Why respite is so important for unpaid carers and those they support

As part of Carer’s Week 2021, we look at what people have said about respite and the barriers that still exist.

Respite was a major topic for many people who took part in the ALLIANCE and Self Directed Support Scotland’s national research project about people’s experiences of Self-directed Support (SDS), ‘My Support My Choice’ (MSMC). Both unpaid carers and people who access social care highlighted respite as important in enabling a higher quality of life for them and for their families and friends.

People described respite as an essential way that they and their families benefit from having time and space to themselves, taking breaks, relaxing, and doing things that they enjoy. For example, one person explained that respite enabled long-distance visits to see relatives without needing to stay at their house, allowing the person to both see their family and have privacy and safe and appropriate support for their personal care needs.

Another person described their positive experience as follows:

“It’s been fantastic for us, with [Name’s] respite, because we started to use [venue]. […] We were just supposed to send [Name] for like Friday to Tuesday but they have [a camp] that runs for 10-11 days, and they have it for adults and they have it for children, so we have used that. […] [Name’s] away on holiday, rock-clambering, away having a great time. And myself and the other members of our family once went to [location] for four nights […]. That was amazing.”

Unfortunately, other people we heard from during MSMC talked about the problems they had with trying to access respite – even when it was included in their personal outcomes plan – and the subsequent difficulties that could cause. For example, one person told us that the problems they had resulted in serious consequences for their relationship with and trust in their social worker:

“The last [assessment] meeting I had, I left in tears as they threatened to cut my hours if I continued to ask about respite. It’s the first time I’ve ever felt ashamed, apologetic, a burden to have a disability. They hadn’t read my file so had no idea what [name of condition] was, made assumptions that I could do more for myself, and couldn’t understand why I needed someone with me when I go outside.”

Other MSMC research participants reported that some local authorities specified designated centres for respite provision – rather than allowing people to choose which arrangements suited them best – and refused to fund respite outwith those providers. This caused problems in terms of respecting people’s choices, but also meant longer waiting lists for spaces at those designated centres, particularly around typical holiday periods. People underlined their desire to be able to use their respite budget flexibly, as long as they could demonstrate activities met their personal outcomes and were within budget.

Another person’s story highlights the potential impact on respite caused by insufficient and inaccurate information about their budget, and delayed transfer of funds:

“We had an annual review last [month] and we received a letter to say that [Name] was getting the same budget, but that they would only send half the money and that the other half would come in [month]. Not a problem; I understand how budgets work and if that helps them manage their budget a bit better fine.”

The person went on to explain that, due to an oversight by the local authority, payment of the first half of the budget was delayed by four months, despite repeated emails. This caused the participant and the person they care for substantial stress and nearly resulted in the cancellation of much-needed respite.

We’ve made several recommendations in MSMC about a wide range of issues related to social care, including respite. We believe that flexible, regular access to respite should be strongly encouraged and supported, because it is an essential element of SDS that results in good personal outcomes for people who access social care, families and unpaid carers.

To find out more about My Support, My Choice and to read the reports, visit: https://www.alliance-scotland.org.uk/health-and-social-care-integration/self-directed-support/msmc/.

To find out more about Carers Week, visit: https://www.carersweek.org/ (this link will take you away from our website).

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