Edinburgh Integration
Joint Board

National Theme 3 – Health & Social Care Support

National Strategic Outcomes:

• People who provide unpaid care are supported to look after their own health and wellbeing, including to reduce any negative impact of their caring role on the own health and wellbeing. (National Health and Wellbeing outcome 6.

Organisational Outcomes

• Carers are supported to look after their own physical, mental, emotional and social wellbeing.
• Carers are supported to have a life outside and/or alongside their caring role.

Personal Outcomes

• Carers feel listened to and heard as individuals.
• Carers feel well supported throughout their caring journey.
• Carers feel safe, rested and recharged.
• Carers feel that they have choice and control over their services and supports.
• Carers feel supported to maintain their caring relationships and sustain their caring role.
• Carers build relationships with and gain peer support from other carers and families.
• Carers access the right supports at the right time, including taking breaks from their caring role.
• Carers report improved physical and mental wellbeing.
• Carers report improved social participation and wellbeing.

This refreshed carer strategy is primarily intended to take the requirements stipulated in The Act and to translate these into local plans of action. In Edinburgh, this strategy should also be used to inform how other public services are planned for and delivered, thus taking a more holistic view around carer support. This will be important in areas of strategic and operational development currently underway in Edinburgh, emerging from inspection improvement and development plans, service reviews, and strategic capacity and demand work, ensuring carer support is embedded in the fabric of the city. The National Carer Strategy helpfully indicates synergy with various parallel National Strategies and associated actions, which will also encourage a carer focus across all these associated areas, including:

For people with learning disabilities or autism, mental ill-health, drug and addiction issues, sensory impairment or who are older and have dementia, their unpaid carer is never usually far behind. However, until the Carers (Scotland) Act (2016) was introduced, many carers struggled on doing the best they could, unaware of the importance of their work, or of the support that was available, with little or no breaks, or the sense of having a life of their own. As highlighted in this strategy, such situations would often leave the carer in desperate situations with their mental health impacted, employment or training opportunities out of reach, relationships strained, with them often feeling burnt out and unable to cope.

Across Scotland approximately 1 in 5 of the population have a caring role whose dedication and hard work is reported to save local authorities in the region of c.£10.8bn per year⁴³Improved support or Scotland’s unpaid carers – gov.scot (www.gov.scot). Unpaid Carers therefore play a significant role not only in the support of people with health and social care needs, but in preventing or delaying the need for costly packages of care to be introduced.

Demands and pressures on our Health and Social Care system are projected to increase significantly in coming years⁴⁴https://www.gov.scot/publications/independent-review-adult-social-care-scotland/pages/2/, and the impact in Edinburgh has been highlighted through the Edinburgh Integration Joint Board. Against a backdrop of an ageing population and challenging financial circumstances, directing the right support to carers at the right time will be critical in preventing carers and families from reaching crisis point. This will also ensure the health and social care system continues to deliver support to those with the highest need for it. The need therefore to establish what support a carer needs, if they are to feel able and willing to continue in their caring role, is an imperative now and for the future. The benefits associated with sustaining unpaid carers in their caring roles, including having a life alongside caring, is indicated below:

1. Sustain carer in caring role including by having a life alongside caring

2. Reduce strain and stress on carer

3. Reduce likelihood of carer health problems and breakdown

4(a). Better outcomes for carer(s)

4(b). Better outcomes for cared for person(s)

5. Reduce costs to NHS of meeting health needs

6. Reduce cost to local authorities of replacing care by carer with paid care.

3.1 The Carer (Scotland) Act 2016 – “The Act”

“The Act⁴⁵Carers (Scotland) Act 2016 (legislation.gov.uk)  aims to ensure carers have choice and control and can access preventative support to protect their wellbeing and keep caring situations manageable. It puts in place a system of carers’ rights designed to listen to carers; expand and transform carer support; and prevent problems – helping sustain caring relationships and protect carers’ health and wellbeing”. – National Carer Strategy

A central tenet of The Act, through the Carers Charter⁴⁶Carers’ charter: Your rights as an adult carer or young carer in Scotland (www.gov.scot) was the introduction of the carer’s right to an Adult Carer Support Plan (ACSP) or, in the case of Young Carers, a Young Carer Statement (YCS) (appendices 4-10). These key plans, designed to be preventative in nature and implemented at a local level, are used to capture what is important to carers, such as feeling more skilled in their caring role, or having a life outside of their caring role. The conversations that flow from these provide an opportunity for the carer to explain how their situation affects them; to be supported to identify their personal outcomes, and to feel supported towards these as they continue in their caring role. The Act also stipulates that these plans must help a carer to consider:

• the nature and extent of the care they provide and, the impact on their wellbeing and day-to-day life.
• the extent to which they are able and willing to provide care.
• emergency and future care planning.

Another key part of the ACSP/ YCS process is for carers to receive the right support to meet their eligible needs (Appendices 6 & 10). This duty under The Act directs Local Integration Authorities to consider as part of the process, whether that support should include a short break or break from caring ensuring this is reflected within the Plan.

The development of Local Carer Strategies was also highlighted as a duty for Local Integration Authorities across Scotland. Edinburgh launched their 3-year Joint Carer Strategy in mid-2019. The developments, initiatives and collaborations flowing from this shall continue
to be built upon and improved through this refreshed version.

Accompanying the Act at the point of its production, was the National Plan⁴⁷Carers+Act+Post-Implementation+Plan+-+Final.pdf (www.gov.scot). This covers six key priorities and includes:

1. Strategy and leadership
2. Legislation and guidance
3. Workforce and systems support and development
4. Raising awareness
5. Carer involvement and choice
6. Measuring progress and impact.

Since the Act was introduced in 2018, the Local Integration Authorities across Scotland, and in Edinburgh, have worked to take forward these developments. It is critical in these early stages, and in a post-pandemic era, to consider just how effective these strategies are, and how well carers are supported as a result of them.

Short breaks and breaks from caring

We know that access to personalised, flexible short breaks can make a real difference for carers to recharge their batteries – helping sustain caring relationships and enabling carers to have more of a life of their own. We also know that to be worthwhile, breaks need to be a positive experience for both the carer and cared for person. – National Strategy

Short Breaks and Breaks from Caring are an integral part of this strategy refresh to ensure that we meet the key guidance within the Carers Act (Scotland)⁴⁸https://www.gov.scot/publications/carers-scotland-act-2016-statutory-guidance-updated-july-2021/ , the National Carers Strategy and most importantly the needs of local carers in Edinburgh in relation to getting a break from caring.

As indicated in the COVID-19 section above, it is acknowledged that carers have been significantly affected by reduced access to short breaks and breaks form caring, with key shorter and longer term impacts being articulated.

It is acknowledged that the term ‘Respite’ is often used to describe a break from something which is unpleasant. Most carers and partners therefore feel that the term ‘respite’ is negative and is often associated with institutional services or emergency situations. ‘Short Breaks’ is a more positive, broader and inclusive term and captures the flexibility and creativity that carers have told us matters to them and will replace the term ‘respite.’ Short breaks and breaks from caring also supports the promoting variety⁴⁹Promoting variety | Shared Care Scotland  approach being adopted across Scotland.

Edinburgh Voluntary Organisations’ Council (EVOC), carried out a review of support with travel and respite for adults with disabilities or additional support needs and those that care for them, published in December 2021⁵⁰https://www.evoc.org.uk/wordpress/wp-content/media/2021/12/Getting-About-Getting-A-Break-Phase-1-DEC-2021.pdf.

Two surveys were carried out:

a. People caring for and/or using day support services for people with additional support needs – 101 responses, of which 38 respondents cared for people who received a short break/respite service.

b. Organisations providing day support for people with additional support needs – 10 organisations responded, of these 5 provided support to unpaid carers.

Initial conclusions from these include:

• The number of people accessing day support five days per week has dropped by just over 50% since the start of the pandemic.
• There has been a significant increase in the number of people providing their own transport to day support or respite services, compared to a significant decrease in people travelling by minibus or sharing transport – both of which were of course not possible in many cases due to COVID-19 safety issues.
• The way in which decisions regarding service changes were communicated was variable, as was the pattern of negotiating to resume services i.e., in many cases this required an assessment for a service that had been provided prior to the pandemic.
• While 40% of respondents reported no change to respite arrangements, 23% said the service had been reduced, and 28% said it had not been available at all since the pandemic.

This highlights some of the key areas for ongoing development in the provision of short breaks and breaks from caring.

By taking a preventative and innovative approach we will develop a Short Breaks Implementation Plan, incorporating key aspects associated with the EHSCP Supporting Adult Carers and Caring Relationships Policy. This policy was developed with partners and carers, ensuring the key purpose of a ‘break from caring/short break’ continues to be to support carers to have a life outside of, and/or alongside of their caring role. The key foci should continue to be helping to support unpaid carer health and wellbeing, sustain their ability to continue in their caring role as long as they are willing and able to do so, and support breaks planned around what is important in their life and improve their personal outcomes.

We will undertake to extend, and update any new statutory requirements associated with the Edinburgh Short Break Services Statement 2019, the purpose of which is, and will continue to be, to provide information to carers and cared for people so that they:

• Know they can have a break in a range of ways
• Are informed about short breaks that are available
• Have choice in the support they access, and are able to optimise self-directed support options
• Can identify what a short break means for them, and how they can be supported to meet their needs and achieve their personal outcomes and more.

The range of ways (not exhaustive), in which a carer can have a short break may

• Take place during the day, evening or overnight
• Be for short or extended periods
• Involve the person with support needs having a break away from home allowing the carer time for themselves in their own home
• Enable the carer to have a break away from caring, and the home if needed, by temporarily providing replacement care, or other support as indicated
• Allow the carer and the cared for person/family to have breaks together
• Enable the carer to have a break from caring with a group of their peers
• Provide a range of supported and bespoke break options for groups of carers with or without their cared for person

The Short Breaks Implementation Plan will seek to build caring relationships, and collaborations between partners to promote and expand a variety of short breaks and breaks from caring and optimise availability across partner agencies. The plan will also recognise that carers may often require a significant level of support prior to, during and post the short break.

Work through the current contracts and early learning from the Promoting Variety work within Edinburgh, has identified joint working partnerships, development of bespoke break options for carers and expansion of offers that include the carer and the cared for person sharing breaks, safely, securely and in a supported manner. Short breaks are not one size fits all, and we will aim to have a portfolio of offers and approaches and will seek to develop these over the life of this strategy.

Edinburgh carers who are in the most complex and challenging caring roles may experience significant gaps in break options or replacement care for their cared for person. This can result in these carers not being able to access the expanded service offers and provision in the city for themselves because they cannot safely leave the cared for person unattended.

Befriending Services and Sitter Services that can cater for people with high level care needs would be valued, particularly to support the unpaid carer to get a break. Carers also tell us that overnight services that can cater for people with high level care needs in their own home to enable the carer to get a break away from the home environment is not available or affordable.

Opportunities will be identified for services to be developed to provide high quality short breaks to meet carers strategic and personal outcomes. Options around Short Breaks Brokerage will be explored and developed, supporting carers to have an outcomes focused plan, increased knowledge and support to access more short break opportunities and to therefore have a more balanced life alongside or outside of their caring role.

3.3 Self directed support

“Self-directed support is Scotland’s approach to social care support. It allows people and their carers to make informed choices on what their support looks like and how it is delivered. Greater control of their life and decision-making leads to better health and wellbeing for carers and supported people.” (National Strategy ref)

Carers involvement in decision-making affecting the support for the supported person. Such involvement creates the sense of control over their particular situation and encourages a sense of wellbeing for both parties.

The Social Care (Self-directed Support) (Scotland) Act 2013⁵¹Social Care (Self-directed Support) (Scotland) Act 2013: statutory guidance – gov.scot (www.gov.scot)  requires local authorities to offer people who are eligible for social care a range of choices over how they receive their support. The option of how the supported person’s funded support should be arranged, will therefore be
discussed with both the carer (of any age or background), and the supported person in a way they can understand, through the involved professional Social Worker or Occupational Therapist. Information on the 4 SDS options will be presented and collectively, a decision on
the best route shall be reached. The options are:

• Option 1: A Direct Payment (DP), which gives you the most choice and control over your care and support.
• Option 2: An Individual Service Fund (ISF) where a service, registered as an ISF provider, manages a Direct Payment on your behalf
• Option 3: A direct service where your care and support are fully arranged by the involved Social Worker or Occupational Therapist
• Option 4: Simply a combination of any of the three options above.

By being involved in these decisions, the carer can ensure the support can fit around their caring role more easily and lead to them finding a better balance around their work, relationships, and personal life. However, SDS has not been implemented as fully and widely as was the expectation. For this reason, work at a National Level has been completed, resulting in SDS Framework of Standards⁵²https://www.gov.scot/publications/self-directed-support-framework-standards-including-practice-statements-core-components designed with Carers and supported people’s outcomes at the centre ensuring the key aspects of the SDS Act are fully implemented. It was recognised that much positive work has been done however there is still more to be done.

The Self-directed Support (SDS) Improvement Plan 2023-2027 was therefore developed and published in June 2023 and aims to take a whole system approach to the improvement of SDS, recognising that delivery partners across statutory, third and independent sectors all play an essential role in SDS improvement. The SDS Improvement Plan 2023 – 2027 sets out the priorities to drive forward improvement in Self-directed Support over the next few years. The plan recognizes that Self-directed Support should be the way that social care support is delivered for adults, children and young people, families and carers.

3.4 National care service

At time of writing this strategic refresh the consultation and engagement process on the establishment of a National Care Service (NCS) in Scotland is still underway. The proposals for the National Care Service put human rights and needs front and foremost, using a preventative approach to alleviate and improve the identified needs, placing them at the heart of the solution for the individual.

This approach has been built into the Edinburgh Joint Carers Strategy Refresh and we will ensure that our strategic refresh and future strategies align with the proposed National Care Service Bill and legislation as it progresses.

National Care Service: How Edinburgh will contribute to the outcomes

3.5 Carers, Hospitals & Healthcare

As detailed and described in a number of sections within this strategy the motivation is to link to the current Proposed Actions within the Draft National Strategy, particularly around Preparedness for future scenarios, the role of GP Practices and Care Navigation Role, Primary Healthcare Teams and Hospital Discharge procedures. This will involve working with partners in healthcare to support and develop practical solutions to the identified issues and impacts for carers. Such as:

• Identification of carers
• Connecting carers to opportunities and support
• Social prescribing
  Healthcare-located carer support, such as, contact with outreach workers, welfare and benefits, counselling, and emotional support.
• Working alongside the Discharge Without Delay programme. This programme is being piloted in Edinburgh from 2022, to support speedy discharge from hospital for those patients who no longer have a clinical requirement to be there. This model will depend on unpaid carers to be partners at every stage to ensure success. The Hospital Discharge Carer Support Team (HDCST) are already involved in this multi-discipline programme, and it is envisaged that the Edinburgh Carer Strategic Partnership Group (ECSPG) will also have a role.
• Exploring how the carer support organisations/teams/services will exploring closer working with the Marie Curie Caring for Someone at Home – End of Life at Home, Hospice or Hospital – Learning from Lived Experience Project. Identifying the gaps and resources needed to support carers and families to have more choices around End-of-Life care at home.
• Advocacy
• Access to fast tracked ACSP and YCS

Carers, Hospitals and Healthcare: How Edinburgh will contribute to the outcomes