Perth and Kinross Joint Adult and Young Carers Strategy 2023-2026

Definition of young and adult carers

The Carers (Scotland) Act 2016 defines an unpaid carer as an 'individual who provides or intends to provide care for another individual (the 'cared-for person').'

An unpaid carer can be a child or an adult who gives help and support to someone else who has a disability, illness, health condition, a mental health or substance use issue, and/or who is elderly or frail. The person being cared-for may be a spouse, parent, child, sibling, a relative, neighbour or a friend of the carer.

Unpaid carers can also be parent carers or kinship carers who provide care to an ill or disabled child to a greater extent than would be expected in a parenting role. Unpaid carers may have paid or voluntary work other than their caring role, be in education, retired, or be unemployed. They may be in receipt of welfare benefits, pensions or be earning wages unrelated to their caring role.

All carers provide a vital contribution to their families and to society. They provide often unseen care and support to relatives within their household and the wider family, without acknowledging the impact on themselves. Additionally, they can often keep families together and reduce the need for organised and formal care services.

This strategy is for carers of all ages:

• Young carers, who are under 18 or are 18 and are still at school, who live within Perth and Kinross, even if the cared-for person lives outside of this area.
• Adult carers, who are 18 or over, who have left school and are caring for someone who lives within Perth and Kinross, even if the carer lives outside of this area.

Young carers

The impact of caring on young carers

Being a carer can be a positive experience for a young person. The caring role can give a sense of responsibility and identity and can build self-confidence and esteem. By making an important and positive contribution to family life, the young carer can feel more valued and included and can enable them to develop important life skills. However, when young people are required to take on too many caring responsibilities, or conduct caring roles that are not appropriate, there can be limiting or adverse effects on their health and overall wellbeing. This can impact every area of their lives including school, health, community, and home:

• It is important to support young carers to consistently attend school.
• Young carers may require support to complete homework on time and may require additional support in class.
• Without the right support their young carer role can potentially limit the young person's ability to achieve their full potential.
• Young carers often feel different from peers with an increased likelihood of being bullied - view the PKC Anti-Bullying Strategy.
• The demands of consistently providing intensive physical care for the cared-for person can impact on a young carer's physical and emotional wellbeing over time.
• Taking on responsibilities that would normally be conducted by an adult can lead to a young person experiencing mental health and wellbeing issues, such as depression and stress.
• Young carers may not be looking after themselves as their focus is on the cared-for person.
• They may be worrying about the cared-for person and may have very little free time to socialise so their friendships can be limited. This could lead to increased isolation such as creating barriers to joining after school clubs and/or other groups which normally help build relationships.
• Some young carers may be reluctant to bring friends home due to their home environment and may also experience bullying within their community for being different.
• Financial constraints within the family home can limit the life opportunities of young carers. The effects of a cared-for person's disability can add additional costs to the running of a home such as extra heating, specialised equipment or maintaining a special diet, therefore limiting available funds.
• Where there is a barrier to learning, under The Education (Additional Support for Learning) (Scotland) Act 2004 (as amended 2009) schools have a responsibility to identify needs and keep these under review following the PKC staged intervention framework. For most young carers, their needs may be met at a universal level by the class teacher(s).

Working in partnership

We recognise that meeting the needs of young carers cannot rest with one organisation alone and that it takes strong partnerships and effective joint working across a wide range of services, including the Third Sector, to support the varied needs of young carers and their families.

There will be occasions where there will be a need for partnership working across services for adults and children when assessing the needs of the young carer. The relevant professionals from across services will work together with the young carer and the person they give support to, to identify the necessary supports. This may involve drawing on appropriate resources from across services as necessary to meet the young carer and cared- for person's needs to prevent breakdown and keep families together.

Zuhair's story

Zuhair is a young carer for his 2 younger siblings both of whom were diagnosed with a form of ataxia 6 years ago. Ataxia is a progressive degenerative disease that affects balance, control, and eye movement. Caring for his siblings involves the whole family and this became harder following a car accident which left Zuhair's mother temporarily unable to walk.

Zuhair started to care more for his siblings to enable his father to keep working. Like so many young carers, this has at times left Zuhair feeling isolated and struggling with his mental health. Zuhair was referred into PKAVS young carers' service and started receiving support in May 2019. The support worker at PKAVS acts as a lifeline for Zuhair and his other sister Layan, also a young carer for the family. Zuhair and Layan have been offered support through accessing one-to-one support sessions, attending weekly respite groups during school term time, going on day trips, and having longer residential breaks away during school holiday periods.

Zuhair also attended private tuition lessons through the Educational Attainment Service that the young carers service offers (Easy- c), and his sister Layan will start to access that same service soon. Despite their caring roles at home, both Zuhair and Layan regularly attend PKAVS Young Carers Voice forum which meets regularly so the service is always well informed about the challenges young carers are facing. This commitment to making sure young carers' voices continued to be heard, despite everything else both Zuhair and Layan have going on in their lives, is typical of the caring nature of most young carers.

Young adult carers

When young carers reach 18 years and are no longer in school, they are entitled to an Adult Carer Support Plan (ACSP). The carer will be offered continued support with an ACSP. This will be completed with the Young Adult Carer Support Worker at PKAVS. It is vital that there is no gap in support for the young person.

Although the Carers Act does not give special definition for young adult carers, we commission services from PKAVS for young adult carers (aged 18 to 24) as we recognise the importance of supporting carers through the transition phase from child to adult.

The impact of caring on a young adult carer can be a varying combination of the impacts on young carers and adult carers. There may be:

• limited opportunities to socialise, to make or sustain friendships
• difficulties in meeting education demands at school, college, or university
• challenges in accessing work opportunities or maintaining jobs where employers lack awareness about carers
• feelings of guilt, anxiety, stress, worry and isolation
• concerns about moving away, leaving their family and the person who needs support

According to the 2011 Census, young carers and young adult carers are twice as likely to report a mental health condition compared to those without caring responsibilities, and young adult carers are three times more likely to report a mental health condition compared to young carers. While the information throughout this Strategy for young and adult carers is also applicable to young adult carers, it is vital to ensure that this age group of carers is also supported throughout this important transitioning stage of life from child to adult.

Adult carers

The impact of caring on adult carers

Adult carers may give physical support, help with practical tasks, and provide emotional support such as reassurance and encouragement. Caring can be extremely demanding but also rewarding. Care may be provided throughout the day and night, seven days a week, or may fluctuate depending on the needs of the person they look after. Each carer, and their caring situation, is unique. As such, carers experience varying degrees of positive and negative impacts.

Sometimes, a caring role can feel very challenging and can lead to:

• social isolation due to not having time to develop or maintain relationships with friends or family members
• stress of co-ordinating care with wider family responsibilities
• having very limited or no opportunity to have 'time out' or a break to recharge
• difficulties in maintaining education or employment, leading to the loss of opportunities and income
• increased financial pressures due to the caring role
• making long-term lifestyle changes
• health and wellbeing being impaired due to pressure and stress of the caring role

Working in partnership

The Health and Social Care Partnership works with the Third Sector and other providers to help carers get the support they need at the earliest opportunity.

Our main partners at the Carers Centre based in Perth is run by PKAVS. They provide ongoing support through the telephone befriending scheme, through Time for Me grants, carer peer support groups and other ongoing support.

We also work closely with Crossroads who provide Sitting Services, supporting the carer to take a break from their caring role along with other regulated services across all localities.

Tom's story

Tom has provided support for his partner for more than 5 years and is her main carer. Tom's partner has severe and enduring mental health issues and is currently being supported by the mental health team. Tom's partner has had admissions to hospital due to suicidal thoughts and a suicide attempt. Tom is 49 years old and lives in Perth and Kinross. He was a long- distance lorry driver but constantly worried about leaving his partner on her own. He was always on edge and phoned her several times a day to check she was ok. Tom stopped working to become a full-time carer as he found it difficult to provide the care needed by his partner whilst working.

Tom's partner's mental health has deteriorated recently, and he is really struggling. He was not getting any support for himself although he had been told that he seems to be managing.

Tom has two brothers but, as he does not have a good relationship with his family, he does not receive any support from them.
Tom spends all his time providing support to his partner including, helping with food and fluid intake, helping with medication, and offering her a lot of emotional support. Most of his time is spent caring for his partner, round the clock.

Tom said that his caring role changed his entire life. He is not able to see his old friends or have any kind of social life. His caring role leaves him isolated and lonely.

Tom stated that in the last five years he has only been on holiday once with his partner. He thought that this was the best time of his life, and he really enjoyed it.

Until he discovered the Carers Centre, Tom had not received any support while caring for his partner. Without support he had become tired, stressed and quite lonely because of his commitments. Tom felt it difficult to find the right type of support for himself.

Tom would like to have more information regarding his partner's mental health condition to enable him to provide better support to his partner and help him understand more what his partner is going through.

Tom feels confident and supported due to input from the Support Worker at the Carers Centre and knows that he can contact him for support, advice, and information. Tom wants to engage and be an active part of future activities and groups as he feels this may help maintain his own mental health and help sustain his caring role and to have some respite.

Tom now knows he is not alone in his caring role, and he can get support from peers in a similar situation.

Karen's story

Around May 2022, Karen and her husband moved from a different local authority area to Crieff, to be nearer their daughter. Karen's husband had a head injury 24 years ago which meant Karen became an unpaid carer. Over the years Karen's husband's needs changed, and he has now been diagnosed with vascular dementia. He also has frontal lobe epilepsy and several other issues.

During COVID-19, Karen found lockdown a very isolating and worrying experience. The couple didn't have a social worker at that time, and Karen didn't have any support.

The week they moved to Crieff, Karen was told about the Carers Centre and the assessment process. They attended their first Carers Cafe where she met one of our Carer Support Workers and she became Karen's support worker. Her support and help have turned Karen's life around.

Karen hadn't ever asked for help for herself before and has had mental health issues. She didn't realise that she could have had a support worker for her own support.

In a very short time, with the Carer Support Worker's help and support, Karen now has respite for her husband at Parkdale Residential Home in Auchterarder. Karen has used this service 4 times, one of which was a funeral with very little notice. Karen noted that the friendly staff make Karen's husband very welcome which reduces her worry.

Karen also has a Crossroads carer for 3 hours a week while she attends a pottery class.

Karen has made new friends through the Crieff Carers Café; and believes that peer support is very important. People who have knowledge of her situation and can offer a listening ear and support. She also has been given vouchers for complementary therapies from the Carers Centre.

The move to Crieff has been very positive and because of support from Social Work Services and the Carers Centre Karen feels valued as an unpaid carer.

* Names changed to protect anonymity.
 

Introduction

We are delighted to present our refreshed Joint Adult and Young Carers Strategy 2023-2026 (PDF, 1 MB) underlining our continued commitments to unpaid carers of all ages. This strategy will continue to progress and embed the actions from the Joint Carers Strategy 2019-2022, while reflecting on significant events of the previous 3 years, the impact of COVID-19 and the cost- of-living crisis on unpaid carers.

Our vision is to fully support all unpaid carers in Perth and Kinross to have a life alongside caring, ensuring that resources are used effectively to meet the gaps identified in support provision. Our vision for young carers is that they are supported to be children first and foremost, having similar opportunities as their peers.

Like our previous strategy, this strategy is shaped by carers, their families, service users, and staff from the Health and Social Care Partnership (Perth and Kinross Council, NHS Tayside, and Third and Independent Sector organisations). Views of young and adult carers and their representatives have been sought via consultation into their needs, challenges, hopes and concerns to ensure that this strategy is relevant and useful. We also listened to what carers told us about continued or new gaps in service provision, ideas for improvements and what works well for them. In Chapter 4 of this strategy, we outline the feedback we received and set out both our commitments and the outcomes we will deliver in response to that feedback.

The strategy will be reviewed annually, in addition to ongoing monitoring, to ensure that it remains robust and meaningful, and will be in place until 2026.

The Joint Carers' Strategy focusses primarily on services specifically for carers. However, it should be noted that services for the person being cared-for can and often does have a significant impact on the carer's quality of life. Information on these services and the work we intend to do to improve support, can be found in Perth and Kinross's Health and Social Care Partnership's Strategic Commissioning Plan and supporting Strategies.

Policy Statement

We believe that unpaid carers of all ages play a vital role in the lives of the people they care for and in the wider community. We are committed to supporting carers to ensure they can continue to provide that care for as long as they wish. Our aim is to ensure that carers are recognised and valued as equal partners in care to plan the personalised support they need in their caring role; and to support carers to live in good health and wellbeing, allowing for a life of their own alongside caring, to the best of our ability.

The Legislative Framework

The strategy is underpinned by the Carers (Scotland) Act 2016, and Social Care (Self-Directed Support) (Scotland) Act 2013.

Carers (Scotland) Act 2016

This legislation came into effect from 1 April 2018 and enhances the rights of carers in Scotland. The purpose of the Carers Act is to ensure that unpaid carers, who are able and willing to continue caring, are better and more consistently supported to have a life alongside caring. For young carers, the intention is to ensure that they are children first and foremost, and that any caring role they have is secondary.

This legislation gives carers a right to be offered, or to request, an Adult Carer Support Plan or Young Carer Statement, which supports the carer to identify the advice and support that is needed to reduce the impact of caring on their health and wellbeing and other aspects of their lives. Following the introduction of the Terminal Illness Regulations in July 2021, carers supporting someone with a terminal illness must be offered Adult Carer Support Plans which have to be completed within specific timelines.

The Carers Act also puts a duty on the Health and Social Care Partnership to set local eligibility criteria for supporting carers, to develop the adult carer support plan and young carer statement, to develop a Short Breaks Services Statement, to involve carers in carers' services and in hospital discharge planning, and to maintain advice and information services.

We have worked, and will continue to work, collaboratively with carers, their families and groups who represent carers to implement the changes required under this new law locally across Perth and Kinross.

Social Care (Self-Directed Support) (Scotland) Act 2013

Under this legislation, we will provide information and advice about Self-Directed Support (SDS) options. We have a duty to offer people who are eligible for social care, a range of choices over how they receive their social care and support. SDS allows people, their carers, and their families to make informed choices on what their support looks like and how it is delivered, making it possible to meet agreed personal outcomes.

SDS includes a range of options to ensure everyone can exercise choice and control. Carers have four options in relation to how their budget is controlled, which are:

• choosing to receive a Direct Payment (also called a cash payment)
• choosing to have the funding allocated to a service provider of their choice
• choosing to have Perth and Kinross Council to arrange a service for the carer
• choosing to have a mix of the above options for different types of support

Carers can use SDS in different ways; for instance, to support the carer to live in their own home. Outside of the home, it could support the carer to go to college/work or enjoy leisure pursuits. It could help the carer arrange for a personal assistant (PA) or be used to help to provide a short break or equipment for the carer.

Objectives and Strategic Framework

This Strategy reflects and supports the five commitments of the Strategic Commissioning Plan for the Health and Social Care Partnership (HSCP):

• Working together with our communities
• Prevention and early intervention
• Person-centred health, care, and support
• Reducing inequalities and unequal health outcomes and promoting healthy living
• Making best use of available facilities, people, and other resources

To meet these goals, we want to provide more opportunities for people to achieve their potential at all life stages, using these themes which underpin the work of the Health and Social Care Partnership.

We will listen to and work with carers along with their families and friends in accordance with the Health and Social Care Standards (my support, my life):

1. I experience high-quality care and support that is right for me
2. I am fully involved in all decisions about my care and support
3. I have confidence in the people who support and care for me
4. I have confidence in the organisation providing my care and support
5. I experience a high-quality environment if the organisation provides the premises

Using these standards, we will prioritise and respect people and their choices when they seek support.

The strategy embraces the National Health and Wellbeing Outcomes, in particular Health and Wellbeing Outcome 6: People who provide unpaid care are supported to look after their own health and wellbeing, including reducing any negative impact of their caring role on their own health and wellbeing.

In addition, the strategy embeds the Equal Partners in Care (EPiC) core principles:

• Carers are identified
• Carers are supported and empowered to manage their caring role
• Carers are enabled to have a life outside of caring
• Carers are free from disadvantage and discrimination related to their caring role
• Carers are fully engaged in the planning of services
• Carers are recognised and valued as equal partners in care

The strategy also reflects the Perth and Kinross vision that children and young people will have the best start in life and will be supported to achieve their potential. This is in line with our commitment: Getting it Right for Every Child (GIRFEC) and the ethos of the Carers (Scotland) Act 2016, which places emphasis on young carers being children first, carers second, ensuring that they are supported to achieve the best possible outcomes in life.

The strategy also takes account of the direction and considerations made by the National Carer Strategy and the Care Inspectorate Inquiry into Adult Carers' Experiences of Social Work and Social Care Services, both published in December 2022. We have used these to inform the Action/Delivery Plan.

The Scottish Government published the National Carers Strategy in December 2022 which embeds 89 actions within 5 themes:

1. Living with COVID-19
2. Valuing, recognising, and supporting carers
3. Health and social care support
4. Social and financial inclusion
5. Young carers

The Care Inspectorate Inquiry into adult carers' experiences of social work and social care services, highlighting 8 considerations to support continuous improvement in the experience of carers. These are:

1. Develop and improve the accessibility and availability of short breaks available to support carers to continue to care.
2. Promote awareness of the rights that carers, including 'hidden carers', have to an adult care support plan and the benefits of having one in place.
3. Improve carers' experiences of systems and processes including initial access, resource allocation and reviews.
4. Ensure there is refocus on prevention and early intervention, self-directed support, and outcomes-focused practice for carers.
5. Further support social work and social care staff to be more knowledgeable about the Carers (Scotland) Act 2016.
6. Further develop with carers engagement and consultation approaches including evaluation of these approaches and how best to feedback carers' views.
7. Ensure that local carer strategies, short-break services statements and eligibility criteria are up to date and are co-produced with carers and carers' organisations.
8. Ensure there is meaningful and representative inclusion of carers in planning and governance groups that impacts positively on service improvement.

Equalities

In accordance with the Public Sector Equality Duty (General Equality Duty), Perth and Kinross Health and Social Care Partnership, and Perth and Kinross Council Education and Children's Services have a duty to eliminate unlawful discrimination, harassment, and victimisation and to advance equality of opportunity between people who share a protected characteristic. Protected characteristics, under equalities legislation, include age, race, sex, disability, colour, ethnic origin, religion or belief, sexual orientation, or gender re- assignment. Under the Fairer Scotland Duty, we must actively consider how we can reduce inequalities of outcome caused by socioeconomic disadvantage when making strategic decisions. Although not named as having a protected characteristic, carers are covered under Equalities legislation by their association to the person who they care for who may have one or more protected characteristic.

Monitoring, reviewing, and reporting on the Strategy

The achievement towards meeting the outcomes on this Strategy will be monitored through the Carers Strategy Steering Group and the Carers Strategy Group. For adult carers, reporting is required to the Strategic Commissioning Board, HSCP Executive Management Team and the Integration Joint Board and Audit and Performance Committee and for young carers through Learning and Families Committee.

Carer support in Perth and Kinross

At the time of writing, National Census for Scotland statistics have not yet been published. Link to Carer statistics on Carers Pages on pkc.gov.uk when available.

Identifying carers

We estimate that approximately 2,800 adult carers are registered across PKAVS, Perth and Kinross Health and Social Care Partnership and at the Perth and Kinross Carers Support Project at Change Mental Health (formerly Support in Mind), which is an increase since our last Strategy. This suggests that up to 80% of adult carers might be missing out on preventative support, information and advice that might assist them in reducing the impact of their caring role. Whilst this likely includes a proportion of carers who do not feel they need or want support, there is still a disparity between the number of carers in the 2011 census and the number of carers registered for support in Perth and Kinross. At the time of writing, we do not have information from the most recent National Census, but we anticipate that there will be a greater number of carers identified, not least following the COVID-19 pandemic where many people took on caring roles or increased the amount of unpaid care they provided. Statistics will be available on the Supporting Unpaid Carers pages of pkc.gov.uk when published.

Timescales for completing Young Carer Statements and Adult Carer Support Plans

When we receive a referral from a carer or third party on behalf of the carer to receive information, advice and/or support, we will consider the priority and urgency of each situation. When it is brought to our attention that urgent support is required, we will prioritise this. Demand for services is generally high and may be subject to external factors which are out of our control. However, we aim to provide carers with:

• Young Carer Statements within 12 weeks of their request
• Adult Carer Support Plans within 10 weeks of their request

These timelines will be kept under review to ensure that we are meeting needs appropriately.

Current support available in the local area

Short Breaks Services Statement

Perth and Kinross HSCP's Short Breaks Services Statement contains a more extensive list of the short breaks services available for carers locally and nationally. This has been reviewed as part of the refresh of the Strategy. The list below provides information about support currently available to carers from commissioned services and other agencies.

Local resources for young and adult carers

• PKAVS Carers Centre has three separate services to support carers from school age upwards. It provides a range of information, advice, and support to carers. Types of support include respite and activity groups for young and young adult carers, social (massage) therapies, carer cafes, training opportunities, short breaks, day services for people with long-term conditions or disabilities, telephone befriending service, one-to-one support from dedicated carer support workers, Self-Directed Support advice, and up-to-date information about different resources available in their local community. Information and support in completing emergency plans can also be provided, as well as peer support for unpaid carers whose role has changed due to bereavement or when the cared-for person enters long-term residential care (the 'Bridge Project').
• Crossroads primarily aims to provide respite care for carers in the community, with home- based respite and domiciliary care service for adults with any of the following: mental health issues, dementia, physical disabilities, learning disabilities, or other serious health conditions.
• MECOPP (Minority Ethnic Carers of People Project) works with Gypsy/Traveller carers of any age across Perth and Kinross who live in housing, on sites and in roadside camps. The support includes outreach work, community-led research, filmmaking, limited case work and training.
• Change Mental Health is a Mental Health Organisation providing information and support for people who have mental health problems or mental illness and for their families and carers. It runs a Carer Support Project in Perth and Kinross, providing individual support, as well as a range of information and advice.
• Alzheimer Scotland is the local point of contact for people living with dementia, family members, carers, and communities.
• Independent Advocacy Perth and Kinross provides information and advocacy support when needed by carers.

There is also a range of universal services available such as leisure centres, libraries, support groups and emotional support.

Statutory services support for young and adult carers

Perth and Kinross Health and Social Care Partnership can provide a range of services to meet the carer's identified needs in their Support Plans. Perth and Kinross Council's Education and Children's Services can support with access through the Carers Centre for young carers with a Young Carers Statement and access to appropriate services. These include arranging care for the cared-for person, day care services, short breaks/respite, telecare support, emergency carers card, and rapid response.

Health Services will provide support at the point of diagnosis, along a health pathway, for the ongoing care and treatment and with discharge from hospital. Hospital discharge planning is also supported by a dedicated hospital link worker, social care officer and palliative carer support worker.

Social Prescribers offer signposting and support for people to access and use community- based activities, to help address influences which contribute to health problems, with the aim of improving health and wellbeing.

Perth and Kinross Council Welfare Rights Service offers advice and information on benefit entitlements when circumstances change, when carers are struggling financially or when they have been turned down for a benefit or are unhappy about a benefits decision. Under Carers (Scotland) Act, carers have a right to information about income maximisation to ensure they receive the benefits they are entitled to. Carers may also find it helpful to speak to Citizens Advice who can help with form filling as well as providing advice on benefit entitlement and any other help they may be able to receive locally.

Progress summary

External context

COVID-19
Progress on our Carers Strategy 2019-2022, which was approved by our Integration Joint Board and Lifelong Learning Committee on 6 November 2019, was soon impacted by the COVID-19 pandemic and the restrictions placed on all of us to reduce the spread of the virus.

These restrictions had an immediate effect on carers and the people they care for, from the reduction in availability of support for the people they care for, access for medical appointments, and the requirements around protective coverings. Many carers were rightly worried about the risks of introducing COVID-19 to the home of the person they care for and there continue to be concerns around this. Some people who had not been carers prior to the pandemic became carers as they looked to support more vulnerable members of their families, during the initial lockdowns when normal activities like shopping and moving outdoors were restricted.

In partnership with the Carers Centre, we initially responded by increasing the telephone contact with unpaid carers, following this, the Carers Centre was a point of contact for PPE (Personal Protective Equipment) for unpaid carers including deliveries to carers who could not travel. We also set up a short-term sitting service to enable carers to have a break from caring whilst their loved ones were looked after. This service ended in September 2020 as commissioned services were able to re-establish cover.

We appreciate that some carers remain concerned about COVID-19 as it continues to circulate in the wider community, and whilst most of the population have received vaccination cover, vaccinations may not be available to all due to health conditions. Ongoing support is available to carers from Scottish Government and through Scottish National Health Service.

Cost-of-living crisis
The cost-of-living crisis is an ongoing concern to many carers. Prior to this, carers were still subject to financial insecurity due to the costs associated with looking after someone with a disability, such as heating, power for equipment, special dietary needs etc. This may also have been exacerbated by restrictions on carers' earning if they are in receipt of Carer Allowance and the likelihood of them having to reduce hours of work or stopping work due to their caring responsibilities. Some of the costs have been mitigated by government interventions however, carers have recently reported taking out loans and getting into debt due to the increased costs of daily living. Scottish Government funds through Shared Care Scotland were made available through a hardship fund in early 2022 which was administered by the Carers Centre locally.

Progress on our Outcomes

Despite the challenges we faced due to the COVID-19 pandemic, and the many challenges faced by carers we were able to make good progress on our Joint Carers Strategy 2019-2022.

• Outcome 1: Provide clear, reliable, accessible information about local and national support which is available across a wide range of locations in Perth and Kinross
  We used a variety of methods to provide information to carers about the support that is available for them. The restrictions brought about by the pandemic made it necessary for us to provide information in new and innovative ways including online and hybrid presentations for Carers Connect and Carers Weeks. We also promoted support for carers with banners and advertising at the Vaccination Centres set up in Perth and Kinross throughout the pandemic. We used digital advertising, podcasts and had a takeover of the Perth and Kinross Council's Facebook page for Carers Weeks. We also revised our core information with assistance from Carers Voice to create a single booklet which we promoted across Perth and Kinross, working with CulturePK. We also worked with Perthshire Welfare Society to improve the support available to carers from the global ethnic majority. All this work is ongoing to ensure that as many carers from all backgrounds and communities as possible know how to access support to enable them to continue caring.
• Outcome 2: Promote awareness about the Carers Act in the local community and workplaces to improve early identification and support of carers
  We developed training materials for professionals about carers' rights and the support which is available which we commenced in November 2021, investing in a dedicated Learning and Development Officer in 2022 to embed and progress this training. Individual locality and community support teams and our volunteer support agencies are all carer champions.

We worked with Carer Positive to engage with employers in the area however, we were unable to increase the number of employers with Carer Positive accreditation. We will however continue to engage with local employer groups and individual employers to promote Carer Positive to ensure the early identification of working carers, and provide better support to working carers, in line with the Scottish Government's Fair Work agenda.

• Outcome 3: Ensure carers are listened to and have their opinions valued by professionals
  We have worked to provide support to carers looking after someone in hospital with our Hospital Link Worker and invested in a Palliative Carer Support Worker and Social Care Officer to improve the identification of carers to involve them in the discharge process and provide support to them. Our investment in a dedicated Palliative Carer Support Worker has enabled us to meet the timelines for carers who support people with a terminal diagnosis in accordance with the Terminal Illness Regulations, introduced in July 2021 to provide immediate support for the carer when facing a life-changing situation. Alongside our locality Carer Support Workers, we also have dedicated Carers Support Workers in i-Dart, Older People's Services and in the SCOPE team supporting families as young people with complex needs transition from school.

Training has been provided to Social Work professionals in both the Health and Social Care Partnership and Education and Children's Services to ensure that they involve carers as much as possible in planning the support for those who they care for. We will further develop this training to widen the scope and include healthcare professionals. We developed the Carer Experience Survey so that we can be sure that the health and wellbeing of carers is supported and to highlight areas for improvement.

• Outcome 4: Provide opportunities for carers to participate as active partners to the planning and shaping of carers' services in their local areas including services for the people they care for
  We have listened to carers' suggestions on how to improve support for carers over the lifetime of the previous Strategy, involving carer representatives as equal strategic members in our Strategy Group, working groups, and in the Strategic Planning Group. Carer representatives are also non-voting members of the Integration Joint Board, ensuring carers' perspectives are represented across the Partnership. Carers and their representatives have been involved in the development of the refreshed Strategy.

We were also part of the Carers Trust pilot training programme to give carers an insight in to how they can represent the views of carers in their area to improve services. We have identified Parent Carers as a care group who are often overlooked and have engaged with local Parent Carers as part of the Promoting Variety project to improve the support they use through co-production. We have listened to carers through consultations and working together alongside national initiatives through the lifetime of the Strategy, however we will continue to explore better ways of supporting carers.

• Outcome 5: Develop wider carer networks to enrich peer support
  We have worked with Richmond Community in Crieff from June 2021 and Dementia Friendly Aberfeldy from February 2022 to establish local carer cafés and enable improved peer support. Our café in Blairgowrie in partnership with Elder Voice commenced in April 2023. We have continued to support PKAVS in developing online and offline peer support for carers across the area including the establishment of a Carers' Choir 'Gie it Laldy', which meets weekly at Perth Theatre and is open to carers and those they care for. We worked with Carers Voice to listen to the concerns of carers and to ensure those concerns are addressed with information and support.
• Outcome 6: Improve provision of flexible and personalised support, to support the emotional/physical wellbeing of carers and to support them to have a life alongside caring
  The wellbeing of carers is supported through the Carers Centre which provides Social and Complementary therapies, Time for Me grants which enable carers to have a short break and the telephone befriending service in which we further invested in from 2021 to provide out of hours support. Training opportunities, which give carers the skills and tools to support themselves and those they care for, are provided through services commissioned from the Carers Centre and at New Rannoch Older People's services. These were delivered as in-person and online sessions to cover a wide range of topics including Legal Must-Dos and Power of Attorney, Adult Support and Protection, Moving and Handling, Self-Directed Support and Technology-Enabled Care. Self-Directed Support is key to improving personalisation of support to carers and we have been working with other local authority areas to see how we can improve to make this easier for carers.

Based on feedback from carers we have supported the introduction of the Community Tipi - a large mobile Tepee with a wood-burning stove, which is available for use by community groups supporting carers. This will continue to be rolled out in the next few months. We are also seeking to establish volunteer befriending interventions to improve support where regulated services are, or are not involved.

Through the Carers Centre and our Social Prescribers, we are involved in supporting community groups to ensure that our services and support are sensitive to cultural differences. Through provision of support in the community we have reduced the percentage of admissions to long term care due to carer breakdown from 30% to 16%. We have reviewed current supports to assess their adequacy for support to carers and we will continue to look for ways to improve the support for carers, particularly in rural areas, through the life of this strategy.

• Outcome 7: Young carers will have the best start in life and will be supported to achieve their potential irrespective of their caring responsibilities
  As at March 2023 there are 613 registered young carers with the Young Carers Service. During 2022, 172 Young Carers Statements, which identify the young carers' needs outcomes, were completed for newly identified young carers, enabling us to signpost them to the appropriate agencies for support. There is, however, a backlog of Young Carers Statement Reviews as completion of Statements have had to be prioritised.

173 young carers accessed the Education Attainment Service, with tutors delivering 1,231 individual tutoring sessions. There have been 30 weekly primary tutor groups with an average of 15 young carers in attendance and 30 weekly nurture groups provided.

All 11 secondary schools and 48 feeder primary schools have a designated young carers champion who have quarterly meetings with PKAVS/Young Carers Social Worker to discuss issues, challenges, share information and best practice.

150 young carers have accessed alternative respite funds for respite opportunities within their communities and 50 young carers applied for Time4me funding for short breaks through Shared Care Scotland. We also supported day trips, drop-in sessions and outcome focussed groups. Over 250 young carers and their families attended the PKAVS Christmas Extravaganza.

Mental wellbeing support has been provided through partnership working with Mindspace, Saints in the Community and All-Strong Scotland.

Preschool-age young carers are the responsibility of the NHS for young carers support.

Young Carers Voice forum meets every 2 weeks to discuss challenges being faced by young carers and any additional support they may require. The Young Carers Voice Forum will be establishing a sub-group around mental health for young carers.

The Young Carers' Social Worker is available for advice and guidance to the Social Work teams and has attended Team Meetings to share information. More widely, the PKAVS Young Carers' Service is first point of contact for all agencies who have enquiries or wish to discuss referrals.

Carer consultation and feedback

Timeline of how the strategy was developed

Embracing our vision that carers should be equal partners in care and be involved in shaping the services that are designed to support them, the development of this strategy was undertaken through engagement and consultation with young and adult carers, their families, and the professionals who support them. Across Perth and Kinross, carers were able to provide their views through the survey and at direct events in the community. These gave us valuable opinions and insight into carers' experiences. We have based this new strategy on what carers have told us matters to them.

This was what the consultation process looked like:

• From January 2019: Ongoing consultation and dialogue
  Through strategy and programme board meetings, we have continued to seek the views and experiences of carers, including Carers Voice, professionals, and our Third Sector partners, to inform and shape this strategy and the Action Plan.
• March 2022 - May 2022: The consultation survey was created with carers
  The consultation survey was developed through several discussions held with key stakeholders, including separate interest groups with adult carers, parent carers and young carers.
• June 2022 - August 2022: The consultation
  We consulted with carers using the finalised survey. This was done through social media, letter, email, focus groups, consultation stalls and events.

Consulting with professionals

Various professionals from within the HSCP and from our Third Sector and commissioned services were interviewed for their views about the support available for carers and the challenges they face.

Consultation with carer representatives

We consulted with carer representatives and heard their views on the support that carers receive and their experience of being carer representatives with the Health and Social Care Partnership.

Risk events

In December 2022 and January 2023, we held two risk events to ensure that the risks to carers were identified. The purpose of the workshops was to ensure that the Health and Social Care Partnership, identifies actions to mitigate the risks and further inform our delivery plan going forward.

Summary of the results from the consultation - 207 respondents

Carers provide a range of support to the people they care for; most said they kept the person they care for safe followed by providing emotional support. These responses are consistent with those we received from our previous Strategy. 

The largest proportion of carers who responded provide care and support for parents, a spouse or partner followed by caring for their child. 

Carers reported the greatest impact on them to be with their health and wellbeing and their life balance. 

Carers said the support they used the most came from friends and family followed by information and advice. 

The types of support carers said they would most like to have include, firstly a discount card, secondly support to enable them to have a break from caring, help with emergency and future planning and help with welfare benefits and advice. 

Work, education and training

Whilst support for education, training and employment did not score highly overall, carers of working-age experienced the most impact on their work, education, and training. 

In addition, 32% of carers who work said they did not feel supported by their employer. 

Parent carers said they felt undervalued and were not often able to get support for themselves as their child may not meet the criteria for support. 44 carers who responded to our survey said that they were looking after their child. Most get support from family and friends followed by PKAVS. 

However, over 65% of carers generally said they are satisfied with the support they receive as carers. 

In addition, 76 young carers told us about the support they receive and the things they would like to have

29% said they got enough breaks from their caring role but 71% said they did not. 

34% of young carers believed they have been offered a Young Carers Statement. However, 44% were unsure. 

For those young carers who said they had a Young Carers Statement in place the benefits they identified included:

• I'm listened to and supported with worries and have had education support.
• I sometimes get some money to do something away from my carer role.
• I get one-to-one support from someone that truly cares.
• Better understanding from school. Increased opportunities for extra activities.

67% said they attended PKAVS Young Carers Service and 33% said they did not attend the service. 

37% of young carers felt they had enough support as a young carer, 29% were unsure and 34% said they did not. 

43% of young carers said they felt supported as a young carer by their school or college and 57% said they did not. 

Examples of the kind of breaks that the young carers identified demonstrate the impact of caring on the young carers' lives and the need for them to be supported to be children first and foremost:

• A break away from my caring duties. Relaxing, having fun.
• Going to pictures or go karting.
• A break away from being responsible for my family just being me would be great with no stress.
• Doing no chores.
• A day out at a museum or activity like horseback riding or laser tag.
• Some time away from helping with my brother and having fun. Making new friends.
• Basketball and a McDonalds.
• Something distracting and interactive.
• A day out somewhere.
• Camping would be really fun.
• Away from my sister. She's really hard work and I struggle sometimes.
• Time away doing fun things with others.
• Love being in a caravan. It's like an adventure.
• Break away.
• Museum in relation to transport and military in the UK.

What adult carers said matters most to them

These are the key themes from the feedback of carers in the consultation, and what carers told us matters most to them:

• I want support for the person I care for and to be more involved in the discussions around their care.
• I want to be supported to have a break from caring.
• I want to be updated when there are changes that affect my support or the support for the person I care for.
• I want professionals to listen to me more.
• I want the process for my support to be simpler.
• I want there to be a variety of support options in rural areas of Perth and Kinross.
• I want more specialist support for the person I care for.

We used these to develop our key strategic outcomes (set out in Section 18) to support carers of Perth and Kinross over the next three years, which will be delivered by the Action Plan (set out in Section 19).

Our Strategic Outcomes: What carers can expect

Our response to the consultation feedback by carers, is that by 2026, all unpaid carers can expect:

• clear, reliable, accessible information about local and national support
• promoted awareness about unpaid carers and their rights to improve early identification and support
• to be listened to and have their opinions valued
• to have opportunities to participate as active partners to the planning and shaping of carer services in their local areas
• the development of peer support opportunities across the area
• improved provision of flexible and personalised support, to support their emotional and physical health and wellbeing and to have a life alongside caring
• in addition, young carers will be supported to achieve their educational potential, to have similar opportunities as their peers, and to enjoy their childhood.

Young carers in particular can expect:

• We will support the growth of local support for young carers.
• We will work with young carers over the life of this strategy to make the service changes required to better meet their identified needs.
• We will support young carers and their families to improve their lives where the caring role is impacting their wellbeing.
• We will work across services to meet the needs of both the young carer and the cared- for person.
• We will ensure support is in place to help identify and support young carers as early as possible. We have invested in a Young Carer Support Worker to work with our schools to raise awareness about the needs of young carers.
• We will enhance resources to allow schools to work creatively to reduce the attainment gap. Expanding opportunities for young carers to achieve their full potential.
• We will increase a variety of respite opportunities by making funds available for young carers to make choices about their own needs and interests.

Our Commitments and Delivery Plan

Our commitments, which are based on the EPiC principles and developed with carers to support the delivery of our strategic outcomes (set out in the previous section and in our delivery plans), are:

1. Carers will be supported with clear information about consistent and flexible support to empower them to manage their caring role.
2. Everyone will have the information, opportunities, and support to be identified as a carer.
3. Carers' voices will be critical to influencing the planning, development, and improvement of supports.
4. Carers will be supported to actively participate in developing a course of supports within the local community to enable them to have a life alongside their caring role.
5. Carers will be valued, listened to, and empowered to share their experiences.
6. We will provide specialist and person-centred support to avoid disadvantage to carers of all ages.

Outcome 1: Carers can expect clear, reliable, accessible information about local and national support Delivery Plan 1 (PDF, 124 KB)

Outcome 2: Carers can expect promoted awareness about unpaid carers in the community and workplaces to improve early identification and support of carers Delivery Plan 2 (PDF, 117 KB)

Outcome 3: Carers can expect that they are listened to and have their opinions valued by professionals Delivery Plan 3 (PDF, 134 KB)

Outcome 4: Carers can expect opportunities for them to participate as active partners to the planning and shaping of carer services in their local areas including services for the people who are cared-for Delivery Plan 4 (PDF, 123 KB)

Outcome 5: Carers can expect more opportunities for carer peer support Delivery Plan 5 (PDF, 110 KB)

Outcome 6: Carers can expect improved provision of flexible and personalised support, to support emotional/physical wellbeing of carers and to enable them to have a life alongside caring Delivery Plan 6 (PDF, 144 KB)

Outcome 7: Young carers will have the best start in life and will be supported to achieve their potential, irrespective of their caring responsibilities Delivery Plan 7 (PDF, 137 KB)

 

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