Latest News: Information
SMA UK Joins Other Groups Advocating for Early Access to COVID-19 Vaccines for our Communities
23 November 2020 / Posted in: Information, Support
Though, clearly, frontline staff, those in care homes and those who are older need priority access, we are very concerned that many clinically vulnerable children and adults and their families / carers / personal assistants, don’t feature as priority groups under the current early access proposals. We've written to The Joint Committee on Vaccination and Immunisation.
Accessible Housing Crisis
18 November 2020 / Posted in: Information, Support
The Housing Made for Everyone (HoME) coalition is calling on the government for urgent action to tackle the UK’s accessible housing crisis by raising the mandatory building standards. Individuals and organisations can have their say by responding to the consultation, via an online survey, before the deadline of 1st December.
How is Covid 19 Affecting SMA UK Now?
18 November 2020 / Posted in: Information, Support
An update on where SMA UK is at the moment in terms of staffing and our services, and changes we've made, as well as a thank you to the Community for all your continued support.
DBC Petition: 'Don’t Leave Disabled People Behind’
17 November 2020 / Posted in: Information, Support
More than 119,000 people have signed a petition calling for the two million disabled people, lone parents and families who receive legacy benefits, to stop being denied the £20 a week uplift that millions on Universal Credit were given at the start of the pandemic. It was handed to the Chancellor today, ahead of the spending review.
Free Advice on Legal Challenges to Health and Welfare Disputes
16 November 2020 / Posted in: Information, Support
Genetic Alliance UK are hosting this session with Kirsty Stuart from Irwin Mitchell Solicitors who will be offering free, practical advice and answering any questions. Taking place Tuesday 24th Nov at 10am.
New Survey: Stakeholder and Public Involvement at the UK NSC
16 November 2020 / Posted in: Information, Support
Public Health England would like to find out your views on how the UK National Screening Committee involves stakeholders (people and organisations with a professional or particular personal interest in screening) and the public in its work. Closes 13th December.
Out of the Shadows - Report by The Neurological Alliance
12 November 2020 / Posted in: Information, Treatments & Research, Support
This new report, launched today, is calling for better treatment and care for the 150,000 children and adults living with a rare neurological condition, including SMA, in England.
Big Social Care Survey 2020
10 November 2020 / Posted in: Information, Support
The Care and Support Alliance are running this survey to find out what it is has been like needing care, in England, during the pandemic. It should take around 15 minutes to complete.
I:DNA Immersive Art Installation
02 November 2020 / Posted in: Information, Treatments & Research, Support
Prof Felicity Boardman has done extensive research on the social and ethical implications of genomic medicine from the perspectives of people with genetic conditions. I:DNA is a virtual, immersive art installation which is an artistic representation of all this research. You can ask questions ahead of a live Q&A on 11th November.
Beacon: How Continuing Healthcare Will Resume Post-COVID 19
29 October 2020 / Posted in: Information, Support
In August 2020, new government guidance set out how NHS Continuing Healthcare (CHC) would be reintroduced in England from 1st September 2020, along with a new Hospital Discharge Policy. Beacon have provided further information around this.
