It is time to recognise the unpaid carer as a worker

The guest post you are about to read from a good colleague considers one of the greatest issues confronting the care system in the UK – namely the need for radical compensatory measures to sustain ‘unpaid carers’.

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Rachel Adam-Smith

Disabled children are more likely than other children to live in households which are unable to afford things that are generally regarded as important and ordinary for children in the twenty-first century, such as having more than one pair of shoes, access to outside play space, participating in leisure activities.[1]

Disabled people (adults or children) should be entitled to enjoy the same human rights as others and to expect a quality of life comparable to that of their peers who do not live with a disability. However, there is a significant level of social exclusion and material disadvantage in society. An ordinary life is still beyond the reach of many disabled children and their families.[2] This is quite possibly due to the fact their parents are not paid for the vital work they do in caring for them.

Living standards in families with disabled children are lower across the board than those of their peers.[3] The reason for this, I think, is the failure to recognise that many parents are having to give up their careers to care for their child leaving them reliant on state benefits.

In both lone-parents and two-parent households, the caring workload tends to be weighted towards mothers, and this has an impact on their employment and career opportunities.[4] As a group, parents of disabled children are reported to experience higher levels of stress and lower levels of well-being than those of non-disabled children.[5] Mums consistently report the stress of navigating services and of battling resources to support their child as having a major impact on their mental health and well-being.[6]

Do you work?

Often, I get asked what I do for work. My response, “I’m just a carer to my disabled daughter”. But why do I use the word “just”. Perhaps, because I think people won’t understand or presume that I am unemployed, lazy (those ‘on benefits’ are often depicted as this in the tabloids), or that it’s not a career, after all, our role as an unpaid carer is not listed as an option when filling out forms: recognition that a person may work as an unpaid ‘carer’ does not seem to exist, perhaps making us feel even more devalued. Therefore, we must put ‘unemployed’ or ‘homemaker’. That is not a nice feeling, particularly, when the reality is unpaid carers are often highly skilled (working as their relative’s advocate, carer, therapist, nurse, secretary and so on) and often work more hours a week than any other person who is employed.

When I tell people what I do, I am often met with sympathy and comments such as “you do an incredibly valuable job”, “you are an inspiration”, ‘you must be exhausted but keep going” or “I couldn’t do it”. The Government, DWP and many charities sing our praises, giving us a virtual pat on the back. We need more than a pat on the back, we need proper recognition for the work we do, after all we save the Government a fortune every year. During the pandemic, with the increase in our hours, the care we provided saved the Government £135 billion (CarersUK November 2020)[7]. Despite the increased work load we have been under during this time; the Government has done nothing to protect our health and wellbeing. Carers (if they are lucky) receive an allowance of just £67.25 a week.[8]

Rest Breaks at work

Unpaid carers work an incredible number of hours, often more than 70 hours a week, sometimes 100 hours a week, sometimes more. They are often on call 24 hours a day. If carers were paid and had employment rights would these number of hours be legal? No, of course not. After all, is it even physically possible to expect people to work 24 hours a day, every day of the year? The Government does not seem to think so when we look at their rules on workers entitlement to breaks. The Government website states workers are entitled to three types of breaks, rest breaks at work, daily rest, and weekly rest. Workers have the right to one uninterrupted break during their working day if they work more than 6 hours. Further, they have the right to 11 hours rest between working days and they have the right to either an uninterrupted 24 hours without any work each week or an uninterrupted 48 hours without any work each fortnight.[9] By law an employee cannot work more than an average 48 hours a week, unless they agree to more hours or the job is not covered by the law on working hours, such as cabin crew.[10]

When I was cabin crew, I could only work a certain number of hours a day, firstly because I would go over the legal threshold of flying hours allowed in one day, and secondly, because they couldn’t possibly expect crew to work 24 hours a day every day of the week when the safety of the aircraft and passengers was paramount. Would anyone do that job if they were expected to work that number of hours every day of the year even if they were paid? Nobody could, I do not think it is physically possible. Therefore, it seems to be accepted by the Government that no one could or should work 24 hours a day every day of the week. The Government states that every worker should have a rest of 11 hours between shifts, except of course, the unpaid carer, the reason, because they are not recognised by employment law, this is despite the fact unpaid carers were recognised as key workers during the pandemic.[11] The key word here being ‘worker’. Defined as a worker by the Government during the pandemic but not given the same employment rights as any other worker.[12] Why is it acceptable that unpaid carers can work an excessive number of hours with no breaks, no sick leave, no annual leave, what about their safety, their health, and the safety of the person they are caring for?

If we say we are exhausted and need help, nothing changes. Often, I think professionals just nod their head at me or say, “you must be”, or comments such as “you are doing a great job, keep on going” or “make sure you find time to look after yourself” (how exactly am I meant to do that). Periodically we are asked by a GP or social worker, “how we are feeling”, as though how we are feeling matters. What changes when we say we are exhausted, worn out, can’t eat properly, have no time for ourselves or for our other family members? Nothing. Occasionally we are asked by a professional “do you feel like just walking away” or “if we want to end it all”. Why must it get to the stage where we are asked if we want to end our life? Why can we not just be given proper rest so none of us are put in that situation? If we are being asked by professionals if we have thought about ending our life – then something is clearly wrong about the way unpaid carers are being treated. We are given no time to rest, to look after our own health, to take a holiday or even to have a bath. Anyone else working, for example a paid carer in a care home gets the chance to sleep properly at night, ensuring they get minimum rest between shifts or get days off to socialise, meet family, food shop, or just rest. We are all human, none of us are superhuman but unpaid carers are treated as though we are. We aren’t.

Unpaid Carer – Career Choice?

You might have become an unpaid carer when your child was born, or had to give up work after a relative became disabled. At whatever stage you became an unpaid carer, most likely you will have had to leave the career you once had to take up a new role as an unpaid carer, one that you may never have chosen, one that you never received any training for, and one you often receive no support for. When we started our role as carers, did we realise we wouldn’t be paid, that we would have a working roster that was continuous every day of the year. Did we realise that we might struggle to get breaks, that we would have to continue to work even when we felt unwell, that we might not get any respite, and we would not be entitled to any annual leave as other workers are? Imagine knowing that you wouldn’t get a break from your job, that you had to work every day of the year, 24 hours a day, even when unwell and you didn’t know when or if that would ever change. Then imagine you’re not going to be paid for that job. Just an allowance that amounts to less than a £1 an hour for many. The role does not come with any employment rights. We have the right to a carers assessment. At first, we are hopeful this assessment is the answer to our prayers, and we will get help, but it just becomes a piece of paper with some writing on it – “blah blah blah” (as Greta would say) – it may as well say that. For so many it makes no difference if we can’t enforce our rights or there are no carers to be employed through direct payments to meet our assessed needs. For many we have sacrificed our careers, we are unable to further our education, we cannot save for a pension, and often we can’t save for a holiday or fun activities as other families do, as any “spare” money must go towards therapy, equipment, splints and so on, items and provision that the NHS or LA should be providing but don’t. Many of us are reduced to being on a low income, applying to charities for grants or having to fundraise for vital equipment that should be provided by the NHS.

The results of leaving carers unsupported and unpaid?

Our own health starts to deteriorate, we are exhausted, we are constantly battling to ensure provision is in place for our child, or for their medical needs to be met. When we need the support and keep pushing for help, or to enforce our rights, we are labelled as difficult, not coping, and then, for some the safeguarding tool is used against them. No doubt many of us have PTSD from the endless trauma and exhaustion. We are not just mum or dad (as many professionals like to call us), but skilled workers. We are working more than the legal hours, with no minimum wage and no employment rights. The Government know we will continue to do it because we are caring for our loved ones but let’s call it what it is … exploitation.

The unpaid carer is a worker

Why can’t we pay ourselves direct payments if we can’t find the paid care workers we have been assessed as needing? I suppose if we were, we would then be classed as workers with employment rights and that is clearly a path the Government does not want to take. Instead, they leave us struggling both physically and financially. There is no kindness, no attempts to help us, we are just left battling a system that fails to recognise the impact caring has on our lives and occasionally, mostly in carers week, we get the ‘give yourself a pat on the back for the valuable work that you do or come and have a free cup of coffee’. Remember that word … ‘work’. Because that is what we are doing… working. They recognise that we are working when it suits them but not when we are fighting for the same employment rights and minimum wage as everyone else.

I cannot believe I am 19 years into my caring role, and nothing has changed. Other than the fact I look more exhausted and feel more defeated. Will it ever change? Can 2022 be the year we change things for the better and ensure unpaid carers are recognised as workers and given the same rights?

[1] Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 21

[2] Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 54

[3] Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 54

[4] N Coleman and L Lancely, Lone parent obligations: supporting the journey into work, Department for Work and Pensions Research Report 736, 2011. Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 25.

[5] Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 29

[6] C Rogers, Intellectual disability and being human: a care ethics model, Routledge, 2016. Steve Broach and Luke Clements, Disabled Children: a legal handbook, chapter 1, p. 29

Luke Clements

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