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Check out Unique’s guide for families, containing lots of Covid-19 related information, guidance, ideas, resources and sources of help. Includes education, health, therapies, activities and much more. Click Here to read and download it (free of charge), then click Practical Guides for Families and scroll to Self-isolation guide to helpful resources.
The JCVI has advised that “persons aged 12–15 years with specific underlying health conditions that put them at risk of severe COVID-19 should be offered two doses of PfizerBNT162b2 vaccine with an interval of eight weeks between doses”.
GP practices will identify those children and young people who are eligible to receive the vaccine and will ensure that this group of patients is offered the opportunity to receive their COVID-19 vaccination as soon as possible to enable vaccination before school term starts in September.
The Joint Committee on Vaccination and Immunisation (JCVI) has advised the government that all adults on the GP Learning Disability Register be offered the vaccine as part of priority group 6.
If you support an adult who has a learning disability, or if you have a learning disability, and want the vaccine, urgently talk to your GP to make sure you are registered with a learning disability.
The JCVI have acknowledged that not everyone will be on the learning disability register, such as those in residential and nursing care, and those who required support, for example as part of assisted living in the community, and those in shared accommodation with multiple occupancy. The JCVI will work with local authorities to ensure all adults with a learning disability could be offered vaccination.
Joining the learning disability register enables you to receive extra support when visiting your doctor and may receive a free annual health check-up. More info is here: https://www.mencap.org.uk/advice-and-support/health/dont-miss-out
Unpaid carers are now being invited for their Covid vaccinations as part of priority group 6.
It is advised that parents request their GP to mark their records with a ‘carers flag’ to ensure they’re invited for the vaccination when their turn arrives.
Contact has produced a useful template letter to help parents complain if their GP tells them they are not a priority for the COVID-19 vaccine. You will find the template letter on Contact’s website: COVID vaccination: Your Questions Answered page.
Unpaid carers who get Carer’s Allowance are now able to book a Covid vaccine online in the NHS portal: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/ or by calling 119.
Further useful information can be found on the following pages:
Unpaid carers are now on the vaccination list (Group 6). It is advised that every parent carer should get in touch with their GP to ensure they are registered as their childs official carer. This will ensure you are included in the government’s priority group 6 (unpaid carers) and are offered the vaccine once it becomes available for that priority group.
Government guidance recommends that unpaid carers who get Carer’s Allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should be prioritised alongside people with underlying health conditions. See page 10 of the green book: bit.ly/3iGOgk9 and feel free to forward this on to your GP if they’re not aware of this guidance.
A Q&A about the Covid-19 vaccination is available from Contact: https://contact.org.uk/advice-and-support/covid-19/children-with-health-needs/covid-vaccination-your-questions-answered/
More information about the Covid-19 vaccination programme is available here: https://www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-30-december-2020/joint-committee-on-vaccination-and-immunisation-advice-on-priority-groups-for-covid-19-vaccination-30-december-2020#fn:3
Why you should register with your GP as a carer: https://www.carersuk.org/help-and-advice/health/looking-after-your-health/your-gp
Unique’s Carers Wellbeing guide: https://www.rarechromo.org/practical-guides-for-families/
New guidance is available for people living in England who were previously advised to shield.
Children who are clinically extremely vulnerable are advised not to attend school. Appropriate arrangements should be made for education to continue at home. Please click this link below to view the latest guidelines:
If you are unsure if your child is clinically extremely vulnerable, please discuss this with your GP or health professional.
A new patient interactive tool that allows people with rare diseases to better understand their risk of Covid19 has now been released.
It is the result of a collaboration between the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT company). The tool is based on advice from major specialist colleges in the UK and can be accessed here or you can copy and paste the link below:
The purpose of the tool is to open a conversation with the patient’s primary physician –it does not replace individualised advice. The rare disease risk tool should primarily be applied to ADULTS.
Children with rare diseases should follow the RCPCH guidance on shielding:
Information regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders are now available in video versions for people with visual impairment and people who prefer audio/visual information rather than text.
With thanks to the British Society of Genetic Medicine, the Clinical Genetics Society and the Association of Genetic Nurses and Counsellors for producing these videos.
Video 1: Covid-19 and Rare Disease: Overview
The information sheets regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders are now available in BSL (British Sign Language). With thanks to the British Society of Genetic Medicine. the Clinical Genetics Society and the Association of Genetic Nurses and Counsellors for producing these videos.
1st May 2020
Please click below for the shielding poster to print off & display on your front door to warn others that you and your family are shielding.
14th April 2020
Below you will find some new information sheets regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders.
These information sheets were kindly written and produced by Dr Elizabeth Forsythe, Dr Lara Menzies, Kelly Kohut, Dr Nicki Taverner, Professor Eamonn Sheridan and Dr Frances Elmslie, on behalf of the British Society for Genetic Medicine, the Clinical Genetics Society and the Association for Genetic Nurses and Counsellors.
Now, read on for some general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders:
We understand the Coronavirus (COVID-19) pandemic is very concerning for everyone but this may be especially so for families caring for individuals with developmental disorders, undiagnosed developmental delay, rare single-gene disorders and chromosomal disorders. Coronavirus can cause severe lower respiratory tract infection in some individuals especially the elderly and those with pre-existing disorders. In general, children appear to be more mildly affected than adults but anyone with a genetic disorder that compromises their swallowing or breathing or who suffers from frequent respiratory infections or has previously been hospitalised for respiratory problems may be at higher risk. There are as yet very few data about infection rate in children. Overall the death rate is much lower than in older people.
This is a rapidly changing situation with new guidance issued regularly as things evolve. Please check NHS guidelines available here: https://www.nhs.uk/conditions/coronavirus-covid-19/. If you are outside the UK, please check your country’s guidelines (e.g. for the US: https://www.cdc.gov/coronavirus/2019-ncov/).
Please see the WellChild website for a clear 10 point plan and information specifically for parents and carers of medically complex children: https://www.wellchild.org.uk/2020/03/18/ten-ways-to-keep-my-child-with- complex-health-needs-safe/. This includes a helpful link to a poster to put on your front door to advise visitors to your home of the precautions they need to take.
If, at any point, you think you or your child has developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice using the NHS 111 online coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to the internet, call NHS 111. Do this as soon as you get symptoms.
The situation is rapidly evolving but the evidence to date suggests that it would be sensible for all vulnerable individuals, especially those with pre-existing respiratory problems or any immune-compromise, to take additional precautions to limit their exposure (e.g. minimising contact with people outside their immediate family group). Please see this link for advice on social distancing and additional measures for those who may be at increased risk of severe illness from coronavirus (COVID-19). https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
Dr Helen Firth, Chair, Joint Committee on Genomics in Medicine
Dr Frances Elmslie, Chair, Clinical Genetics Society
Professor Eamonn Sheridan, Chair, British Society of Genetic Medicine