Last week was Carers Week, and all over Twitter people’s feeds were filled with personal stories, news articles and commitments to do more to support the estimated, nearly 9 million unpaid carers that live in the United Kingdom; nearly 400,000 of those live in Wales.  There is a growing and a strengthening awareness that more needs to be done to support and value carers, and as over half of us will be a carer at some point in our lives, it’s an issue everyone should be concerned about.

Last year, MtM collected 183 stories from carers and 75% of those experiences were negative.  Many of the stories shared by carers echoed the themes of those shared by people in receipt of care and support: fighting for services, the challenge of working with multiple providers, and poor provision of information. 

Within the stories from carers, however, two critical themes emerged that draw attention to the need to understand more about what matters to carers, and more importantly, the need to do something about it.  Carers’ assessments and respite services are valuable opportunities for better supporting carers and the positive stories we received highlighted the impact they can both have when delivered well, but the positive stories were significantly outweighed by the negative ones.

More needs to be done to understand how these services can be improved, delivered more consistently and, in the case of respite, diversified to better meet the needs of carers and of people who need care and support.  In 2018, Carers Wales’ third briefing from Track the Act, stated that only 3.5% of carers had had a carers’ assessment.  Among the stories we heard were a number of examples of people being put off from having an assessment, and many more where carers who were in need of additional support were not being offered an assessment.

The stories of respite we heard illustrated the repercussions of being unable to access respite or of having no suitable options available.  They also highlighted the wider impact of this deficit in services, and the longer-term implications of things going wrong. 

‘Now that my daughter is an adult (by just a few years) the respite homes she can stay at are for 18 to 65 year olds.  They’re residential and can’t be group booked for younger people.   We decided to try using one and did extensive prep with the home, putting a thorough care plan in place.  When we arrived, they weren’t ready for her...[a traumatic night followed]…Now neither she, nor I, want her to go back there, but that also means there are no respite options’

Other stories described the lack of more spontaneous options that would enable carers to have an evening out, or to respond to emergencies elsewhere in their family; and others the lack of opportunities for the person they cared for to develop their own social networks.

From August, we will resume collecting stories and we want to hear more from carers, more about carers’ assessments, more about respite and more about the day-to-day realities of being a carer.  We want to understand the factors that contribute to good experiences of social care and those that contribute to negative experiences so that we can continue to make recommendations for service delivery improvements; and so that those that provide social care can identify what they’re doing well and what needs improvement.