Today, the Political Studies Association Commission on Care has launched their report, Towards a New Deal For Care and Carers. Fawcett chair Belinda Phipps and our CEO Sam Smethers were the co-chairs of this commission and Fawcett contributed research to the report. The care crisis is deeply gendered, as the majority of the care workforce, unpaid carers, and those who are cared for are women. This week’s blog comes from Nicky Clark, a disability rights campaigner and parent carer who has written extensively on disability issues for The Guardian, The Independent and the New Statesman. Nicky calls on the Government and society to recognise the worth of unpaid carers across the UK, especially as we prepare to leave the EU.

There are currently more than six million unpaid carers in the UK and, of this number, 58% of us are women. Framed through the paradigm of Brexit and with a view to #FaceHerFuture, I wanted to do something most carers don’t do. I want to ask when we are going to be moved from the bottom of everyone’s list of concerns.

I became a carer when my youngest daughter was diagnosed with a profound learning disability, epilepsy and autism, my mum was diagnosed with Alzheimer’s disease and my older daughter was diagnosed with Asperger’s syndrome – all between 2000-2005.

I had been caring unofficially from much earlier, as all of the conditions began gently manifesting themselves, however in that five year period, the multiple diagnoses were made and my role as a sandwich carer became official.

I was allocated Carer’s Allowance, but I was caring in excess of 50 hours a week for more than 20 years. I calculated my caring responsibilities against the matrix of the EU working time directive and you can read the results of that here. I also calculated the money I saved the Treasury at the height of my caring responsibilities, which was approximately £180,000 per year.

The £62 per week I received in Carer’s Allowance didn’t add up to much, especially compared to the loss of future income in trying to get a job with a 23-year gap on my CV, as well as the impact on my physical and mental health as I still have to fight for the most basic human rights for those I love. Once again, I wonder when unpaid carers will be recognised for the worth we possess, not the so-called ‘cost’ to the public purse, in terms of paltry benefits.

Whilst the EU didn’t directly impose the austerity measures currently driving the Government’s changes to social security, the fear of a further removal of lifeline benefits is real. As the Government moves forward with replacing the Human Rights Act with a British Bill of Rights, I fear that existing equality and human rights agreements will no longer apply.

As NHS England also supports many disabled people with continuing care awards and the Care Quality Commission uses human rights in its investigating framework, this step by the Government is worrying. The ONS 2011 census documented that the percentage of women providing unpaid care, whilst working full-time, was almost a third higher than men in England and two fifths higher than men in Wales.

The 2011 census also shows us that between the ages of 50-64, 15% of women are providing 50 or more hours of unpaid care per week. At the same time, women are adversely affected in terms of potential promotion and employment due to the increase in their unpaid caring responsibilities. This at a time when we are being repeatedly told by the Government that the objective is to encourage work and decrease benefit dependency.

Of the unpaid carers who don’t work at all, most are below state pension age. The unpaid care these men and women provide, while vital, poses a barrier to work. However, the shaming of benefit claimants continues.

Given that 6% of UK paid care workers are EU migrant workers, and that this underpaid role is notoriously under-subscribed as it is, many women will be facing a future where having to leave paid work to become an unpaid family carer is a very real decision.

With an increasingly ageing population, the likelihood is that most of us will become an unpaid carer at some point in our lives.

It’s time for the Government and society to fully appreciate family carers for the work we do. A place in the Cabinet or Shadow Cabinet would be a good start, with the creation of the role of Minister for Carers. Having been an unpaid carer all these years, I’m available.

Being an unpaid carer impacts you financially, socially, and affects your physical and mental health. It’s a false economy to ignore this fact. We need to be represented in the Brexit discussions, which will affect us further. As the mechanism for the UK’s exit from the EU rolls slowly forward, the voices of millions of carers, the majority of whom are women, must be heard.


Nicky is a writer, campaigner, interviewer, broadcaster and performer. She has written extensively on disability issues since 2008 for The Guardian, The Independent and the New Statesman. Nicky has also written on feminism, abortion rights, cyber bullying and film and television. In 2015 Nicky was diagnosed with autism.