Economic & Social Barriers to Inclusion: Reports and Research
Charities, government bodies, social scientists and ethicists research and report on many topics, including the social and institutional barriers faced by people with disabilities.
Living with a Rare Condition: The Effect on Mental Health (published May 2018)
As part of Mental Health Awareness Week 2019, Rare Disease UK published their report from 2018 looking into the mental health impact of living with a rare disease.
Neuro Numbers 2019 (published March 2019)
This Neurological Alliance report highlights that the number of neurological cases, (which include SMA) has now reached at least 14.7 million in England – that’s more than one in six people living with one or more neurological conditions. The alliance is using this new data to call for greater prioritisation of neurology by the health and care system to ensure the needs of this growing patient group are met.
UK National Screening Committee report on screening for SMA (published February 2019)
The report did not recommend screening for SMA.
APPG for Muscular Dystrophy: Access to psychological support for people with neuromuscular conditions (published November 2018)
This report found that immediate action is required to improve access to appropriate psychological support for people with neuromuscular conditions, as well as their families.
‘Off Balance – Parents of disabled children and paid work’ - report by Working Families (published July 2018)
This report highlights how parents of disabled children are struggling to hold down vital jobs, even when they downshift and stall career progress, because of a dearth of suitable and affordable childcare, flexible jobs and appropriate leave.
The Disabled Children’s Partnership’s (DCP) survey of children’s services report (published June 2018)
Over 1,500 surveys about the quality of health and social care services were completed by families.
The UK Rare Diseases Strategy Second Progress Report 2016 – 2018 (published February 2018)
You can also read Genetic Alliance’s comments, here.
The Views of Families - The Imagining Futures Research (Published April 2017)
Dr. Felicity Boardman’s research project was designed to address this gap in understanding and explore, in detail, the views of families living directly with SMA towards the possibility of population level genetic screening.