Learning from Edinburgh Young Carers
In January 2022, we resumed workshops for STAGE 3 of APiC’s COVID-19 Project with Children and Young People. Supported by the Children and Young People’s Commissioner Scotland (CYPCS), #ScotYouthandCOVID3 has recalled the Young Consultants who participated in our original two stages of the project.
The study is a participant-led project involving teams from Aberdeen, Edinburgh, Glasgow, and (Rural) Stirlingshire and Falkirk, each with 4-6 boys and girls, aged 10-16 in the first round, and now ages 12-18.
We ended #ScotYouthandCOVID2 with a set of 34 Asks to Scottish Government to improve children and young people’s experiences now and in the future. Our Young Consultants also devised a strategy to create a Manifesto for Children and Young People’s Rights in Recovery that supports the needs of as many across Scotland as possible.
In this next stage, we are fulfilling the Young Consultants’ strategy from #ScotYouthandCOVID2. This includes holding more workshops with our original Young Consultants, primary school children, and other groups that have thus far not had enough opportunity to be heard in the pandemic.
The Experience of Young Carers
This is the first of two blogs where we report on workshops with Young Carers: young people who help to look after someone at home with a disability, illness, mental health condition or drug and alcohol problem. The support can be physical, practical, emotional or all of the above. As our healthcare system is not currently able to meet the full health and social care needs of everyone, a significant burden of care can be carried on the shoulders of our children and young people.
The demands on Young Carers entail a reactive, and sometimes unpredictable, workload and obligations. Some of our workshop participants were responsible for meeting the care needs of more than one family member. For the youngest, her first ever memory was of collecting tablets from the cupboard for her disabled father.
In this and the next blog, we discuss two workshops held with young people attending the Edinburgh Young Carers Project, and Connecting Young Carers (Highland), respectively. We set out the main themes arising from each, and in the second, the new needs and information specific to Young Carers which require incorporation into the Manifesto for Children and Young People’s Rights in Recovery.
#ScotYouthandCOVID3: Edinburgh Young Carers Workshop
Tuesday 12th April, we attended Edinburgh Young Carers Project, a voluntary organisation that provides respite and support to young people between the ages of 5 and 25 who care for somebody at home. We are incredibly grateful for their support in convening and co-facilitating the workshop, and providing a fantastic space for our discussions.
We spoke with 8 young carers (Young Consultants), between the ages of 10 and 15. We began the workshop with a task to fill us in on what life has been like across the last two years. This took the form of two timelines (sketched out below), one covering March 2020-21 and the other covering March 2021-22. Young Consultants were then invited to add in experiences based on:
- What’s been good/easy
- What’s been bad/hard
- Things I would change (or would have changed)
This task raised a wide range of insights and experiences. While not everyone agreed on all the good and bad things, experiences such as getting more sleep and having more time to themselves were all agreed as good, as well as the reduction in pollution and increase in local wildlife during the first lockdown.
Meanwhile, being both a young person and a young carer during all the uncertainty led to many worries the majority of young people do not have to experience. In the remainder of the blog, we discuss the main themes that surfaced from our discussion.
Young Carers Don’t Get the Recognition and Support They Need. The Pandemic Made it Worse
Understanding and recognising the role of Young Carers in our society is a vital step in ensuring they get the support required to thrive in life. The overarching theme and message from this workshop, however, is that there is limited support. In addition, many Young Consultants didn’t yet have a Young Carers card, which might help get other people to understand their needs.
Moreover, the pandemic had introduced new challenges over and above the typical caring duties of our Young Consultants. For example, for portions of the pandemic children and young people weren’t supposed to enter supermarkets and pharmacies, or weren’t technically old enough to collect important prescriptions. This was essential for many to meet the needs of family members who are unwell.
School
Remote schooling was exceptionally hard for Young Consultants to deal with. Several had also needed to support younger siblings in this, as well as themselves. The loss of routine and motivation to learn was a recurring theme, and like our Primary School Young Consultants [insert blog link], they noted that the sudden return to school was overwhelming. A slower transition would have helped!
When it came to support, all Young Consultants felt that the first year of the pandemic was characterised by a general lack of support. More recently this has been available in some form, but feels too little too late.
With regard their Young Carer status, the majority felt it continues to be poorly understood and respected by schools. It is general practice that young people have the right to write a Young Carers Statement for their school (and other institutions), explaining their story in their own words, but from their experience there are several issues around how these are used. Examples given were:
- Teachers showing no flexibility or offer of support in response to fluctuating demands on the Young Carer at home;
- Staff members disclosing private information about their situation to others without their knowledge or consent.
- Staff casually revealing their young carer status to classmates, by singling them out in front of other people
- Staff assuming what support a Young Carer requires, without first listening to and trying to understand their needs. One Young Consultant was signed up to a mentorship programme they knew nothing about, and would not have chosen for themselves.
Young Consultants felt strongly that their right to privacy must be respected when it comes to schools. In their view, the principal purpose of disseminating information about their status should be to ensure staff understand and accept their additional needs and support requirements on face value. Specific personal details are primarily on a “need to know” basis, at a level of disclosure permitted by the young person themselves.
Scotland’s Healthcare Isn’t Good Enough
Young Consultants talked about the difficulties supporting family members with their health during the pandemic. This included significant worries about them or others contracting COVID-19 or ending up in hospital for other reasons – at a time when hospitals were really struggling.
The strain on the NHS was a huge cause for concern, and they agreed that instead of clapping for the NHS, as was a custom at the start, government needed to simply fund it better! One Young Consultant spoke about not being able to see their father, who lived in a care home, before he died of COVID-19. Others spoke about delays to essential healthcare, which caused further strain on health conditions and overall stress levels in the home. You can see in the post-it below that they felt core changes were needed:
Mental Health and Wellbeing
In a more general sense, Young Consultants spoke about the impact of all the bad news on their sense of wellbeing. For some, lockdown brought around too much time to get lost in their own negative thoughts, without respite. There was a general sense of regret that they hadn’t found better ways to cope during the lockdowns:
Losing friends due to online communication was also another theme amongst younger Young Consultants. They noted that the emphasis on online-communication-only led to some misunderstandings, especially amongst girls, which had caused relationship issues that had endured into school and ‘offline’ life.
One Young Consultant noted that their caring disposition and listening skills often meant their friends turned to them with their problems. Having to deal with this on top of everything else could be exhausting and frustrating. This was particularly when they needed someone to talk to about their own struggles as a Young Carer. As one participant put it:
‘No one wins the game of who has the hardest life.’ Young Consultant, age 12
Through the struggles of the pandemic, all Young Consultants were clear that it had had a toll on their mental health and wellbeing. They agree and emphasise the need, already identified by our original Young Consultants, to improve access to Child and Adolescent Mental Health Services (CAHMS). They noted that being on a lengthy waiting list simply isn’t good enough when you need help right now.
Meanwhile, others emphasised that they need a range of other options aside from 1-1 professional support. They’ve found that peer support, changes to the school environment ‘to make it more bearable’, meditation, help with management of their routines, and getting quality respite is very important to promoting more positive wellbeing for them and others.
Similar to their needs around privacy at school, the Young Carers felt it was vitally important that the support centred on their individual needs. The choice should be theirs, and the options should be the result of someone genuinely listening and seeking to understand their specific circumstances. Underlying all, was the opportunity for these incredible young people, who give so much, to have time, space and resources for, and to be, themselves.
What’s Next?
Drop in next week to find out what happened with Connecting Young Carers (Highland), and to find out the new asks specific to young Carers which require incorporating into the Manifesto.
Regarding the project as a whole, we will be convening workshops with one more seldom heard groups over the next month, before reconvening with our original Young Consultants to discuss our findings. If you are interested in finding out more about this project, or getting on the mailing list to receive a link to our Scotland-wide survey later in the year, please get in touch with Dr Jenny Wood at jenny.wood@aplaceinchildhood.org.
We will be posting further updates on this project as we go, so follow us on Twitter for updates. We will also be writing a report at the end of the project, to chronicle our journey to the Children and Young People’s Manifesto for Rights in Recovery.
Read about wave one and wave two of #ScotYouthandCOVID here.
Find out about other APiC projects.