It’s been a pivotal month for us carers in which our dedication to our loved ones has made the headlines for various reasons,  good and bad.

The good news was that Liberal Democrat MP Wendy Chamberlain’s Carer’s Leave Act finally became law on 6th April.

This provides all carers in employment with a new statutory right to take five days of unpaid leave from work each year to fulfil their caring responsibilities. Wendy, herself, said she would have wanted this to be paid leave but the principle is now enshrined in law and at least doors have been opened. 

 It must come as some relief to many families that are balancing having to work and care in this cost-of-living crisis. 

Both my husband and I worked full time to pay the bills whilst we were bringing up our two kids in the South East. We are proud of them both: one neurotypical, artistic daughter and our son who has Autism and a Learning Disability. 

Archie, now 21, needs constant care and supervision. Even when he reached an age that most teenagers could self-administer paracetamol and have a duvet day, we would have to take it in turns to negotiate time off with our bosses to look after him.  My husband used up countless days of Annual Leave when he was sick or I had an INSET day. We also needed to pay for a childminder after school as his special needs transport would deliver him home by 4pm and neither of us could leave work by then. 

As if that wasn’t hard enough, at the age of 16 he developed Epilepsy.

The months after this crushing diagnosis were made of nightmares while the neurologist tried to balance his meds. Right in the middle of teaching a French lesson, I would get a call from his school saying he had fitted, injured himself and they had called the paramedics. Trying not to panic, I would rapidly set work for the class, inform a colleague I needed to leave immediately and try to stick to the speed limit as I drove the twenty miles down the motorway to my injured son. The worst was time when he gave himself a black eye as he collapsed, convulsing on to a urinal – poor thing!

My Head Teacher was always supportive in the various emergency scenarios that arose but there was always the expectation that I would make up the time at some point with extra cover or more duties. It also came with the guilt that my colleagues had to compensate for my absences. 

I was, though, lucky and can imagine that other employers and employees may be less sympathetic. I really hope that the Carer’s Leave Act will remove the onus on us to make up for lost work time and lead to more empathy with colleagues. Quite frankly, we carers have enough on our plates. 

This new law is hopefully a stepping stone to so much more that can be done for the 2.4 million unpaid carers in the UK who save the economy an estimated £164 billion. 

Carer’s Allowance- changing to Carer’s Support Payment in Scotland, is now a meagre £81.90 per week or £4,258.80 per annum. For those of us lucky enough to live north of the border we can add in the supplements we get in June and December and we get a grand total of £4,836. That’s an hourly rate of 49p in England and Wales and 55p in Scotland -if you consider most of us are on duty day and night.

Unfortunately, the caveat is that if you earn over an arbitrary £151 -even by 1p a week- you lose Carer’s Allowance. It’s a cliff edge.  Unlike annual tax you can’t declare annual income. There isn’t a system for short term contracts or occasional work. It disincentives carers to seek part-time jobs which can be vital for one’s mental health and well-being.

This leads to another reason why a carer hit the headlines this week. Whilst caring for her elderly mother and claiming Carer’s Allowance she worked and earned over the permitted threshold. It took the DWP several years to catch up with her as she didn’t declare the change in income.  She agreed a repayment plan but when her mother passed away,  the DWP decided to whip away £16,000 of her inheritance money. Their reasoning was that it was taxpayers’ money that needed to be recovered. 

Given that this carer had, undoubtedly, saved the taxpayer significant amounts of money over the years, this seems so cruel and shortsighted. The whole story reinforces the feeling that we are taken advantage of due to our emotional connection to our vulnerable loved ones. The recent Guardian campaign for carers has uncovered hundreds more similar stories of Carers having to pay back thousands of pounds.

Not only that but many are finding themselves struggling to pay bills due to increased caring roles.

Carers UK say; 

Unpaid carers are facing unprecedented financial difficulties because of the UK’s current cost of living crisis, piling further stress on those caring for family and friends after an extremely challenging three years caring through COVID-19. Without urgent support from Government, we are now extremely worried that many will simply be unable to cope.

I am pleased that they are currently campaigning to raise the level of Carer’s Allowance and increasing the earnings limit, benefitting at least 175,000 unpaid carers.

Respite is also a key issue for us. When you care for a loved one with disabilities you don’t get Bank Holidays or five weeks’ holiday. Archie will never live independently so we are not typical empty nesters. We are not yet ready for him to go to full residential care- we will keep him with us as long as we are able. 

But just at a time when we should have fewer responsibilities and more freedom to travel whilst we are fit and healthy to do so, I can sometimes feel overwhelmingly trapped. We do get 4 weeks respite as carers but any breaks from Archie have to be planned with great precision and I am often exhausted before we set off. I watch in envy as our neighbours take off for weeks on end in their camper-van to Europe. I try not to get resentful when my American cousins, both retired teachers, post endless smiley photos of their numerous trips.

The Carer’s Leave Act, as Wendy Chamberlain MP says, is opening a door to so much more that can be done to support carers. I hope that, for my friends still working and bringing up children with disabilities that 5 days’ unpaid leave will perhaps become 10 days paid leave. Let’s raise Carer’s Allowance and the earnings threshold and allow carers to declare annual earnings, like an HMRC self- assessment.

I hope too, that carers will not be prosecuted, but be recognised more readily for the huge sacrifices they make and their dedication acknowledged and applauded more often.  

* Amanda Clark is an unpaid Carer and member of Perth and Kinross Lib Dems