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.