Blog: It’s time for us to turn rights into reality for young carers and young adult carers

16th March 22

Andy McGowan, head of engagement at Caring Together, gives his thoughts on the experiences of young carers, why the Young Carers Alliance is so essential. Wednesday 16 March is Young Carers Action Day:

It’s Young Carers Action Day 2022, and this means we are approaching seven years since formal, legal rights for young carers and young adult carers came into force thanks to the Children and Families Act 2014 and Care Act 2014.

These two pieces of legislation introduced clear rights to assessments for young carers in their own right, in the form of Young Carers Needs Assessments and Young Adult Carer Transition Assessments. They also brought in the focus on reducing ‘inappropriate and excessive’ levels of caring, put duties on local authorities to take ‘reasonable steps’ to identify the extent to which there are young carers in their area in need of assessment and support, and made a clear commitment to the need for a ‘whole-family’ approach to supporting young carers.

At the time, these new rights were rightly described as “a fantastic thing” and a “step forward”. It should have been clear for local authorities as to what they needed to do for young carers and young adult carers. In turn, it should have made it easy for young carers, their families, and those who support them, to understand what rights they have and how to access those rights. Sadly, the evidence seems to suggest that for many young carers, this is still not the case.

Alarm bells should have been ringing in 2018 when The Children’s Society’s report (commissioned by the Department of Health and Social Care itself) highlighted the issue of young adult carers falling ‘through the gap between services’ and described the picture around transitions assessments as ‘fragmented and patchy’.

Yet four years on, there is evidence to suggest that, at best, what we have is a postcode lottery – where some local authorities have really clear pathways, meaningful assessments which lead to support, and widespread awareness-raising activity to improve early identification, but others quite simply do not.

At Caring Together, ahead of a recent meeting between young carers from Barnado’s, Caring Together and Young Carers National Voice members, and members of the House of Lords, we put together a snapshot survey to incorporate views of young carers not able to attend the session. 59 young carers from across the country wanted to feed in their views, and whilst it is a small sample size and the methodology was simple, the findings were stark. Only 53% reported having received a young carers assessment – more than a third of young carers ‘didn’t know’ if they had received an assessment or not – raising questions as to what difference it made for the young carers and their families if it happened at all.

This survey also showed how we still have so far to go in relation to early identification – on average, the young carers had been caring for 3 years before being linked into support and, unacceptably, there were young carers where it took 10 years to be identified. To put the three years in context – that would mean on average, for young carers being identified on Young Carers Action Day 2022 – they would have started taking on caring responsibilities before COVID-19 was something any of us had even heard about.

In relation to young adult carers, there is clearly even more to do – transitions assessments came onto the statute books at the exact same time as young carer needs assessments, yet many local authorities don’t currently appear to be providing young adult carers with their statutory rights (interestingly the same issue appears for parent carers and parent carer transitions assessments, but that’s another conversation for another day).

At Caring Together, we decided to undertake a ‘Mystery shopping’ exercise to see what the experience would be like for young adult carers and their families trying to access their statutory rights (assuming they know what those rights are).
Out of 19 local authorities where we looked for information on, or rang the local authority to specifically ask about, transitions assessments, only five had clear information or answers available. In a number of cases we were directed back to the local young carers service, and in others, we were either given information about young carers needs assessments or transitions for young people with SEND.
It’s not all ‘doom and gloom’ though – there were areas where the initial information was clear and easy to find (Brownie points to Cambridgeshire, Cumbria, Essex, Lincolnshire and Norfolk who were rated ‘good’ for information being available on this topic).

Aside from assessments, there has been lots of really positive focus on improving identification and support for young carers in schools, but noticeably less when it comes to further education, higher education and access to employment/training. Too often, the support for this group relies entirely on the work of the local carers support organisation – if we want all young adult carers to make successful transitions into adulthood, then it has to be on the radar on a much wider scale: from commissioners (both children’s and adults), to health organisations, to universities and employers and beyond.

Every week, I see countless examples of brilliant practice, whether that be from individual charities, individual local authorities, or individual schools/colleges/universities. Likewise, I see great work being done in different areas to champion the voice of young carers and ensure they are on the radar across education, health and social care and in the media/public/policy. And I’m proud that at Caring Together, we provide numerous opportunities for young carers and young adult carers to have their voices heard, and acted upon, on a local, regional and national level – whether that be through our own work in Cambridgeshire, Peterborough and Norfolk and accompanying media opportunities, or through linking up with the likes of Young Carers National Voice, NHS England and Improvement, Carers Trust, The Children’s Society, Barnardo’s, the Who Cares campaign, the Children’s Commissioner for England, individual universities and many more.

But for me, what is lacking is consistency, and what is needed, now more than ever – as we move into a world of ‘Living with Covid’, integrated care systems, and continued pressures on local authorities – is that strong, collective voice for young carers and young adult carers and those who support them.

This is where the Young Carers Alliance comes in – this network can bring together those working on the ground with young carers – whether that be for a local charity, or a local school. It can bring together those trying to improve support for young carers in their local area – whether as a commissioner within a local authority, or a discharge matron within a hospital; and it can bring together those helping us understand the latest issues facing young carers, young adult carers and their families – from those running young carer forums/councils, to surveys done by national organisations such as Carers Trust, to academics conducting research on young carers.

From speaking to many young carer organisations across the country, demand for their services shows no signs of waning, and they are busier than ever. So, the Young Carers Alliance can help us to avoid duplication and can help us to learn from where things have worked (or not worked) in other areas. This could be on practical issues such as consent forms, transport, or measuring outcomes; it could be on challenges such as ‘getting the foot in the door’ with schools, GP surgeries or adult services; or it could be focused on particular groups of young carers – such as siblings, ‘infant carers’ (those aged 5-8), or young carers supporting someone with mental health or substance misuse.

And this network can help us ensure that we are all ‘on the same page’ when it comes to the change needed for young carers – whether that be in relation to the Health and Care Bill, education, or investment in support for young carers and their families.

To this aim, the Alliance will be producing and championing a Bill of Rights and Responsibilities for young carers and young adult carers – setting out what we want to see for every young carer and young adult carer, and what responsibilities there are to make these rights a reality. It will build on things already in place – from the Care Act and Children and Families Act, to the United Nations Convention on the Rights of the Child, to the work being done to develop a Commonwealth Young Carers Charter.

Through my work on the Young Carers Alliance, I have been keen to make this new network as open and accessible as possible. I don’t want the fact that someone isn’t able to get involved in campaigning to be a barrier, I don’t want geographical boundaries, organisation type or funding sources to be a barrier, nor the lack of capacity to get involved with projects or meetings. For me, the only pre-requisite for joining this network of individuals and organisations is a commitment to improving the identification, assessment and support for young carers and young adult carers. By having a network of dozens of organisations, and hundreds of individuals, we can collectively turn these rights for young carers and young adult carers into reality.

For Young Carers Action Day 2022, I took part in an question time panel with two brilliant young carers, George and Ruby, and John Bangs (long-time supporter and campaigner for young carers) for Carers World Live, and there was a really interesting conversation about what we would class as ‘success’ in 12 months’ time when we reach Young Carers Action Day 2023 in terms of tangible achievements. For me, with the strength of this new network, I would really hope we are able to have achieved the following 4 things (and hopefully much more!):

  1. There will be a much clearer position as to the extent to which local authorities are meeting their statutory duties towards young carers under the Children and Families Act and Care Act.
  2. Young carers will have specifically been included within the Health and Care Bill (by then, an Act) to improve identification of young carers within health settings, particularly hospitals
  3. Work will be very much underway to include young carers within the schools census (a commitment made in December’s Adult Social Care Reform White Paper) and in turn, to ensure all schools have systems in place to identify their young carers.
  4. There will be a Bill of Rights and Responsibilities for Young Carers and Young Adult Carers in place setting out what we want to see for all young carers and young adult carers, and what needs to be in place for that to happen.

So if you’re reading this and not yet signed up to the Young Carers Alliance – why not come and join us, and help turn rights into reality for young carers, young adult carers and their families –

Have a great Young Carers Action Day!