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‘Neglected, Exhausted and Exploited’: A Mum’s Story of Caring for her Disabled Daughter 24 Hours a Day  

A parent carer to a severely disabled woman explains just how difficult life can be – and just how little help and support is available

Rachel Adam-Smith shares the reality of her life as a carer for her 21-year-old daughter Francesca

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I am a parent carer to a 21-year-old who is non-verbal, has complex medical needs, and is severely disabled. While I fight a system that creates too many challenges and expects too much from those who provide care to loved ones, I am also battling heart failure.

I was born with congenital heart disease and was fitted with my first pacemaker following the birth of my daughter, Francesca. Caring for her, and the lack of sleep that entails, my cardiologist believes caused me to suffer a pulmonary oedema, a condition in which fluid builds up in the lungs, making it difficult to breathe, in 2022.

Before becoming a parent, I worked as cabin crew, which allowed me to explore the world. My daughter’s increasing dependence, and my forever-expanding role as her carer, now means I barely get away at all.

Holidays, having a meal with friends, being able to attend my medical appointments, or even getting a good night’s sleep aren’t guaranteed.

Many unpaid carers are left to look after their relative in excess of 90 hours a week – more than twice the length, 36.7 hours, of the average working week for Brits.

To receive carers allowance, you must provide at least 35 hours per week, but there is no limit to the amount of hours you might do. The allowance – when applied to a 90-hour-week – works out at less than £1 an hour.

Unlike for those employed in carer roles, there are no working time regulations and so no protections. No breaks, annual leave, sick leave, or uninterrupted rest periods. We are expected to carry on, day after day, with little or no sleep. That’s why many carers don’t need alarm clocks – because their shifts never end.

In any other context, this would never be tolerated.

Some carers may be lucky enough to catch a break, but it is not guaranteed, and many are left begging and having to justify their need to get time off, over and again. Imagine having to do this simply to attend medical appointments, do the weekly shop, or get some fresh air.

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Even if you’re lucky enough to get respite, it can be cancelled at short notice because of a shortage of skilled and reliable carers in the social care system. Often, any time off is spent filling out the latest form or appeal, to justify the need for equipment or funding.

The crisis in the social care system is leaving unpaid carers not only overworked, but picking up every broken piece of a system that just doesn’t work. It is simply not fair.

My own experiences – particularly when in hospital with my daughter – have meant that I have had to ask someone to help when I need to go to the toilet, have a shower, or go and get food as her difficulties mean that she can’t be left alone. I am 47 years old, yet I’m having to seek permission to do the simplest of things.

There should be no expectation that people in caring roles should remain on the job 24 hours a day and be denied the ability to do things that a paid employee – such as a nurse or support worker – would do. Basic things: like eat, sleep, use the bathroom, and have time off.

Many unpaid carers are being left in this situation, whether it is at home or while they are in hospital with their relative. We are human beings and we have the same needs as everyone else.

Expecting unpaid carers to work continuous shifts is also a health and safety risk as we are both their driver and nurse, administering medications, often on no sleep. This is accepted, as it saves the Government money.

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As a consequence of their stay-at-home role, many unpaid carers have to give up their careers and, along with them, their salaries and pensions. Instead, they receive an allowance of £81.90 per week – £11.70 a day. Divided by the minimum of 35 hours of care required a week to qualify, the payment equates to £2.34 an hour.

Broken down further, for the 47% of unpaid carers doing 90 hours care a week and it’s 0.91p an hour. Some unpaid carers, depending on the number of hours they care per week, can earn on top of their allowance – but even this is restricted by the Government to £151 per week.

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On average, disabled households need an additional £975 a month to have the same standard of living as non-disabled households. Eighty-odd pounds isn’t enough, and restricting what someone can earn beyond that is cruel. Many carers are being pushed into poverty, left reliant on food banks, fundraising and grants.

The amount of hours a week unpaid carers are expected to do – or more accurately, left to do – would normally be covered by a team of carers, not just one person.

Unpaid carers are not ‘unsung heroes’ or ‘volunteers’, as the Government likes to call them. They are neglected, exhausted, human beings who are being exploited.

Something needs to change, both in terms of the hours we are expected to care, and the amount we receive for the sacrifice and commitment we make for our loved ones. Enough is enough.


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