The Needs of Highland’s Young Carers

This is the second of two blogs reporting on two workshops with Young Carers. We recommend you read the first blog  before this one, as it contains more details about the project, and the outcomes of the first workshop with young people attending the Edinburgh Young Carers Project .

In this blog, we report on the second workshop – with young people attending Connecting Young Carers (Highland) – and the main themes which surfaced from our discussion. We conclude with the additional needs and information specific to Young Carers across the two workshops which require to be incorporated into the Manifesto for Children and Young People’s Rights in Recovery.

#ScotYouthandCOVID3: Connecting Young Carers Workshop

Thursday 14th April, we spoke with 6 young people who attend Connecting Young Carers. Based in Dingwall, Connecting Young Carers offer care and support across the Highland region, with many groups online to take account of the varied geography and considerable rurality of some parts. We are incredibly grateful for the support in convening this online workshop, and to the young people for being so open and honest with us about their experiences.

The 6 participants were aged between 10 and 17, from a wide range of areas – from Inverness to remote parts of the Cairngorms National Park.

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:

1. What’s been good/easy
2. What’s been bad/hard
3. 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 were all agreed as good. 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.

Each story was different – one Young Consultant was simultaneously in state care at the start of lockdown, providing emotional support to a family member as a young carer, and had their own disabilities that require care. Another went from being a secondary carer – supporting their dad to support their mum – to a primary carer as their dad also became seriously ill at the start of lockdown. Meanwhile, one Young Consultant became a young carer during the pandemic as one of their parents caught COVID-19 and is now suffering from severe Long Covid. The Mural output below shows some of these complexities.

In the remainder of the blog, we discuss the main themes that surfaced from our discussion.

Not Everyone Could Manage Remote Schooling

Young Consultants talked about the difficulties of engaging with school, at all, with everything they had going on in the first lockdown. One Young Consultant had just become a young carer; another was caring for a sister with profound communication difficulties who couldn’t engage with remote schooling and needs to lip read. This made wearing masks in public also very difficult.

Not everyone had reliable internet, and even when they did, they didn’t feel they could get the support they needed at the time to learn effectively.

Person-centred Support is Essential to Wellbeing

One Young Consultant noted how they weren’t aware they’d been a young carer for the last two years until very recently, and getting this recognition and support has been vital to them. Other things that have helped Young Consultants’ wellbeing included when restrictions eased over both summers to give them more opportunities to get out and about, and getting the technology that has helped them to maintain social contact and begin remote schooling when required. It has been very difficult to make and sustain friendships as a young carer in a rural area across the pandemic, and the respite services offered by Connecting Young Carers were universally praised!

Young Consultants also talked about how school support is essential to them both surviving and thriving in education – when it’s there it’s great, but too often it isn’t. The solutions proposed align strongly with those devised by Edinburgh Young Carers and discussed in last week’s blog.

Living in Remote Areas is Very Hard During a Pandemic

Young Consultants talked about how tough it can be to get what you need in terms of support when living rurally. One Young Consultant shared how they had now lived in both a remote and accessible part of Highland, and how in the remote area they find they fall outwith catchment areas for much face-to-face support. Instead, they were given self-management tools.

Living in Highland also made it hard to access some of the services family members have needed during the pandemic, and groups such as Connecting Young Carers find it very difficult to coordinate travel for young carers to meet up in person very often. This can increase the sense of isolation some  feel, and one Young Consultant shared the difference that even just one understanding friendship can make to their wellbeing.

People with Disabilities Are Too Often Forgotten

Young Consultants were very clear that too many people are forgotten in both the restrictions that were put in place, and the lifting of them. A young carer looking after a sibling that needs to lipread struggled further with communication when masks were mandated and no face-to-face contact with friends allowed. They also talked about the challenge, and sometimes exhaustion, of having to continually think up activities to engage their disabled sibling during lockdown, on top of remote schooling and other caring duties.

At the same time, some Young Consultants felt strongly that people with disabilities and their needs are being brushed aside in this last phase of the pandemic, as all restrictions are removed. Many people are still at high risk if they catch COVID-19 and hospitals are struggling with high admissions. This includes children and young people with severe health problems, even though general society thinks children and young people only get mild illness.

One Young Consultant felt it absolutely abhorrent that people like them and their families may be considered ‘an acceptable loss’ by others in the name of ‘getting back to normal’. They felt collectively that the solution was to have a more significant dialogue about everyone’s needs and ambitions, rather than one groups’ needs automatically outweighing another’s.

Other very tricky issues arose such as the announcement in 2021 that Do not Ressuciate Orders would be placed on some disabled people if they were ill in hospital  – news that is incredibly troubling and difficult to process when you or a family member is disabled! Needing to move during the pandemic, with an ill mother, was also a massive struggle for one Young Consultant, and not something many people are around to support with.

Young Carers’ needs for Incorporation into the Manifesto for Recovery

The Young Carers from both groups – in Edinburgh and across Highland – discussed and echoed many issues that add weight to the Asks already devised by both our original Young Consultants and other groups we’ve spoken to. Particularly, these were the Asks related to improving education and remote schooling; addressing inequality; internet access; listening to children and young people more; improvements to healthcare, and to the importance of high-quality leadership in government.

In addition, the following information and needs specific to the Young Carers surfaced, which require to be incorporated into the Manifesto for Children and Young People’s Rights in Recovery:

1. We need more person-centred support for young carers and the people they care for.

This includes:

1. better training of teachers around our needs and how they should communicate with us first about what support we need;
2. helping other young people identify whether they are a young carer and how they can be supportive to people who are.
3. giving all Young Carers (no matter age and location) the choice to obtain a Young Carers card to help show needs to others. For example, this might have helped some young people collect medicines and do the shopping more easily during the pandemic.
4. providing access to funding and peer support, and opportunities ‘to be a young person’

Improving support includes always giving us choice about how information about our lives is used and shared with people, with the right to privacy honoured at all times. The financial and social implications of being a young carer should also be acknowledged, and more support given to help us access respite time and get what we and our families need to both survive and thrive.

2. Healthcare spending needs to be increased to support the needs of people who are disabled, isolated, or struggling with their mental health.

It’s vital that we don’t simply accept waiting lists as long as 18-months for children and young people to get help. Peer support groups, person-centred listening, and training in school on how to understand and articulate our own thoughts and needs, could also be part of an improved package of support.

The additional challenges and isolation associated with being a Young Carer in rural and remote areas is an important consideration. Fulfilling our role depends on better quality internet, public transport that specifically responds to the leisure needs of young people, and psychotherapy and counselling offered over the internet. We need to remember that the experience of children and young people in rural areas can be very different to those in urban areas, and policies such as the free bus passes are only of benefit if there is a functional bus service available!

3. The disruption to children and young people’s education during the pandemic needs to be accounted for, but not by increasing the amount of work we all have to do now.

We feel it fair that all young people impacted are given an extra free year of education to catch-up, so that our futures are not unduly impacted. This should also include greater flexibility around learning that supports young carers to meet the demands on their time at both home and at school. For example, pupils may be able to start later, pursue fewer qualifications at a time, and get more support to help them work out what they want from their futures.

It’s unfair and unjust for society to expect young people who manage an extraordinary and unpredictable extracurricular burden to keep up with the workload requirements of pupils who don’t. We worry constantly about burning out or getting left behind because we cannot keep up with, what is for us, unreasonable expectations. However, with an approach and pathways to qualifications and into work which is more adaptive to our situation, we are more than capable of academic success and contributing fully to society,

4. In this final stage of the pandemic, and in any future public health crises, we need more thought to be given to how restrictions affect people with communication difficulties, and how lifting restrictions affects people with severe health problems.

This is an extension to the Manifesto Asks from Long Covid Kids, around remembering that the pandemic isn’t over. A balance needs to be struck through honest and open dialogue with people most affected. It is not acceptable to consider some people as ‘an acceptable loss’, particularly when small relaxations or dispensations to some regulations, could make a transformative difference for the wellbeing of some Young Carers and those they look after.

What’s Next?

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.