Research and inquiries – sharing your Covid experiences

Sense (part of the Complex Needs Consortium) has launched the #ForgottenFamilies campaign, highlighting the lack of support disabled adults and their families have been experiencing throughout the Coronavirus pandemic.

Families caring for disabled adults have been forgotten about and left to pick up the pieces, while much of the support they would usually access has stopped overnight, without warning.

  •  Sign their letter to the Secretary of State for Health and Social Care asking government to secure support for disabled people and their #ForgottenFamilies.


The House of Lords COVID Committee: Life Beyond COVID want to hear your views on the future of life after COVID-19 by 18 September. Find out how to get involved here.


Video and phone calls have been used more in court hearings during COVID-19. The Equality and Human Rights Commission wants to find out how this might have affected disabled people. You can read the first report from the inquiry here. 


CQC and Health Watch England have launched a campaign called Because We All Care.
They are asking for your help to identify quality issues so they can address them. Read more and share your feedback with them about your experiences of health and social care services during COVID-19 here.


Campaigners in West Sussex: People with direct experience or family members in West Sussex can join or share concerns with HACA (Harmed in Adult Care Alliance) to join a local campaign working for good care and transparency.


The University of Hull is doing some research called ‘Caring from a Distance – using new & familiar means of keeping in touch with family and friends in care homes during COVID-19′.
They are asking people to take part by filling in their survey here


The British Institute of Human Rights (BIHR)  is gathering evidence for two inquiries:

The Joint Committee on Human Rights (JCHR) inquiry into the (UK) Government’s response to COVID-19: human rights implications

And for those in Scotland, The Equalities and Human Rights Committee (EHRiC) at the Scottish Parliament inquiry into the impact of COVID-19 on Equalities and Human Rights.

They ask that you please complete their surveys below:

Survey to gather the experiences of those working in health and care during Covid-19. Click here.

Survey to gather the experiences of people accessing (or trying to access) health and care during Covid-19. Click here.

Survey to gather the experiences of campaigning and advocacy orgs, click here.


Are you affected by restrictions on family visits to loved ones who are autistic and/or have learning disabilities in inpatient mental health settings? Please share your experiences to help The #Right2Home Campaign press NHS England for change.


Shaping Our Lives has been given some money from the National Lottery Community Fund to do research. The research is to find out what longer term impacts on independent living have been caused for d/Deaf and Disabled people by Covid 19 emergency policies and lockdown.

You will not be asked to give your name and all answers will be kept anonymous.

You can find out more and complete the survey here. You can also call Becki on 07956 424511 and do the survey over the telephone or by Zoom.