State of Caring Survey 2020

State of Caring survey 2020

The State of Caring Survey is the UK’s most comprehensive research into the lives and experience of carers. The 2020 survey is now open and will close on 17 May 2020.

Carers UK will publish the top-line results in its State of Caring Report in the summer.

Last year more than 8,000 current and former carers shared their experiences and helped inform the State of Caring 2019 report. Read more in the full report. 

Caring costs: Almost 2 in 5 carers (39%) responding to the survey said they are ‘struggling to make ends meet’. Over two thirds of carers (68%) reported regularly using their own income or savings to pay for care or support services, equipment or products for the person they care for.

Cuts to support: 1 in 8 (12%) of carers reported that they or those they support received less care or support services during the previous year due to a reduction in the amount of support from social services

Carers put themselves last: 53% of carers said that they are not able to save for their retirement, and almost two thirds of carers (64%) say that they have focussed on the care needs of the person they care for, and not on their own needs.

What Carers UK did with your evidence:

  • Your evidence of the impact of caring was at the heart of its manifesto for the 2019 General Election campaign, where they called for all political parties to increase support and recognition for carers. Nearly all political parties included reference to carers or caring in their manifestos.
  • Your responses enabled Carers UK to provide comprehensive evidence as part of its ongoing work with Sport England to investigate the barriers carers face in taking part in physical activity
  • Building on evidence from previous years, your experience of working while caring was included in Carers UK's response to the Government Good Work Plan consultation, making the case for employers to provide more support for carers. As a result, the Government has committed to consulting on the introduction of Care Leave for working carers. 

Carers UK appreciates the support of all carers who take the survey.


Clinical trial for autistic children with tummy problems 

Researchers at University College Hospital are seeking autistic children with tummy problems aged 3 – 16 to take part in a clinical trial of a probioticDoctor with a clipboard

It is hoped the probiotic will reduce gastrointestinal problems and also lead to greater benefits in mood and behaviour.

The trial is a double-blind placebo controlled crossover trial which means that every participant will get the active treatment for 12 weeks and also the placebo for 12 weeks with a four week break in the middle.

Each participant will be involved in the study for almost 7 months. It involves a couple of visits for the primary carer to University College Hospital which is near London Euston station over the course of seven months and one or two visits for the child. It may be necessary for participants to take time off school to attend the hospital visits. We are able to refund reasonable travel expenses.

There are no blood tests involved but parents will be asked to collect a stool sample from their child three times during the trial. Trial participants must not have taken probiotics or antibiotics for one month prior to enrolment to the study.

The probiotic being used for the trial is called Vivomixx. More information can be found at

Anyone who thinks this may be of benefit to their child and who are willing to answer a few questions to see if their child meets the eligibility criteria can email  with their name, phone number and some dates and times that it is convenient for her to call.