This is an article I wrote for Carers UK and Special Needs Jungle about parent carer identity, what it means to me and how I feel about our place in society. If it touches you I’d love to hear your thoughts.
Although I, like many of you, seem to spend every waking moment thinking about my son – which doesn’t always leave a lot of time for personal reflection – I’ve also been thinking about my role as a parent carer: my rights, my limited options and my uncertain future.
I’ve also been considering how others in society view my role – family, friends, professionals, social care and the government. Last year, I found myself on a focus group for Carers UK and the We Care Campaign talking about specifics such as carers assessments, transitions for carers, carers’ leave etc. I realised I had a lot to say! It was a bit like opening a dam, and lots of half-formed yet urgent thoughts, feelings and words tumbled out. I’d asked some local parents for their feedback, and some of them weren’t even sure they were parent carers, despite carrying out the role every day of their lives. Weren’t they just parents, after all? Most of all, it was being faced with discussions surrounding the massive inequalities and injustices that parent carers face on a daily basis which made me unexpectedly boil with frustration.
Now, I should point out that I feel no resentment towards my son for my role. Not one iota. But I definitely feel resentment towards the fact that me – and millions of others like me – find ourselves literally trapped both physically and financially by our parent caring role, with little or no help from local authorities or the UK government.
According to Carers UK: ‘Unpaid carers in England and Wales contribute a staggering £445 million to the economy every day – that’s £162 billion per year (Petrillo and Bennett, 2023). The value of unpaid care is equivalent to a second NHS in England and Wales, which in 2020/21 received an estimated £164 billion in funding (Petrillo and Bennett, 2023).’
So, in our roles as unpaid parent carers, it’s very clear that we contribute to saving the country millions and millions of pounds by caring for our children at home. Many of our young people are not able to access suitable education, so we are forced to leave our paid roles to stay at home and give them the best life we can. And it’s important to remember that if it wasn’t for us, our children may find themselves in residential accommodation, or for some maybe even hospital wards.
Yet, we just go about our business. Usually quietly, always determinedly. Pretty much forced to accept that this is our reality. Some parents were aware of their extra-caring role as soon as their children were born. Others, like me, didn’t know that this was how life was going to be. It was more of a gradual process of understanding. I accept my shiny son in all his glorious colours. He is a totally unique human being, a massive force of nature, a beautiful enigma with so much potential and love inside him it hurts to think about it sometimes.
I fully accept my role as a parent carer. But I also know that my role is not typical when compared to that of parents of non-disabled children. And again – I accept that. I don’t know anything else other than parenting my son. I have nothing to compare it to. But what I DO know is that my life as his parent is taking a very different course than the lives of my friends with non-disabled children. I am unable to work as he is at home with me, full-time, with an EOTAS package of education as he is unable to attend school. For many families like mine – those who are waiting for suitable school placements or whose child is unable to attend school because of EBSA (emotionally based school avoidance) – giving up work or going part-time is by no means a choice. The pitifully low rate of Carers Allowance we receive, around £2.34 per hour based on a 35-hour week, is extremely insulting in these circumstances and demonstrates just how little the government recognises and values the crucial and life-changing work we do. The previous government’s inhumane actions to recoup ‘overpayments’ and vilify the carers affected has left a very bad taste in my mouth.
And that’s why I think it’s not only important to use the title ‘parent carer’, but to embrace it.
The Children and Families Act 2014 defines a parent carer as ‘a person aged 18 or over who provides or intends to provide care for a disabled child for whom the person has parental responsibility.’ That’s pretty dry, I think you’ll agree. It’s a role without beginning, or end. It’s a role like no other. Being a parent-carer means living with uncertainty, unpredictability, and living on the sidelines of society. It means giving up a part of yourself – perhaps even most of yourself – to centre the focus of your very BEING on your child. And often not knowing when, or if, that will ever change. We live with a pervasive fear of the future, and worry what will happen when we’re no longer able to fulfil our role. Importantly, my definition doesn’t involve making us out to be superheros, or people who were ‘specially chosen’ to parent our children because somehow we’re magically equipped to deal with this life. These stereotypes are wrong, and only serve to perpetuate the myth that this is our lot in life, we should go about our business quietly.
Here’s a stark fact that we should all be aware of. According to Carers UK, one third of unpaid carers in the UK have contemplated ending their own life. In parent carers, that number rises to 42%. Parent carer mental health is in crisis.
In the Carers UK analysis of the GP Patient Survey 2021, it’s documented that ‘caring can have a significant impact on health and wellbeing. 60% of carers report a long-term health condition or disability compared to 50% of non-carers.’ In their State of Caring report, 2022, the charity reported that ‘over a quarter of carers (29%) feel lonely often or always.’ There is also evidence that caring should be considered a ‘social determinant of health’ (Public Health England, Caring as a Social Determinant of Health, 2021).
I believe that if something doesn’t change for us soon, if the government doesn’t allow us and our families the care and support we urgently need, then we may not be able to continue saving them as much money in care costs as we currently do. And I’m guessing they wouldn’t like that.
What makes our situation infinitely more complex is that our chances of getting help are often inextricably linked with that of our children, and by that I mean if they don’t qualify for help, neither do we. Carers assessments are usually carried out at the same time as our children are assessed by social care – if, indeed, that opportunity ever arises. And we all know that the criteria for our children being eligible for help from social care is incredibly high. Anecdotal evidence from parent carers in my LA suggests that even if, by some magic set of circumstances, criteria IS met, then no workable or accessible help is given. It’s also common for some parent carers to be unaware of their right to an assessment and/or carers allowance.
Importantly, parent carers are not one homogenous group of people. We are all massively different, in the same way that our children are. Many of us have jobs, our own disabilities, and may be caring for multiple children or adults. Support that works for one family may not work for another. From the parliamentary roundtable I attended, it became clear that what is needed is a flexible portfolio of help: be it respite, a social worker, personal assistant, home help or direct payments. Help needs to be accessible and tailored to the needs of individuals and their own unique circumstances.
For me, not having a choice in life has become a great motivator. Ok, for a few years there like so many of you, I may have lost my sense of identity. Not having what is considered a ‘proper job’ and living in significantly reduced circumstances will do that to you. But accepting and embracing the title of parent carer, owning that title, has given me a sense of pride, openness and purpose. So, how about this for an alternative definition:
Parent Carer:
A person who shows total dedication, unconditional love, kindness, respect and nurturing to their child, indefinitely.
A person who advocates knowledgeably, fiercely and bravely, despite often being met with unfair blame and hostility.
A person who is often at breaking point, but always finds a way to bend just a bit further when needed, because there is no other choice.
A person who is most definitely not a superhero, but is forced to draw upon every bit of courage and strength on a daily basis, despite their own personal struggles.
A person who asks for a basic level of recognition and help in the extraordinary role they do, to ensure they are financially, physically and psychologically able to continue in their role for the future of their children.
We are ordinary people, living in extraordinary circumstances. I think that sums it all up much more adequately, don’t you?
If you’d like to learn more about how campaigners are trying to improve our rights, then have a look at the brilliant report ‘From Pillar to Post: The Reality of Carers Rights’ by Carers UK and @wecarecampaign
Links:
Report: https://carers.org/downloads/carers-rights-carers-reality-reporthrfinal.pdf
A Boy Less Ordinary 