Unpaid carers - right to breaks and timescales for support plans: consultation analysis

Definition of “Sufficient breaks”

Consultation Paper Question 1

“We proposed the following definition of “sufficient breaks”:

“Sufficient breaks” means “breaks from caring which enable a carer to have enough rest, leisure and time to:

a. avoid negative impacts from their caring role on their health and wellbeing; relationships with others; and life balance; and

b. help them to achieve their personal outcomes in these same areas”.

Is this definition clear enough to make decisions about a carer’s eligibility for a break from caring?

• Yes
• No
• Not sure

If you answered “no”, how could it be made clearer?”

We received 424 responses to the question.

While the majority of responses from individuals felt the proposed definition was clear enough for making decisions about a carer’s eligibility, the majority of statutory and non-statutory organisations did not. One individual told us some of the reasons they supported the definition:

“The proposed definition is a strong and welcome starting point. It appropriately recognises that breaks are not simply about respite from tasks, but about sustaining carers’ health, wellbeing, relationships and wider life balance. The emphasis on personal outcomes is particularly positive and reflects the principles of personalised, preventative support…”

Of those who felt the proposed definition was not clear enough, the most common reasons were as follows:

• Responses from all sectors highlighted concerns about some words being imprecise and open to interpretation, particularly “enough” and “sufficient”.
• The risk of inconsistent interpretation was also a concern across all sectors.
• Statutory and third sector responses highlighted the absence of a clear framework or criteria to support decision making.
• Some individuals and third sector responses criticised the definition as using too much jargon and called for more plain language.
• Another common criticism across all sectors was that the definition alone would not be able to account for the variation and complexity across caring roles.
• Several statutory responses identified “avoiding negative impacts” from most caring roles as unachievable in practice.

The main suggestions made for improvements were:

• Greater clarity and precision of terminology (noted above) to aid decision-making and plainer English for ease of understanding.
• Clear guidance for practitioners covering:
  • roles and responsibilities
  • how to interpret terms in the definition

  • how decisions should be reached, e.g., decision-making criteria such as measurable indicators

  • case studies or examples

  • how decisions should be recorded.

• A more person-centred, outcomes-focused approach, to better reflect the complexity of caring (e.g. reference to intensity, duration and unpredictability of the caring role, carer’s circumstances, etc).

• Covering expectations for what counts as a break; the frequency and duration of breaks; and the need for replacement care for the cared-for person.

The above suggestions are similar to feedback from carer engagement events. While each discussion group noted positive things about the definition, participants expressed concerns that they were unclear about the criteria and responsibility for decision-making and the impact of those decisions on carers. These groups also called for greater emphasis on a person-centred approach.

Consultation Paper Question 2

“Does this definition cover the appropriate aspects of the caring role to help make this decision?

• Yes

• No

If you answered “no”, what aspects of the caring role should the definition cover?”

We received 420 responses to this question.

While more than two-thirds of individuals agreed that the draft definition covers the appropriate aspects of the caring role, the majority of statutory and third sector respondents disagreed. Roughly 66% of organisational responses suggested improvements to the definition to better reflect the caring role and its impacts.

Those who felt that the scope of the definition should be changed made various recommendations including:

• adding detail on the nature of the caring role, such as complexity of tasks, unpredictability, multiple caring roles or hours spent caring.

• mentioning other areas of carer’s life, rather than capturing it under the broader term of “life balance”, e.g. income, education and employment.

• greater acknowledgement of the emotional and mental demands of caring was needed.

• emphasising the cumulative impact of long-term caring roles on carer wellbeing.

• expanding “health and wellbeing” to include physical and mental health and emotional and psychological wellbeing.

• young carers at engagement events wanted to see the definition cover a wider variety of areas, to help ensure decisions consider how far-reaching the impacts of caring could be.

For example, one third sector organisation shared the following concern:

“…members felt that the definition misses many aspects of a carer’s life that can impact their caring role. For example, the definition does not reflect the all-encompassing nature of complex care, with carers often unable to take a break due to their caring responsibilities....”

Another third sector organisation was more comfortable with the draft definition:

“… The three domains (health and wellbeing, relationships with others, and life balance) are appropriate and reflect the evidence on carer outcomes. The definition as worded allows practitioners to consider the cumulative and relational impact of caring, not only its physical demands ...”