Successive governments have repeatedly overlooked the contribution of unpaid carers and failed to meet their needs
Mel lives with her son, who has learning disabilities and depends on his mum for round the clock care. Ayesha resigned after her request for flexible working hours – in which she highlighted her struggle to balance work and caring commitments for her mum, diagnosed with dementia – was rejected. Nate has been a carer for his dad, who lives with multiple sclerosis, since a young age.
These are pseudonyms, but the scenarios are taking place up and down the country. There are many Mels, Ayeshas and Nates, who live among us as parent carers confined by their commitments; sandwich carers looking after young children and elderly parents/in-laws simultaneously, sometimes juggling work and care; or young carers caught between their commitment for their nearest and dearest and future life choices that depend on their education attainment.
They are often referred to as hidden carers and not visible in society, particularly to health and social care professionals, because of the nature of the caregiver role, which takes place behind closed doors. But are carers really hidden?
Hidden suggests something that is out of sight and concealed. Yet carers and those they care for will usually have a lot of contact with healthcare staff and other professionals.
Carers often escort their loved ones to appointments at hospitals, or with doctors or social workers. These meetings are critical in identifying those providing care, whose work, education and lives are often impacted by their caring role.
I became a carer in my late teens. It happened overnight when my dad suffered a stroke at the age of just 50, which left him with limited mobility and impaired speech. His determination to live as closely as possible to his pre-stroke life motivated me to ensure I was with him every step on his recovery journey. This came at the expense of my education and career progression, but I never once regretted my decision.
Over the course of 15 years, my dad had extensive involvement from the NHS and adult social care. I spoke to many health and care professionals on countless occasions during consultations, assessments and progress reviews, including detailing the caregiving tasks I, my mother and sister undertook for my dad.
After 14 years of caregiving, as my dad’s health deteriorated, I reached breaking point, struggling to balance caring responsibilities alongside work and education commitments. I was fortunate enough to have understanding employers who appreciated my caring situation, but felt unable to reduce my working hours.
I took it on myself to seek a carers assessment, something that had never been offered, despite all the engagements with health and social care professionals. The assessment focuses on carers’ needs and aims to identify how best they can be supported. In the final six months of my dad’s life, we managed to secure a care package that meant care workers visited our home several times a day to assist with his daily care, allowing us to spend quality time with him.
The coronavirus crisis has highlighted the role of NHS staff, who rightly deserve the praise being heaped on them. In comparison, appreciation of care workers, who are equally deserving praise, was not so visible. Meanwhile, carers continue to be ignored.
In Scotland, Nicola Sturgeon acknowledged carers’ vital roles and announced extra payments for them. Boris Johnson and his government failed to make a similar gesture. More crucially, the vital role carers had in preventing the NHS from being overwhelmed received negligible attention.
But this comes as no surprise. The current and preceding governments have repeatedly overlooked carers and their needs. The Care Act 2014 was a significant step forward for carer recognition, placing a duty on local authorities to assess their needs, to identify where support can be provided for them to continue with work or education, or to give respite from the monotony of their responsibilities. But in practice this was difficult to deliver in the midst of austerity cuts. In the adult social care sector, demand for care services outstripped supply, consequently increasing the dependency on family and friends to fill the gaps.
Those in power are ignoring the challenges millions of carers are up against day in, day out, yet still expect this army to diligently continue supporting our loved ones with little recognition for our commitment.
So, please stop referring to us as hidden carers. We are seen and heard every day. We’re not hidden, just conveniently ignored – and therein lies the problem.
Mina Akhtar is a doctoral researcher at the University of Birmingham