Consultation on timescales for adult carer support plans and young carer statements for carers of terminally ill persons

Questions

We invite your views to each of the questions below.

The Carers (Scotland) Act 2016 - Proposed Terminal Illness Regulations

1. Overall outcome and principles for regulations

Background

Sections 7 and 13 of the Carers (Scotland) Act 2016 are as follows:

7 Adult carers of terminally ill cared-for persons

(1) The Scottish Ministers must by regulations prescribe timescales for the preparation of adult carer support plans in relation to adult carers of terminally ill cared-for persons.

(2) For the purposes of this section and section 13, a cared-for person is terminally ill at any time if at that time the person suffers from a progressive disease and death in consequence of that disease can reasonably be expected within 6 months.

13 Young carers of terminally ill cared-for persons

The Scottish Ministers must by regulations prescribe timescales for the preparation of young carer statements in relation to young carers of terminally ill cared-for persons.

For the purpose of these regulations, the Act defines terminal illness as where, "the person suffers from a progressive disease and death in consequence of that disease can reasonably be expected within 6 months"^[4].

The Act gives all carers the right to an adult carer support plan or a young carer statement (as appropriate). The requirements for adult carer support plans and young carer statements are set out in the Act and associated statutory guidance^[5].

Local authorities are responsible for offering and preparing adult carer support plans and are normally responsible for young carer statements. Many authorities have made arrangements for local carer organisations to prepare these plans or statements on their behalf. The adult carer support plan or young carer statement will explain the carer's personal outcomes and identify any support required to achieve these outcomes.

Our existing statutory guidance on adult carer support plans and young carer statements explains that they "ought to be prepared within reasonable timescales taking into account the urgency of needs for support". Because of the particular urgency of supporting carers looking after someone who is terminally ill, the legislation quoted above requires time limits to be set for preparing plans for them.

As explained above, we expect many carers of people who are terminally ill to have had an ACSP or YCS well before the 6-month definition is reached. We know that authorities already prioritise ACSPs and YCSs for these carers, so we expect the time limits to be set will act as a backstop rather than a target.

In deciding on the content of these regulations, it is helpful to consider the overall outcome and principles which they should support.

Proposal 1

We are proposing the following overall outcome for the regulations to support:

• Adult carers and young carers of a terminally ill person receive an ACSP or YCS and associated support in an efficient and timely manner.

We also propose the following principles to be taken into account in developing these regulations:

• The time limits we set should not compromise the quality and personalisation of support for carers of people with a terminal illness.
• The time limits we set for this group of carers should take into account the impact this may have on prioritisation of other urgent cases.
• The time limits we set should not prevent adult carer support plans and young carer statements being completed quicker, in line with existing good practice.
• We should minimise bureaucracy for both professionals and carers.

Question 1

1) Do you agree with the overall outcome and principles proposed?

Yes / No

Please explain your answer.

2. What triggers the time limits set by these regulations (i.e. when does the clock start)?

Background

Local authorities (and Health and Social Care Partnerships) may identify a carer of a terminally ill person in a number of ways.

• A carer may inform the local authority of their situation.
• A local authority may receive information or a referral from a professional such as a home care assistant, district nurse, health visitor or GP.
• A local authority may receive a referral as part of preparation for hospital discharge of the cared-for person.

To 'start the clock' on the time limits, the regulations could require particular types of evidence, such as a DS1500 form^[6], to confirm the terminal illness diagnosis of the cared-for person. However, we are concerned that such an approach would lead to delays and create unnecessary additional work for the professionals involved and for carer.

Proposal 2a

Instead, to avoid potential delays, we are proposing that the time limits should be triggered, when the authority receives information to indicate that a carer is caring for a person with a terminal illness. This could encompass any of the situations listed above.

As part of this approach, we will develop guidance for authorities to accompany the legislation on approaches to identifying carers in this situation and evidence they might draw on (in line with the 6-month definition noted above)^[7].

Further background

When the authority receives information about a carer in this situation, he or she may not be ready to participate in an adult carer support plan or young carer statement. Immediately following the diagnosis of a terminal illness, it is understandable that carers are often unwilling to focus on their own needs until the support needs of the cared-for person have been addressed.

The regulations will need to take account of these situations and ensure that these carers can benefit from the accelerated time limits for ACSPs and YCSs when they are ready to participate.

Proposal 2b

We therefore propose that the time limits would also be triggered, when a carer who is caring for a person with a terminal illness requests an adult carer support plan or young carer statement.

Question 2

2a) Do you agree with the proposal that the time limits in regulations would be triggered, when the authority receives information to indicate that a carer is caring for a person with a terminal illness?

Yes / No

Please give reasons for your answer

2b) Do you agree with the proposal that the time limits in regulations would also be triggered, when a carer who is caring for a person with a terminal illness requests an adult carer support plan or young carer statement?

Yes / No

Please give reasons for your answer

3. Separate timescale for first substantive conversation with the carer in preparation of an ACSP or YCS

Background

An adult carer support plan or young carer statement can be completed following one conversation or may need several, depending on individual needs and the complexity of the case. It may also require the input of different organisations, particularly in deciding about support to meet a carer's identified needs, which can include support for the cared-for person. These circumstances can mean that more time is required for an effective ACSP or YCS to be completed.

Many of the benefits of an ACSP or YCS would normally emerge from the first substantive conversation with the carer. This would normally involve developing an understanding of the outcomes that are important to the carer and their individual needs; and ensuring the carer is aware of sources of support and advice and their options for future care planning.

We want the timescales we set to ensure this first stage happens quickly to help ensure effective and timely intervention, in line with the overall outcome we are proposing for these regulations. We also want timescales which take account of the complexity in some cases, and do not compromise the quality of the ACSP or YCS.

Proposal 3

We therefore propose to set two separate time limits:

• a shorter time limit for the first substantive conversation with the carer in preparing the ACSP or YCS; and
• a longer time limit for the completion of the ACSP or YCS.

Question 3

3) Do you agree with the proposal to set separate time limits for the first substantive conversation with a carer (as part of the preparation of their ACSP or YCS) and for completion of the ACSP or YCS?

Yes / No

Please give reasons for your answer

4. Timescale for the first substantive conversation in preparation of an ACSP or YCS

Background

We want carers of terminally ill people to receive timely support, but the timescales we set also need to take account of carers' individual circumstances and their readiness to participate. Immediately following the diagnosis of a terminal illness, carers may be unwilling to focus on their own needs until the support needs of the cared-for person have been addressed. At this very early stage, the carers' needs may also be hard to identify.

In setting these time limits, we need to bear in mind:

• our proposed overall outcome that these carers receive timely support;
• the principle of not compromising the quality of support for carers; and
• the principle of taking account of the impact on prioritisation of other urgent cases.

Rather than proposing a specific time limit at this stage, we are seeking views on three alternative timescales. These have been informed through dialogue with Local Authorities and Health and Social Care Partnerships regarding their current practice and timescales for prioritising similar cases.

It is important to note that any timescale prescribed would need to be subject to the carer's willingness to participate.

QUESTION 4a

4a) Adult carer support plans - Please give your views on the pros and cons of requiring the first substantive conversation for the ACSP to take place within the following alternative timescales.

Time limit	Pros and cons
2 days
4 days
6 days
Other (please specify)

What is your preferred time limit? Please give your reasons.

Additional background – Young carers

All the issues discussed above are relevant to setting a time limit for the first substantive conversation in preparing a young carer statement.

Additionally, young carers of people with a terminal illness can be particularly vulnerable due to their age and pressures of balancing their caring role and education.

We are therefore requesting separate views on the pros and cons of alternative time limits for the first substantive conversation in preparing a young carer statement.

Question 4b

4b) Young carer statements - Please give your views on the pros and cons of requiring the first substantive conversation for the YCS to take place within the following alternative timescales.

Time limit	Pros and cons
2 days
4 days
6 days
Other (please specify)

What is your preferred time limit? Please give your reasons.

As highlighted previously, once a carer has been identified by a local authority they may not be ready to participate in the ACSP/YCS. In such cases local authorities would agree future actions with the carer, this may be to delay the first substantive conversation and agree a further date, or, agree for the carer to contact the local authority once they wish to take the offer of an ACSP/YCS forward.

In such cases, timescales for completing the first substantive conversation and the ACSP/YCS would start once the carer had confirmed they were ready to participate.

Counting non-working days?

Background

In setting a time limit of a few days for the first substantive conversation with the carer, we will need to decide whether public holidays and weekends will be counted. There is certainly the potential for the authority to receive information during weekends or public holidays to indicate that a carer is caring for a person with a terminal illness.

This decision needs to consider our proposed overall outcome that these carers receive timely support; as well as the practicality for authorities in mobilising support on non-working days. We also need to bear in mind our principles of:

• not compromising the quality of support for carers; and
• taking account of the impact on prioritisation of other urgent cases.

Question 5

5) Please give your views on the pros and cons of whether the first substantive conversation time limits should count non-working days or working days only.

Days	Pros and cons
Include non-working days
Count working days only (excluding week ends and public holidays)

What is your preferred option? Please give your reasons.

Timescale for completing the adult carer support plan or young carer statement

Background

In addition to setting a time limit for the first substantive conversation, we also propose to set a time limit for the completion of the ACSP or YCS for carers looking after someone who is terminally ill.

Completing the ACSP or YCS means that the carer has all their needs identified and decisions about support made and recorded, regardless of how complex their circumstances are. The time limit we set should support the proposed overall outcome that these carers receive timely support. These will be time limits, so will not prevent the ACSP or YCS being completed more quickly, in line with existing good practice. We will also need to take account of the potential for some caring situations to require support from different agencies and organisations, which could take time to coordinate and deliver. We also need to bear in mind our principles of:

• not compromising the quality of support for carers; and
• taking account of the impact on prioritisation of other urgent cases.

Again, rather than proposing a specific time limit at this stage, we are seeking views on three alternative options. These have been informed through dialogue with Local Authorities and Health and Social Care Partnerships regarding their current practice and timescales for prioritising similar cases.

The legislation will also need to take account of the fact that in some cases authorities will be reliant on other organisations inputting before they can complete an ACSP or YCS. This will mean including a caveat that authorities must take reasonable and practical measures to complete plans/statements in the prescribed timescales. This caveat will be expanded in guidance to accompany the regulations.

Question 6

6a) Adult carer support plans - Please give your views on the pros and cons of requiring the ACSP to be completed within the following alternative timescales.

Time limit	Pros and cons
2 weeks
3 weeks
4 weeks
Other (please specify)

What is your preferred time limit? Please give your reasons.

Additional background – young carers

All the issues discussed above are relevant to setting a time limit for completing a young carer statement.

Additionally, young carers of people with a terminal illness can be particularly vulnerable due to their age and pressures of balancing their caring role and education.

We are therefore requesting separate views on the pros and cons of alternative time limits for the completion of a young carer statement.

6b) Young carer statements - Please give your views on the pros and cons of requiring the YCS to be completed within the following alternative timescales.

Time limit	Pros and cons
2 weeks
3 weeks
4 weeks
Other (please specify)

What is your preferred time limit? Please give your reasons.