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

Types of Breaks

Consultation Paper Question 3

“We are looking for views on the draft lists we have created which identify some of the types of break options we want to clarify are acceptable. The first list covers breaks which may often be challenging for carers to access and the second list covers breaks which may sometimes be difficult depending on the availability of appropriate facilities.

• List one (carers are currently more likely to have difficulty accessing this type of break)
• List two (carers are currently less likely to have difficulty accessing this type of break where suitable facilities are available)

Do you agree that it would be helpful to specify some of the types of support or activities which provide a break from caring?

• Yes
• No

Please provide your reasons.”

We received 422 responses to this question.

There was clear support across all sectors for identifying appropriate types of short break support, with 8% of responses disagreeing. Conversations with engagement groups showed a similar view. Across all sectors, we also received a number of suggestions to enhance the benefits of providing a potential list.

The main reasons given for providing such lists were:

• Examples may help to encourage awareness of more flexible and creative break opportunities and challenge narrow views of what respite is.
• This approach could support more consistent national interpretation and application and limit circumstances where some types of breaks are refused at local level.
• Examples may support more person-centred conversations, enabling carers and professionals to collaborate more effectively to find appropriate support.
• Carers may feel more confident, informed and empowered to request support appropriate to their needs.
• This may strengthen creative use of Self-Directed Support (SDS) payments to better meet the intended outcomes.
• Individual responses highlighted that this may reduce the mental demand on carers to think of what types of breaks may support them when their primary focus is taken up by the caring role.

This last point was clearly demonstrated by the following comment we received from a third sector carer support organisation:

“Yes, possibly - carers may not always have the time or ability to identify what a break could look like for them, and a list of possible types of breaks could be helpful as a planning tool.”

The primary reasons for not providing such lists of types of breaks were:

• Lists may be understood as a complete list of options, limiting local availability and efforts to personalise short breaks.
• A universal list of services is unrealistic as availability of some types of support may be limited locally, leading to disappointment, frustration or reduction in trust in local services.
• A universal list may be unhelpful as carers’ needs are so diverse that it could not adequately include all appropriate types of breaks.
• A list could result in conversations focused on types of activity, rather than how those activities will benefit the carer.

A comment received from a statutory support organisation clearly captured some of these concerns and also suggested how it might be mitigated:

“This is helpful to an extent, but providing a list has the potential to stifle creativity and limit thinking and lead carers to think of this as a list from which to choose rather than being simply ideas. We should be able to say what is already in place but make clear there is scope to do something different.”

Both those who agreed and disagreed made suggestions to enhance the value of this approach, including:

• Providing examples, co-developed with carers, and not attempting to list everything available.
• Encouraging a person-centred decision-making process which focuses on each carer’s individual needs.
• Provision of national guidance, which includes examples and/or case studies.
• Emphasising the early intervention intention behind short breaks, to promote and enhance carer wellbeing, prevent burnout and to better preserve relationships including the caring one.
• Removal of the two-list structure to reduce potential confusion or disappointment as different types of breaks are available in different areas.
• Adopting an outcomes-based approach to discussion on what type of break is suitable for a carer’s circumstances and how the break will benefit them.
• Instead of lists of types of breaks, providing principles which support decision-making to allow for a broader definition of a break and for the discussion to focus on the outcomes a break should deliver for the carer.

Consultation Paper Question 4a

“Are there any types of breaks you think are missing from this list?

• List one: (Carers are more likely to have difficulty accessing this type of break)”

We received 275 responses to this question.

Within these responses, just over a quarter of respondents (27%) indicated that they had no suggested amendments to the draft list or were content with the proposals, while 10 were unsure. 140 out of 275 replies (51%) suggested types of breaks, including additions or amendments. However, a number of those suggestions focused on strengthening the usage of the lists or practical applications of the list rather than adding types of breaks. As this is outside the scope of the question, it is not included below.

A high number of responses, including feedback received during engagement sessions, repeated breaks already included on either list one or list two, particularly replacement care for the cared-for person; support for practical tasks; group activities (favoured by young carers especially); and local breaks. As these were already listed, they are again not included in this summary. A variety of other breaks were suggested across the three groups, with the most frequently mentioned additional break types as follows:

• Digital inclusion support including technological equipment and access (for example, laptops or tablets)
• Emergency or crisis-focused breaks (often required at short notice)
• Wellbeing or therapeutic breaks (such as mindfulness or wellness opportunities, use of spa facilities or personal care sessions like massage)
• Breaks which include supported transport
• Hobbies, sport or creative activities
• Longer holiday opportunities, including trips at some distance from home (including overseas)
• Micro-breaks
• Accessible and person-centred breaks targeted at specific demographics of carers and cared-for people including: children and young people, older people, Black and minority ethnic people, disabled people and neurodivergent or autistic people.

A third sector respondent shared this feedback from one of their supported parent carers, who highlighted why they were supportive of the list including targeted support for those who might otherwise find it challenging to access breaks:

“…it's a good list and I like that they've separated out the young carers aspect of it because I do think that that is such an important area that the young carers have specifically catered for. I also thought it was quite nice that they took into account like culturally diverse, kind of like religious things as well…”

Consultation Paper Question 4b

“Are there any types of breaks listed which you think should not be included?

• List one: (Carers are more likely to have difficulty accessing this type of break)”

We received 212 responses to this question.

The majority of responses supported the proposed types of breaks and had no specific recommendations for changes. Less than one quarter of responses (roughly 23%) recommended any particular break be removed. Many of these recommendations were repeated only once or twice, meaning each suggested change had very limited support.

While this table counts all replies to this question, some respondents may have misunderstood what was asked, as some of the types of breaks they suggested being removed from the proposed list had not appeared there.

The types of breaks which respondents suggested should be removed from this list varied across demographics, as noted below:

• Statutory sector
  • One-off family breaks following transition periods or significant change
  • Giving carers more time for themselves by providing support with regular tasks (e.g. housework, gardening etc.)
• Third sector
  • Giving carers more time for themselves by providing support with regular tasks (e.g. housework, gardening etc.)
  • One-off family breaks linked to transition periods/significant change
  • Culturally appropriate / culturally diverse breaks
• Individuals
  • Giving carers more time for themselves by providing support with regular tasks (e.g. housework, gardening etc.)
  • Culturally appropriate / culturally diverse breaks;

Responses appeared to misunderstand the proposal “Giving carers more time for themselves by providing support with regular tasks (e.g. housework, gardening etc.)” as concerns were raised that housework was not a meaningful break. The intention behind this option is that support to relieve the carer of these tasks could enable them to spend their time in a way which was meaningful to them.

Additionally, third sector and individual respondents flagged concerns around culturally diverse breaks as they felt that this should be embedded across all types of breaks rather than having its own category.

While no specific break types were identified during the direct engagement sessions across this question or 5b, some carers raised concerns that very short breaks may not provide adequate support. In addition, some groups expressed concerns that breaks to support them may be challenging to implement due to budget and staffing issues. These groups were Black and minority ethnic carers, rural and island carers and, in relation to overnight stays, young carers.

Consultation Paper Question 5a

“Are there any types of breaks you think are missing from this list?

• List two: (Carers are less likely to have difficulty accessing this type of break)”

We received 205 responses to this question.

57% of respondents were content with the proposed types of breaks in list 2, while 28% suggested amendments to the list.

As before, many of the types of breaks suggested were already included in draft lists and so are not repeated here. A further high number of recommendations were already included for list one. Below we have included any further types of breaks which respondents felt should be considered:

• Hyper-local and community-based activities
• Out-of-school provision for disabled children or those with additional support needs, or for parent carers of children who cannot attend school full-time
• Hospitality-based breaks
• Educational or skills-based activities
• Religious or spiritual activities or support to attend services
• Respite or overnight facilities where the carer and cared-for person can stay together with replacement care

In addition to this, a number of responses focused on support to achieve the break which they felt ought to be included as part of the wider support package, such as:

• Transport to break venues
• Trial breaks or taster sessions for different break types or locations
• Enhanced or urgent support at challenging times, including following illness, transition, relocation or Armed Forces deployments
• Focused support aimed at easing the burden of planning care for specific groups who may face additional challenges in accessing breaks, such as parent carers, those with dementia, cared-for people with complex support needs, larger families etc.
• Carer-outcome focused support

Consultation Paper Question 5b

“Are there any types of breaks listed which you think should not be included?

• List two: (Carers are less likely to have difficulty accessing this type of break)”

We received 180 responses to this question.

As with question 4b, the majority of responses were supportive of the list of break types as drafted, with nearly three quarters of replies (74%) suggesting they would not remove anything from the list. 16% of responses thought that some types of breaks should be removed, with frequent overlap in those suggested. Some of those responses suggested certain break types be removed because of concerns that there would be insufficient funding or that these breaks were not likely to be available in their area, rather than a view that they should not be permitted. We have included these suggestions below but have not included breaks which did not appear on the original list:

• Longer-term holiday breaks
• Breaks and activities which only offer partial respite, such as breaks without replacement care or breaks with the cared-for person
• Building-based day care/day services for the cared-for person

• Subscription-based or item-based grants to enable the carer to try new activities/undertake hobbies etc

Consultation Paper Question 6

“Do you have any concerns that providing a detailed list would have any unintended consequences?

• Yes
• No”

We received 421 responses to this question.

The responses to this question were fairly even, with a slight majority highlighting that they were not concerned about the prospect of providing a list of some acceptable break types.

By sector, roughly 60% of individuals, 18% of statutory and 22% of third sector organisations had no issues with the provision of a list, indicating notably more concern from statutory and third sector organisations.

The main concerns about this approach are covered in responses to question 3.

Consultation Paper Question 7

“We are also considering specifying a list of circumstances that should not be viewed as short break support for a carer, such as:

• The carer going to work
• The carer attending medical appointments
• The cared for person attending education.

Would it be valuable to specify a list of circumstances (as above) that should not be viewed as a break from caring?

• Yes
• No”

We received 418 responses to this question.

The responses to this question were clearly in favour of providing a list of circumstances which should not constitute a short break, across all three sectors.

Consultation Paper Question 8a

“List of circumstances (as question 7) that should not be viewed as a break from caring: Are there any circumstances you think are missing from this list?”

We received 236 responses to this question.

It is clear from some of the responses that there was misunderstanding about the question, which was intended to identify circumstances where the carer and cared-for person were apart, which should not be viewed as short break support for the carer. A number of responses identified short break activities; current barriers to support; repeating the circumstances already listed; and things which already constitute support available to carers. It appeared that some respondents had incorrectly understood that this was intended as a list of activities that carers should not be supported to participate in. Those suggestions are not listed here.

However, a large number of respondents provided detailed responses to this question, which are summarised below:

• Hospital admission or medical/dental appointments for the cared-for person or the carer, including therapy or physio sessions
• Education for the carer, if they wished to pursue learning opportunities separate to their caring role
• Young carers attending education
• Education for the cared-for person might provide a genuine break for some carers
• Circumstances where the carer maintains responsibility for planning or remains “on standby” to provide support
• Taking on an additional caring role
• Religious services or events
• Bereavement related activity
• Weddings
• The administrative tasks associated with caring, including household chores, preparing for a short break or support service, attending assessments or legal appointments
• Managing a crisis or family emergency
• Attending unpaid carer-related support services
• Taking reasonable time for sleeping or other essential forms of rest
• Travel to and from any of the above

In addition to providing similar feedback to many of the suggestions above, we heard during our co-design engagement sessions that some carers felt more detail should be given around carers’ employment to also include seasonal work, volunteering, jobhunting and vocational training.

A key theme of responses was that, while it was useful to have a list of circumstances which generally should not be thought of as a break, final decisions should be taken in conjunction with the carer as sometimes these situations might provide genuine opportunities for the carer to have meaningful time to themselves.

One Health and Social Care Partnership clearly captured this overall theme with the following response:

“No additional circumstances are proposed for inclusion… Expanding the list risks increasing complexity and creating further potential for misunderstanding… A concise and clearly explained list, supported by strong guidance, is therefore preferable. This should emphasise that everyday activities do not replace the need for meaningful breaks from caring, while ensuring that professional judgement and individual context remain central to decision making…”

Consultation Paper Question 8b

“List of circumstances (as above) that should not be viewed as a break from caring: Are there any circumstances listed which you think should not be included?”

We received 156 responses to this question.

The majority of responses did not feel that the proposed list needed to be changed, with about two thirds (97 responses) indicating they were content with it.

However similar to 8a, a number of responses indicated misunderstanding of the question, which asked whether any of the three circumstances proposed as not being considered as a break should be removed from that list. Some replies, not summarised below, identified circumstances outside of the three proposed.

Feedback received on the three situations listed is as follows:

• Similar to feedback on 8a, some felt that this list should be indicative only and the decision taken in discussion with carers. It could be agreed that some opportunities currently included on the list may be mutually agreed as a break, depending on the carers needs and preferences and should not be excluded unnecessarily.
• Work may be considered a break as it allows carers to realise their own ambitions, develop skills and enjoy social interaction.
• If education is included in the list, this could be limited so that if a carer wants to attend for leisure – such as taking a course on a hobby, this should be considered a break.
• Others disagreed with the above points and felt that employment and education should never be considered a short break for carers.
• Some felt that inclusion of “the cared-for person attending education” was dependent on how the carer used this time as, for some, this could represent a break.
• It was also suggested that these circumstances should be considered as a “minimum” and that it should be possible to add to this based on experience once the right is in place.
• Concern was also expressed that by providing a list of excluded activities, local authorities may interpret that as not having to provide support to enable it.

In summary, there was broad support for the inclusion of a list of circumstances which did not constitute a break and that the three activities proposed were largely supported. However, feedback suggests that this should remain open to interpretation, in conversation with carers, to ensure it best meets the needs of individuals.