You can find your nearest scheme here: www.northerntrust.hscni.net/services/good-morning-services/


Support – Patient Client Council – For general support or advice, contact the Patient Client Council on T: 0800 917 0222 (9am -5pm Mon – Fri) or E: info.pcc@pcc-ni.net


Food – Have your shopping delivered – plan ahead as all the big suppliers have 2/3 weeks waiting time for delivery slots.  In addition, lots of local convenience shops are posting on Facebook pages to support those most vulnerable.  So check the local support website, telephone support schemes or Facebook for local support!   Communities are really coming together to provide support to individuals and it truly is an amazing thing to see!




And finally…FREE RESOURCES


There are a wide range of resources being made available, some specifically for children.


Chatterpack – Claire Ryan has put together an amazing list of resources on the Chatterpack site.  She is one of the amazing #NHSHeros and runs the site in her free time. Topics include virtual tours, geography and nature, arts and culture, music, mental health and loneliness to name but a few.  www.chatterpack.net/blogs/blog/list-of-online-resources-for-anyone-who-is-isolated-at-home?fbclid=IwAR25gUYexnAxbyuqVZrcvlAINXZQLU44c48UpSGaNVkVHeWVZn_TvG97FaY


PE with Joe Wicks   Joe Wicks,The Body Coach, has invited kids across the nation inside his home for his daily PE lessons.  Not a kid, you can still join in!   www.youtube.com/playlist?list=PLyCLoPd4VxBvQafyve889qVcPxYEjdSTl


Libraries NI Ebook Service – Existing members just need their membership number. New members can sign up here  www.bit.ly/LNIebooks-emags


#OperationStorytime – A number of authors are also reading their books online – look up #OperationStorytime on Instagram!  And some artists are even running drawing lessons – www.bookriot.com/2020/03/16/kidlit-authors-stepping-up-during-the-covid-19-crisis-and-quarantine/


The Family Fun NI page on facebook is also listing a number of free online classes and resources to help keep children and adults alike engaged.  Find them on facebook @familyfunni


There are many sites that give you more ideas about things to do but here’s 100 to get you started! www.eu.usatoday.com/story/life/health-wellness/2020/03/16/coronavirus-quarantine-100-things-do-while-trapped-inside/5054632002/


 


 


 










STRONGER TOGETHER


We work together to ensure that no one in Northern Ireland is disadvantaged because of the rarity of their condition.








TAKING ACTION


We work to enable people who live or work with rare or hard to diagnose conditions to connect, advocate, educate and innovate in partnership with each other.








A VISION FOR CHANGE


We work to create and accelerate positive change by working in partnership with families, patients, carers, researchers, health care professionals, the local health departments and member charities.