Twenty one years ago, my partner and I both worked in the public sector, in modest but secure jobs. Our parents were enjoying well-earned retirements and were, in the main, fit and healthy.
Nineteen years ago, our first child was born with a rare neurological condition which meant that much of her young life was taken up with medical appointments with a range of medical professionals. After 6 month's maternity leave (the maximum I was allowed or could afford), I went back to work full time, and my partner and I managed these appointments between us, thanks in part to decent terms and conditions (good annual leave entitlement and flexi time). Our daughter had a place at a council-run SureStart Centre, with exemplary support from qualified, experienced childcare workers.
From the day she started school, there were clearly problems with her behaviour and by Year 1 she already had a statement of Special Educational Needs and at one point had 200% 1:1 support in class. At 9, she was additionally diagnosed with autism, which helped inasmuch as school staff at last knew what they were dealing with, but didn't make it any easier to manage. We were no strangers to exclusions, and each of those meant one of us taking time off from work. We will be forever grateful to those managers who allowed us to work from home at short notice and even, on some occasions, allowed us to bring her to work with us!
In 2007, my professional life took a hit when the project I had been working on with the council was put out to national contract, and I was TUPE'd to the private sector (thanks, New Labour). Now, I was working in a culture where I dreaded having to ask for time off, for fear of it being seen as a sign of weakness. Much of the "please come and take her home" requests then fell to my partner, with such frequency that he came to dread the school's number coming up on his phone.
The following year, my daughter suffered sudden and unexpected sight loss in one eye and needed emergency surgery over in Liverpool and at least a week's recovery time. For an 10 year old autistic child, who needed to remain still and calm during her recovery, I was given 3 days' compassionate leave. No "take what you need and we'll sort it out on your return" but the maximum (grudging) allowance with an instruction to work at home for the rest of the time. Perhaps unsurprisingly, this decision was made with by a male manager with no children....
A year later, I was offered a voluntary severance package, which I accepted with almost indecent haste. My daughter was about to transfer to high school, and this gave me the opportunity to take a year out (as I thought) to get her settled in. My partner carried on working full time, and by living carefully, I made the severance money (about a year's salary) last a year and a half. At that point, we applied for DLA. Although she would probably have been entitled to it for some years, we both felt that we had been earning reasonable salaries and that we could absorb the 'additional costs of disability' that DLA covered. (We were earning substantially less than David Cameron, who did claim DLA for his son, but let's not go there).
We battled on. My daughter's behaviour continued to challenge and became more erratic as she entered the hormonally-challenging teenage years, resulting in more exclusions and eventually a spectacular crash out of mainstream schooling and a hellish (for both of us) 6 month spell at home while the local authority tried to find a place at the over-subscribed special school. My 'year out' didn't look like coming to an end any time soon, as although she eventually did get back into school (it took Sir Gerald Kaufman's intervention to get it resolved), I still needed to be on hand during the day. And then my partner fell foul of the local authority job cuts imposed on council's by Coalition austerity. He had to make a decision - take voluntary severance or hang in there and hope that the next round of cuts wouldn't include compulsory redundancy. We had a talk - I had been a full time carer for nearly five years, and the effects on my wellbeing and mental health weren't good. We decided to take a risk - he would take the severance package and I would look for work.
Things were a bit ropey for a while (especially with the continued Coalition assault on social security benefits), but eventually I found a part time (well, 30 hpw, so almost full time) job. The salary wasn't great - about half what I'd been on before, but it was a route back into the workplace after a 5 year absence in my 40s - never a good time to lose skills and a track record!
By now, our household income was about a quarter what it had been in 2007, and we were held together by goodwill and tax credits. My partner now became our daughter's full time carer as she moved on from school to college. things should have been improving, but this was a troubled time for her (in part down to the college's actions) and it became clear that it would not be possible for him to find part time work to augment the massive £60 a week Carers Allowance he got for being permanently 'on call' for the next crisis (and there always is a next crisis).
And then my parents became ill. My mother was 90, with the multiple ailments of old age and the beginnings of dementia, and my 86 year old father (not in the best physical health himself) was her carer. I had encouraged them to apply for Attendance Allowance and we were all (pleasantly) surprised when they were both awarded higher rate; indicating how much we just absorb caring into our daily lives without appreciating quite how bad things might be getting. In February of 2016, my father was given a terminal cancer diagnosis, with a suggestion from his GP that he should probably put his affairs in order.
And so our lives shifted again. Our daughter was still struggling with college, but I had to leave my partner to deal with that (and our other child doing GCSEs) while I went to work and then did a 500 mile round trip every fortnight to my parents' house. Trips to the hospital, a weekend where my sister and I turned their dining room into a downstairs bedroom, setting up care plans, talking to the hospice staff, making sure their bills got paid and, as dad got weaker, discussing mum's inevitable need for residential care (something neither of them wanted). I called them nightly from home during the week and the calls become less and less coherent as dad's morphine levels rose. Luckily, we had excellent care workers coming in four times a day for each of them, but towards the end I was getting panicky phone calls as their grip on time deserted them. My sister lived closer, so was able to call in on them, but her ongoing health condition meant that she was physically and mentally exhausted and was limited in what support she could offer without making herself worse. And even though I worked in the field of adult social care, it was still really hard work navigating the many and various departments and people involved in their care, from the excellent carers to the unhelpful social worker; hospital OTs, community OTs, hospice staff, district nurses, pharmacists, the GP, the local authority ASC department. It was a full time job, but at least I had the income from my day job, all £16,000 a year of it, to hold the family together back home.
One Friday in mid-June, mum was taken into hospital, and I got a call at work from my sister to say that mum wasn't expected to come out again, so maybe I had better come down straight away (I had been planning to go down that evening anyway). On the same day, dad was admitted to a different hospital with chest and urinary infections which had made him very poorly. I did the 5 hour drive and arrived very late at night (the M6/M5 traffic on a Friday could mean journey times of up to 6 hours). The hospital(s) hadn't phoned to tell us of any deterioration so we got some sleep and intended to go and see mum as soon as visiting time came round. As it happened, we were on our way there when the hospital rang to say she had taken a turn for the worse, and by the time we arrived she had already died.
We then had to go to dad and break the news to him. To be honest, we both thought, looking at him, that he was about to join her that day, so I called my partner and suggested he and my son (who had just finished his last GCSE) come down by train. The following day, we were all together as a family, and dad held court from his bed - a hospice bed within the local community hospital - and said his goodbyes. Physically frail and in pain, his mind (now the urinary infection was being treated) as sharp as ever, and he was lucid and funny. We said our goodbyes, thinking this might be the last time we saw him.
On the Monday, I phoned work and explained the situation and was told to take whatever time I needed. In fact, dad lived another ten days after mum's death, and I spent a week sleeping on my sister's sofa and visiting him as often as possible (save for a quick, 24 hour round trip to vote in the referendum, having not had time to arrange a postal or proxy vote). As I was packing my bags to go home at the weekend, the hospital phoned to say he'd taken a turn for the worse, so another panicked call to work who (bless them) told me not to worry about it and to take the time I needed. In the end, dad died peacefully and pain-free on 28th June. My sister and I spent the rest of that week making arrangements for a joint funeral and initiating the legal processes as their executors, and I then returned home for a well-earned rest at work before travelling down again for the funeral.
There followed another few months of estate-sorting and house-clearing, involving more weekend trips and, finally, a large rental van to bring stuff back home to sort and we finally closed the door on their home of 23 years in October.
In the meantime, we had managed to find our daughter another college place and get our son into sixth form college (he passed his GCSEs, if you were wondering). We are still caring for our daughter (we probably always will be, given the nature of her disability) and now my mother in law is showing the first signs of dementia, so it looks like the cycle is about to start again.
All of which goes to demonstrate that a new "worker's right" to twelve months' unpaid care leave is utterly useless - most of us cannot afford to do without pay for a year, even if our jobs are held open for us, and so we mostly just juggle our caring responsibilities as best we can. The best employers already make accommodations for their workforce; the worst don't now and will do their best not to in the future (and to be fair to them, why should employers subsidise the care industry by effectively seconding their employees to it for a year?). My partner and I have both, at various times, given up work in order to care for a relative, but it was a decision forced on us by other circumstances and we did at least have the paltry £60 a week the government deems sufficient to pay carers. Neither of us could really "afford" to give up work and it's been damned hard work coping on that much of an income reduction.
In reality, those who can afford to take up the generous offer of unpaid leave will, by and large, have parents with savings of their own; in other words, the already-comfortable middle classes. In essence, this policy will end up (by accident or design) being more about preserving inheritances than truly solving the care crisis.
And since when did the Conservatives ever really care about Workers' Rights?
