What would it take for young adult carers in Lambeth to have a full life of their own while continuing with their caring role? 31 OCTOBER 2016
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Background A carer is “anyone who cares, unpaid, for a friend or family member who, due to illness, disability, mental health problems or addiction, cannot cope without their support.”1 Caring for a friend or a relative is linked to poorer health and wellbeing outcomes: carers are twice as likely to be in bad health than non-carers2, and 75% of carers find it hard to maintain relationships.3
“The care provided by friends and family members to ill, frail or disabled relatives is equivalent to £132 billion every year, considerably more than total spending on the NHS.”4 However, their experiences are far from reflecting that. Half of all carers in the UK feel that society does not think about them at all.5
Yet, informal carers represent a huge value to society.
1. Carers Trust 2. Census 2011 3. Carers UK (2014) State of Caring 2014
“Our vision is for families and carers in Lambeth to feel recognised, valued and included as equal partners in the support and care for the person they care for. Equally we want families and carers to have full, enjoyable and confident lives in their own right alongside their caring role.”6
4. Carers UK and the University of Leeds (2011) Valuing Carers 2011: Calculating the value of carers’ support 5. Carers UK (2014) Facts about Carers
6. Lambeth Family and Carers Strategy [draft 2015 – 2018]
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Carers in Lambeth: a snapshot
20,500 informal carers in Lambeth
Overall satisfaction with services has decreased by 13% since 2010
The percentage of carers saying they have as much social contact as they would like has dropped by 8% since 2010
More people reported finding it difficult to find information or advice
3,172 carers supporting people for over 50 hours or more (24% increase)
57% feel they do some of the things they value or enjoy but not enough
55% feel that they have some control over their daily life but not enough
10% increase since 2001
Personal Social Services: Survey of Adult Carers in England 2014 (published September 2015)
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National context National Carers Strategy (2014 to 2016)
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Carers will be able to have a life of their own alongside their caring role.
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Carers will be supported so that they are not forced into financial hardship by their caring role.
Carers will be respected as expert care partners at the heart of decision making and will have access to the integrated and personalised services they need to support them in their caring role.
Carers will be supported to stay mentally and physically well and will be treated with dignity.
The Children and Families Act (2014)
• The same right to assessment and support for young carers as adult carers who support a parent or sibling (sister or brother) • A general duty on local authorities to improve the wellbeing of young carers who are ordinary residents of the area • The identification of people who may be receiving care from a child or young person • Schools must have a process in place for the identification of young carers
5 Young carers will be supported to enjoy positive childhoods and to learn, develop and thrive and also protected from inappropriate caring roles.
• Schools must put in place a mechanism for the provision of appropriate support to promote the wellbeing and improve the educational attainment of young carers within their school
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About this project This project was commissioned by Lambeth CCG, in parallel to the development of the Carers Strategy. The aim is to co-produce better support for carers in Lambeth.
Focusing on practice This project does not aim to uncover opportunities for new services. Our underlying assumption is that real impact will only be achieved if we
focus on the transformation of frontline practice. Every interaction with informal carers, be it through a school teacher, a GP, a social worker or a Job Centre advisor, is potentially a missed opportunity to identify carers, signpost them to support, and to place them at the heart of the decisions regarding the care of the person they care for.
Young adult carers as pioneers Focusing on a specific cohort of carers will help us to demonstrate and exemplify the potential value of a coproductive approach to the wider system. We focused the project on young adult carers (16-25) for two reasons. First, they are
in a moment of transition into adulthood. This brings practical challenges as well as potential life changes. Second, it is often reported that there is a gap in provision for this age group. We see project participants as experts of care, and are involving young adult carers in every step of the project.
Project plan Understanding current experiences What does the life of young carers (16-25) in Lambeth currently look like? What are their aspirations? What are their challenges? How? In-depth interviews with 7 residents who have experience of caring as a young adult.
Imagining new practice How can young carers be better supported to be partners in the care of the person they care for and live a fulfilling life? How? Co-design workshops bringing young carers and professionals together.
Prototyping new practice How should the practice of health and social care professionals change to better support young carers? How? Prototyping workshops bringing young carers and professionals together to test some specific practice changes (e.g.: role playing new types of conversations, testing a new tools, etc..)
Sharing stories to build a movement Who needs to support this change and how? How? A celebration event built around a manifesto for supporting young adult carers in Lambeth.
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About young adults carers Young adult carers (16-25) are in a moment of transition into adulthood. This brings practical challenges (the support they are entitled to may change) as well as potential life changes (time to focus on their own futures).
• They often have to restrict their choices to low-paid employment that would enable them to combine their caring role with their desire or need to be employed.
The Lambeth Carers Strategy has identified that young adult carers face additional issues as a result of being in a transitional phase of their lives:
• Paid employment often not an option as their level of caring was in itself full time employment.
• They can experience extreme financial hardship. • Those who continue with education struggled with the additional pressure of having to care while continuing fulltime studies, and not being able to access part-time employment like their peers.
• Young adult carers may need training on management of long-term conditions, first aid, manual handling and practical life skills like cooking and budgeting.
• Some families have to make a choice between one sibling pursuing education or a career while another stayed at home to care.
• Young adult carers often develop valuable skills that are transferable in the employment market, but these are not recognised as there are limited means of evidencing them.
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Who did we talk to? We had in-depth conversations with 7 people who currently who had experience as a young adult carer. The conversations lasted up to half a day, and touched on their identity as a carers, their life stories, their day-to-day life, their aspirations, their challenges, their relationship with services, and more. A few of them have stayed involved in co-design workshops.
Rachel, 19
Charles, 16
Erika, 19
Charles lives with his mum and his little brother. He is a carer for his mum who has lupus. Charles is proud to have succeeded with his GCSEs. He has just started Sixth Form, and wants to become a lawyer.
Erika has been caring for her grandmother since she was little. She now goes to University outside of London and comes back to live with her aunt and her grandma during the holidays. She was estranged by her parents and does not see them.
Rachel cares for her mum who has a lot of different health issues. She also looks after her sister, who has learning difficulties. Caring has become more intense since her older brother left the home. She is currently doing a tailoring degree at London College of Fashion. She wants to work as a costume designer.
Carmen, 19
Sharon, 22
Nuria, 37
Linda, 47
Carmen is an only child, and has been a carer since she was 7. She used to care for her mum, who has now passed away, and for her dad. She now lives with her grandmother, who has dementia. She is currently doing an apprenticeship at Kings College Hospital.
Sharon cares for her mum. She lives alone in her own flat, but visits her mum daily and sometimes stays overnight. Sharon missed school a lot when she was younger, and now struggles to see what she could do as a job, apart from caring.
Nuria started caring for her little brother, Andres, since she was 13 years old. Andres is 30, and contracted Malaria as a baby, on a family trip to Angola. He has been disabled since. Nuria has 4 children of her own. The family moved from Portugal to London a few years ago, and Nuria is currently looking for a job, preferably in childcare, but struggles with her English.
Linda started caring for her mum, who has mental health issues, when she was 5, after her older siblings left the house. As a young adult, she struggled with drugs and alcohol as well as domestic violence. She now works for a local charity.
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Who did we talk to?
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women
man
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are currently in further education
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1 2 4
cares for a brother
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for their grandmother
care for another family member as well (not necessarily full time)
do not receive carers allowance
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access other funds (education grant)
for their mum
started caring before 10
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spoke about experiencing mental health difficulties
were bullied in school
have a job
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1.Insights
Key findings emerging from our conversations with young adult carers around the following themes: Daily life Health & Wellbeing Being supported Identifying as a carer Realising dreams and ambitions
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THEME 1
Daily life 10
A quarter of all young adult carers in the UK are providing care for more than 20 hours per week and about half of these are providing care for more than 50 hours each week.
27% of young carers (aged 11–15) miss school or experience educational difficulties.
All statistics in this section have published by the Carers Trust
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Challenge
Juggling school or work with home life “I had to juggle secondary school with home life. I had a few breakdowns, especially during exams. I did most of my work during the night, only a few hours, 3-4 hours sleep a night...� Rachel
Being a carer often means that the first thing you do in the morning and the last thing you do at night is for someone else. All but one of the carers we spoke to live with the person they are caring for. They also are the main carer. Often, this responsibility translates in a long list of tasks, including preparing meals, helping the person wash themselves, cleaning the house, doing the shopping, looking after medication, accompanying the person to appointments, taking care of younger siblings. This means that juggling school and personal life with home life was often difficult.
Being a carer doesn’t stop when you leave the home. Rachel, who is currently at university, told us that she regularly checks in with her mum via text. If everything is OK at home, she tries to stay at university in the evening until it closes. Otherwise she struggles to separate her university work and her home life. This is the only way she could stay focused on her studies. This often means long days and little sleep, as she still has caring responsibilities when she gets home late in the evenings.
Sharon for example, told us that she used to miss school a lot. She said that if she could give her younger self advice, it would be to go to school more. 12
Challenge
Less time for being a young person Young carers often appear more mature than people their age. They often miss out on the opportunity to just be a kid. Rachel compared herself with other students at university, who go socialise in the pub most evenings. She is perplexed about it and, because time is so precious for her, she sees it as a waste of time. Erica also said that she found it difficult to socialise with the other students at university. While she isn’t shy, she feels she feels she never really learnt to socialise due to her caring responsibilities restricting her time to be with other young people.
Linda, who is now 47, reflected that as a child, she matured a lot quicker than her peers. She realised this at the time – she noticed that she carried a lot more, and worried about things that they didn’t have to worry about. She mentions that she didn’t really have friends at school, because people didn’t understand her home situation. She always felt like an outsider. At home, from a very young age, she was expected to spend time with her mum, who suffered from mental health issues. She couldn’t invite friends over or play, as the house always had to be quiet.
“It’s only once in a blue moon that she’s well. Sometimes she then cooks, goes out in the garden, play a board game.” Rachel
My dad would tell me “Go and sit with your mum, your mum’s not well, go make sure she is alright, go, go...” Linda
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Opportunities
Strategies for managing commitments One of the biggest challenges for the carers we spoke to has been to be able to ask for help and be open about their challenges. The Carers Trust estimates that only half of young carers have a particular person in school who recognises that they are a carer and helps them. While in secondary school, she had not told anyone because she didn’t see the point in it, Rachel decided to speak to her university tutors to make sure they understood her responsibilities outside of her studies.
Similarly, Carmen has talked about it to her employer, and feels that her disclosure was met with understanding. However, this was not the case for everyone. One young person talked about being fired from her part-time job after opening up about her caring responsibilities and asking for a certain amount of flexibility.
“Tutors understand. I told them about this before I got onto the course. If anything happens to my mum, that is my priority, I would leave the class. I had to tell them.� Rachel
Not all schools or workplaces will have the right level empathy, and there is a clear opportunity to raise awareness about what it means to be a carer.
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Opportunity
Caring for a relative is an emotional commitment, not just a list of practical tasks. Finally, it is easy to assume that being a carer is just about having a lot of things to do for the other person. However, carers often spoke about the emotional aspects of caring: worrying about the person they care for, reassuring them if they are feeling low, etc.
Linda started caring at very young age, and started with emotional support rather than practical support. At the time her older sister was still living at home and was doing a lot of practical house work. Because she was the younger one, it was “the only thing I could do”.
Rachel and her mum are very close. They often talk during dialysis, and they would ask each other advice. However, she doesn’t really talk to her mum about her own stress and anxiety about caring for her, as she is worried that it would upset her mum.
She remembers being scared and intimidated by her mum when she was younger. When her sister left the house, she took over all the practical tasks as well.
“I consider us very close. During night time and dialysis we talk a lot. I’m like her therapist.” Rachel
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THEME 2
Health & wellbeing 16
68% of young carers experience bullying in school.
45% of young adult carers report that they have mental health problems.
All statistics in this section have published by the Carers Trust
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Challenge
Challenge
No time to look after yourself
Your mind is always somewhere else
Caring is a demanding commitment, and often the carer places themselves second. Nuria, for example, cares for her younger brother, and has four children of her own. She always puts them before her, and she often forgets to look after herself. She says she would like to be healthier. She sometimes forgets to eat during the day, or skips meals because she sometimes get allergic reactions. She attended a few Carers4Carers sessions, where she got pampered and massaged, but these happened around a time when she was very stressed about their housing situation, so they struggled to engage and stopped going.
This was a common story. People talked about having to skip school trips or after school activities, having to stop going to dance classes, not having the money for swimming pool memberships, sacrificing precious hours of sleep, and generally not being able to prioritise their own health.
“Sometimes I feel I don’t have time for myself. I focus on him, and I forget to eat…”
Carers also find it hard to focus on the here and now. Rachel talked about a period when her mum would be regularly rushed to the hospital. She would go to school, but found it hard to concentrate. Her mind would still be with her mum.
“It was very hard, when she got rushed into hospital, I would still go to school, but my mind would be with her.” Rachel
“When I’m not with him, my head is there (at home).” Nuria
Nuria
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Challenge
Distress, anxiety and depression, anger As a result of a stressful schedule, worrying about the person they care for, being isolated, and not being able to prioritise their own wellbeing, carers often encounter some difficulties with their mental health. Sharon, for example, suffers from depression and anxiety. She says that her caring responsibilities make her depression worse, because she is constantly worrying about what might happen to her mum. She takes medication, but this also makes her tired, on top of the tiredness from her duties as a carer.
Everyone we spoke to mentioned they are currently struggling, or have struggled in the past with anxiety or depression, not always diagnosed. For some, their distress was sometimes expressed through acting out at school, or, in one person’s case, through self-medicating with drugs and alcohol. In addition, many have experienced other traumas: parental separation, grieving for friends or relatives who have passed away, being abandoned like Charles, estranged by family, like Erika, or having a difficult relationship with their father, like Carmen or Rachel.
A few of the young adults we talked to had been referred to counselling or CBT. They tended to find it more useful when it was practical and offered actionable strategies, like CBT, than when it was just about talking about their feelings.
“I was really distressed and depressed when I was younger, I couldn’t cope. I was worried about my mum. I didn’t know what to do anymore I wasn’t in a very good place, that’s why.” Sharon
Charles talked about having found a way of managing his anger through a conversation with an evangelist in Ghana. When he feels the emotions bubbling up, he runs to the nearest sink, drinks a glass of water, and keeps the water in his mouth until his anger has come down again.
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Challenge
Stigma and bullying Another thing that impacts on the wellbeing of carers, and young carers especially is their experience of stigma. Linda said that she had a hard time growing up and at school. She was reliant on other mothers to pick her up for school, and the other children didn’t always know why, but picked up that she was different. People didn’t realise what her home situation was like and what it entailed to be a carer. This made things hard for her as people labelled her and her mum “mad”. She also got pulled out of classes which made matters worse.
Most of the young adults carers we spoke to also mentioned some degree of bullying. For Rachel, a way of dealing with it in primary school was to simply skip school. Carmen mentioned the “fake friends” who turned their backs on her because she did not have time to hang out with them. Others mentioned finding it hard to connect with other children, because there was no way of them understanding what being a carer meant.
“Someone mentioned my dad, and I got really upset, they said my mum has HIV. I got a fire hydrant, wanted to smash the person’s face…” Charles
“At school I just came across as vulnerable, was constantly picked on.”
“In high school the school arranged counselling, but then I got picked on for that. I got pulled out of lessons. Rumours started that I was mad, it was highly embarrassing. That was just awful.” Linda
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Opportunity
Turning vulnerabilities into strengths Despite all the challenges already mentioned, young adult carers, as they get older, become more aware of the skills and assets they have developed in their caring role. They describe themselves as more mature and more driven, and are, to some extent, proud of their caring role. Though this has often required someone else to recognise that. For example, Carmen, who is currently doing an apprenticeship in a hospital, didn’t know what she could do with her life for a long time. It is only when a nurse who helped with her mum once complimented her on her care that she realised she could put her skills to good use.
For Charles, who is 16, getting a mentor through the school helped him to find more balance and confidence. He says: “I’m more enlightened now, I’ve got insight. I’ll see the negative and positive, I choose the best way forward and do it. Establish the facts, eliminate the negatives. Take a step back and look at it.” He is also really articulate about what he has learned through caring. For a long time, he wanted to become a doctor, to find a way to help his mum. However, now he has reflected that he wants to be a lawyer, because he has the empathy he thinks lawyers need to be able to fight for their client.
“My mentor taught me to be proud of who I am, to be a proper man, not to let things get me down, to think and use my disadvantages as an advantage.” Charles
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THEME 3
Being supported 22
17% of carers who had taken a break of more than a few hours experienced mental ill-health compared to 36% of carers who did not have such a break since beginning their caring role.
Many services are only funded up to the age of 18. 79% of young carers said they were worried about moving on as they felt there was no support after 18.
All statistics in this section have published by the Carers Trust
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Opportunity
Taking breaks The young adults we talked to highly valued the opportunity to have breaks when they were younger. Some used to attend young carers groups and have the opportunity to just play for an afternoon, or to go on trips. Trips out of London, and the opportunity to be physically away from their worries was the most valued.
Carmen talks about the first time she visited Saint-Lucia, where her grandmother is from. She was 13 at the time, and was caring for both her mother, who had cancer, and her dad, who has alcohol issues. She was there for 2 weeks and feels that this was the happiest time in her life.
“For the first time, I felt free.� Carmen
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Challenge
Connecting with other carers Being a carer can be an isolating experience, even for those who have close friends or a wide family network. Most feel that others don’t really understand what it means to be a carer. They also feel that making them understand would not be just a matter of explaining it. They would have to actually step into their shoes for a day, and experience what it feels like.
“Other people can try to understand, but until they spend a day actually having to go through what we go through, they won’t really understand.” “I wish other young carers knew that it’s OK to talk about their struggles. A listening ear that has a similar experience is a breath of fresh air!” Carmen
This is why they valued connecting with other young carers, not necessarily to talk about caring, but simply to bond with other people who would understand and accept them.
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Challenge
Not feeling heard For carers, the needs of the person they care for come first. This is often reflected by the attitudes of professionals. GPs or social workers often neglect to ask how the carer is doing. During GP appointments, this is emphasised by how little time there is to cover everything. One young adult carer mentioned she resorted to writing down everything she felt was wrong with her on a piece of paper before her appointment, and handing out to the GP to save time. This got her a referral to CBT. However, most of the carers we spoke to found it hard to speak about their own needs. Some talked about feeling guilty if the focus was on them.
Sometimes, the solution could be as simple as the professional making time to see the carer separately form their family. For example, Linda talked about not being able to express herself during meetings with the social worker, as she didn’t dare to speak about her own frustrations in front of her parents.
“I wish the GP knew that it’s not only the person I’m caring for who needs help.” Carmen
“I remember I never really felt heard in the meetings. Never saw a social worker alone, always with mum and dad, couldn’t say what I really felt, so I never really had a voice to say how upset I was or how horrible it was with her violent outbursts. It never went anywhere.” Linda
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Challenge
Lack of family support “Tying a piece of string without your thumbs, that’s what it feels like without my dad.” Charles
Changes in family structures can put a lot of extra strain and responsibility on carers. Often, the parents are separated, or an older sibling has left the home. Sharon tells us that her family, including her siblings and their children, used to get together at her grandparent’s house for family gathering. Her grandfather was very important to her. The family gatherings also offered valuable family time and support, and also a way for her mother to get out more on a regular basis. However, her
grandfather passed away and these gatherings ceased. She now feels alone in her caring role she says it’s now “just me and my mum really”. Linda told us that her older sister wanted to get out of the house as soon as possible. She married and moved out as soon as she was old enough. This left Linda who was a young teenager with all the caring responsibilities for their mum. She remembers that she was angry, as she felt she was being “dumped” by her older sister. Rachel also told us that she took over being her mum’s main carer when her older brother moved out of the house to go to university in a different city. Her younger sister helps where she can, but now Rachel takes on most of the responsibility.
Carmen feels resentful against her extended family. Since her mum passed away, it’s now just her and her grandmother. Even though her grandmother has 6 children who are Carmen’s aunts and uncles, Carmen who is only 19, takes all the responsibility of looking after her grandmother, who has dementia.
A few years ago, Carmen won a Young Carers Award. She feels really proud of it, and looks back at it with a sense of achievement. She is proud that she finally got the recognition she deserves. She contrasted this feeling with the frustration she feels when her family talk about her being a “good girl” without offering practical support.
“I wish my family knew the pressure that caring entails, instead of just saying ‘you’re such a good girl.’” Carmen
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Challenge
Feeling other people might not know the person’s needs as well as they do Even though they would like more support, carers can find it hard to trust others to do a good enough job. A few have had experiences with professional carers. They, or the person they care for found it difficult to build a trusting relationship with the professional carer. Others, simply found it disruptive to have a stranger in the home.
Sometimes, this mistrust extended to friends and family. Erica lives with her aunt and grandmother, and cares for her grandmother. Erica recently went to university in a different city, and now mostly comes back home during holidays. Her aunt and a professional carer now provides support for her grandmother while she is away. However, when she is back, she notices that her aunt is not always providing adequate support – she gives the example of there being no vegetables in the fridge when she came back, or a medical aid that had broken while she was away but had not been fixed.
“When he was born, I felt that Andres was my son. My mum had Andres, and left him to me. When I was 13, I took Andres everywhere. I sometimes don’t even trust my mum with Andres.” Nuria
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THEME 4
Identifying as a carer 29
Only half of young carers have a particular person in school who recognises that they are a carer and helps them.
35% of carers miss out on state benefits because they don’t realise they can claim them.
All statistics in this section have published by the Carers Trust
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Challenge
Starting young, caring feels normal Over half of the carers we met started caring when they were under the age of 10. You don’t suddenly become a carer. Often, their caring role increased gradually. The might have taken on more responsibility as they grew older, or as the condition of the person being cared for deteriorated. Sometimes, their responsibility also increased due to their parents separating, or an older sibling moving away from home.
For most, it took a few years before realising that they were doing more at home than other children their age. Often, the catalyst to realising they were a carer was a conversation with a school teacher, or another trusted adult who could then refer them to a young carers project.
“Have I always seen myself as a carer? Not when I was younger. I thought that I was helping my mum. I didn’t understand properly about what was wrong. AS I got older, I realised what was going on. When I was in school, in that group, I realised I was a carer.” Sharon
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Challenge
Choice but no choice Carers experience their caring roles differently. For some, it’s a burden. For others, it’s a way of expressing their love for the person they care for. Some are proud of their caring role. But most have ambivalent and sometimes conflicting feelings about it.
Rachel, for example, talks about writing poems when she was younger to express how she felt trapped by her responsibilities. At the same time, she is quick to correct that, even though she feels trapped, caring is also a labour of love. Neither her mum nor her chose the situation, and
“I don’t let her know my feelings for caring for her, because it would upset her. She only knew how I felt when I wrote poems. She said the poems are very good, but I feel like she felt hurt or asking too much from me. I told her it’s not her fault, she didn’t choose to be sick. I don’t mind doing it.” Rachel
On the one hand, they want to see it as a conscious decision: they did it because the person being cared for is their mum, or their dad, or their grandmother. They love them, and it feels normal to be there for them. At the same time, it doesn’t feel like there is any other choice.
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Challenge
Feeling like caring is a way of being Young carers often have responsibility for more than the person they officially care for. Rachel carer for her mum, but also helps her younger sister out with homework. Carmen cared for her mum from as young as 7 years old until 13, when her mum passed away from cancer. When her parents separated, her grandmother moved in the help with caring with Carmen’s mum. However, she has now developed dementia, so Carmen has taken on looking after her grandmother as well. In addition, her father has an alcohol addiction, and has been
in hospital because of it. She remembers a time when both her parents were hospitalised. “The hospital was like my home!” Finally, she is the oldest of all her nieces and nephews. She talks about her aunties and uncles bringing their children “to visit grandma” and leaving it to her to look after them, because she is seen as the responsible one. Similarly, Charles, explained that while he cares for his mum, he also helps his little brother around the house and to get ready for school. Though he did not view this as ‘caring’, it was adding to his responsibilities.
Some young adult carers talked about how identifying as a carer is not the problem. In fact, realising that you can be more than just a carer can be a challenge too.
“It’s a bit hard, there’s nothing for me to do much anyway other than caring. I don’t have a dream job. Maybe I could do caring for other people?” Sharon
Sharon, who missed school a lot, finds it hard to imagine how she would occupy her time if her mother passed away or no longer required care. She doesn’t work or study, and when asked what her dream job would be, she hesitates before suggesting that applying her caring skills in a professional context feels like the only option.
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THEME 5
Realising dreams & ambitions 34
Young adult carers aged between 16 and 18 years are twice as likely to be not in education, employment, or training.
56% of young adult carers in college or university were struggling because of their caring role. 17% said they may have to drop out. One in five carers gives up employment to care. All statistics in this section have published by the Carers Trust
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Opportunity
Drive and maturity National statistics suggest that young carers achieve less than non-carers. However, the majority of the young adults we met were driven, creative and ambitious. Rachel is enrolled in her second year of a tailoring degree at the University of Arts London, and has completed two work placements with costume designers. Carmen is an apprentice at Kings College Hospital. Erika goes to University and studies law.
Charles first wanted to be a doctor to cure my mum’s illness. Then he thought he should be an activist, to help people but decided it wasn’t worth it. “I thought I won’t be able to make a real impact.” So he now wants to become a lawyer, to “fight for people.” He says his ambition is both driven by his experience as a carer, but also by wanting to prove wrong the teachers and classmates who doubted him.
“Caring prepares you for life… everything isn’t just happy moments. It builds up your individuality.” Rachel
“And the doubters, I want to prove them wrong. Everyone who thought he’s not going to make it… that’s when I want to prove them wrong.“ “My role model is myself in the future. It’s the guy I see myself being in the future and the impact he makes in the society Around him. “ Charles
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“I’m really sensitive, and I have a lot of empathy. Because I’m a carer, I will sit down for hours and listen to what you have to tell me, and I won’t miss a single detail. If you’re a lawyer and you’re not empathetic, you can’t fight for the client. You have to know the person and what they’ve been through. To be a good carer, you need a lot of love. A lot of patience. You need to be determined. You need to know where you want to be, and what the person you’re caring for needs, and never ever lose faith in the person you’re caring for. Never throw in the towel.” Charles
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2.Opportunities Ideas and opportunities developed with young carers and professionals around the following themes: School Professional carers GP Family Time for me
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Schools Challenges faced by young carers at school include: Relationship with other students • Not being understood by other pupils. • Struggling to build or maintain friendships because of commitments at home. • Being bullied by other students because “you just stand out.”
“What if we used school assemblies to raise awareness about young carers?”
What difference would that make?
What difference would that make?
School assemblies so have impact on students, especially if they are on subjects that touch them directly, like sex education for example. Why not use this opportunity to:
Schools already have awards for other achievements, like maths, sports, music, etc. Why not have the same for young carers? This would help to:
• raise awareness in other students about what it means to be a young carer, and encourage students to support each other
• raise the self-esteem of young carers, through positive recognition of their commitment
• reduce bullying, as a result of increased awareness
• raise awareness in other students about what it means to be a young carer: it is not just about being vulnerable, it is about being strong
• encourage more young carers to step forward and identify themselves and ask for support
• potentially reduce bullying, as a result of increased awareness
How can we test this + with who?
• potentially encourage more young carers to step forward and identify themselves
Academic achievement • Not being able to focus on lessons or homework because you worry about the person you care for • Teachers not understanding why you might be late, struggle to focus in class, or find the time to do your homework
“What if there was a campaign in Lambeth schools that celebrated young carers as heroes?”
Short-term. Organise a one-off School Assembly in one of Lambeth primary or secondary schools. Measure students awareness of young carers before and after. • Local schools and Carers Hub
How can we test this + with who? Long-term. Set-up a Lambeth-wide call for participation. • School liaison in Lambeth Council • Carers Trust & Children’s Society
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I was a young carer. You are not alone.
How would it work?
“What if we used school assemblies to raise awareness about young carers?” Presentation about what is a young carer, how many there are in Lambeth, and what their challenges might be. The main message is “if you are a young carer, you are not alone.”
Testimonial by an older young carer (who is not attending the school) about their own story. What if it was a famous person who used to be a young carer?
Hand out leaflets to all pupils about where they can get help if they are a young carer, and how to support their friend if they are a young carer.
Presenters stay in the school all day, and are available if anyone wants to speak to them or ask questions.
If I was a young carer...
Play a role play game, where pupils and teachers all take part. The game sets challenge faced by a young carer, and invites each player to propose a solution to the challenge.
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How would it work?
“What if there was a campaign in Lambeth schools that celebrated young carers as heroes?�
Use School Assemblies (year groups) to launch the campaign, explaining what a young carer is.
Posters in the school invite every teacher or pupil to either nominate themselves or to nominate someone who they know is a young carer (with their permission).
Have a celebration awards, making sure that everyone who has been nominated is celebrated, not just the person who won the award.
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Lambeth schools supporting young adult carers pledge
As a school, we will • Be more aware of our students’ needs • Talk to them to understand what’s going on at home and what we can do to make it easier for them to focus • Use PSHE classes and School Assemblies to raise awareness about what it means to be a carer • Make sure we identify young carers and let all teachers know • Celebrate carers (pupils and staff, for example during Carers Week)
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Professional carers
“What if professional carers spent more time with young carers to better understand how to care for the person they care for?”
Challenges faced by young carers in relation to professional carers: Trust • Young carers can understandably be quite protective of the person they care for, and can find it hard to trust strangers to do a good job. Sometimes, this is due to bad experiences with professional carers in the past. • Some young carers feel that “professional carers don’t care.” • Professional carers can easily dismiss the advice given by the young carer, as they are the “professional” and assume they know best. • The person being cared for can find it hard to express their preferences.
Consistency • Inconsistency of professional carers if they come from agencies especially. They come and go, and there is no time to build a relationship.
What difference would that make?
How can we test this + with who?
Families who are eligible for support from professional carers as well as those who pay for professional carers would get the opportunity to choose the right person and conduct an induction with them. This would:
Short-term. Test the interview and induction process with one family. Design a chalkboard communication tool for the young carer and professional carer to keep each other updated.
• provide some relief to the young carer • reassure the young carer and the person they care for by giving them more control about how they are supported • support professional carers to do a better job in the limited amount of time they have
Long-term. Test whether this is possible to implement through personal budgets. Understand what it would take for agency carers to implement this into their work routine.
• Lambeth Council social care team • Help for Carers professional carers team
• enable the person being cared for to express their preferences: “it might be just about using the red cup instead of the blue cup!” • enable better and clearer communication, and give the young carer some authority
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How would it work?
“What if professional carers spent more time with young carers to better understand how to care for the person they care for?”
The professional carer comes into the home for an induction, during which the young carer runs through: daily schedule, where things are in the house, medication, preferences, etc.
I would like the support of a professional carer.
Young carer contacts social care team or directly contacts an agency to arrange a professional carer and gives basic details about their and the person’s needs.
The agency responds with a choice of 3 professional carers. The young carer interviews them on the phone and chooses the most suitable one.
The young carer prepares a checklist for the professional carer. At every subsequent visit, the professional carer updates the list. This needs to be visible, visual, and quick to do.
If the professional carer is unavailable and a new carer comes in, the checklist enables them to quickly understand what needs to be done.
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Professional carers supporting young adult carers pledge
As professional carers, we will • Trust and Respect the expertise and opinion of carers when making decisions about a person’s care • Take some time to get to know the patient and their family, including their preferences • Understand that small things, like which cup we use to serve tea, might mean a lot for the person we care for • Communicate with the young carer so they know what we have done and not done • Listen and respond to feedback
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GP Challenges faced by young carers with their GP practice “Caring staff don’t care” • Feeling that doctors don’t have enough time for the person they care for, let alone the young carer • Hard to ask for help
Academic achievement • Not being able to focus on lessons or homework because you worry about the person you care for • Teachers not understanding why you might be late, struggle to focus in class, or find the time to do your homework
“What if all staff in a GP practice knew when a patient is also a carer and was able to signpost them to support?”
“What if doctors, nurses and pharmacists consistently asked carers how they themselves are doing at every appointment?”
What difference would that make?
What difference would that make?
Each GP practice is required to keep a carers registrar, but neither GPs nor carers seem to see it as a useful too that actually makes a difference. Enabling GP practices to, not just identify carers, but also signpost them to the Carers Hub or other forms of support would:
At the moment young adult carers don’t feel able to ask for help. The focus is on the person they care for, and the challenges carers face with their own physical or mental health might go unnoticed. Consistently asking the person accompanying their patient how they themselves are doing would only take a minute., and would:
• ensure carers don’t feel left out and are able to prioritise their own health and wellbeing as well
How can we test this + with who? Long-term. Test a way for GPs to identify carers with 3 simple questions, and an easy directory of support services for carers. • GP practices • Patient Participation Groups
• ensure carers don’t feel left out and are able to prioritise their own health and wellbeing as well • potentially encourage carers to book double appointments, so they are able to talk about their own challenges
How can we test this + with who? Short-term. Test a way for GPs to keep track of carers own health and wellbeing. • GP practices • Patient Participation Groups
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Lambeth GPs supporting young adult carers pledge
As a GP practice, we will • Listen and be more alert to the needs of patients and their families • Recognise when a patient and their carer needs more time and offer double-appointments • Offer referrals to services for carers, informal groups, and other activities (social prescribing) that might support a young carer’s wellbeing • Make sure all carers are registered • Offer routine checks for all carers • Respect the expertise and opinion of carers when making decisions about a person’s care 47
Family Challenges faced by young carers with their family include: Lack of support
“What if there was a tool to support young carers to coordinate family members?”
What difference would that make? Young carers could benefit from a tool that enables them to plan, schedule and delegate tasks to other family members. This would:
• Other family members sometimes struggle to understand how much the young person does. As a result, they neglect to offer help.
• help family members to empathise with how much young carers actually do
• Young carers also find it hard to ask for help, because they feel it’s their duty, or because they might have asked in the past and received negative answers.
• help families to communicate clearly and in non-threatening ways
Family tensions
Short-term. Test an inexpensive version of the tool with one family. This could be a chalkboard, or using free online tools like a Facebook group, a Whats App group, Trello.
• When other family members chip in, there are sometimes tensions over who is doing a better job, or who is doing more than the others.
• support young carers to ask for help
How can we test this + with who?
• A young adult carers’ family
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Carers Hub
“What if we organised a young Carers Festival and fun trip for all young carers in Lambeth?”
“What if, as soon as they turn 16, young carers were offered Transition Support?”
What difference would that make?
What difference would that make?
The young adult carers we spoke to referred to some of the young carers groups and trips they had been to as really valuable for two reasons: they offered a break away from everyday challenges, and they were an opportunity to bond with people sharing similar challenges.
At the moment, there is no dedicated support for young adults. Inviting them to a conversation around their 16th birthday about what will change, what their options are, and how they are going to manage their new commitments alongside being a carer would: • make sure they don’t feel let down
• Young carers also find it hard to ask for help, because they feel it’s their duty, or because they might have asked in the past and received negative answers.
They came up with the idea of a Carers Festival, a fun trip away for Lambeth Young Carers, which would include activities around self-care, wellbeing, and practical information about being a carers?
Lack of support after 16
How can we test this + with who?
• When they turn 16, young adult carers can feel let down, as they are no longer eligible for the young carers group
Long-term. Organise a Carers Day Away, inviting local charities to come along and deliver workshops and activities.
• At the same time, their circumstances might change, as well as the support they are entitled to, but it can be overwhelming to plan for these changes
• Carers Hub and other charities.
Challenges faced by young carers with their family include: Lack of time for me • Young adult carers feel pulled in every direction, and find it hard to make time for themselves to simply relax and have fun.
• make sure they are aware of all the support they are entitled to (benefits, professional carers, respite, etc...) • help them plan for the future • make sure they have a list of other support options after the young carers group
How can we test this + with who? Short-term. Develop the content of a Transitions conversation with young carers. Long-term. Develop a Transitions project located at the Carers Hub. • Carers Hub
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If you have any questions about this project, or want to help to take these ideas forward, contact Fan Sissoko, Senior Service Designer fan.sissoko@innovationunit.org 07810288879
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