Finding work that works as a mother and carer #IWD18

Finding work that works as a mother and carer #IWD18

Seven years ago, on 8th March 2011, while I was busy giving birth to my second child, thousands of women marched the sun strewn streets of London to mark the 100th anniversary of International Women’s Day.

As I peered out of the 6th floor windows of the St Thomas’s Hospital birth suite at the sea of purposeful female bodies and placards crossing Westminster Bridge below me, I never imagined that day would leave its mark on me as any kind of feminist or campaigner. Between greedy gasps of glorious gas and air, I had no idea that the little boy I was about to give birth to would open my eyes to a world where women are so often vastly disadvantaged.

I didn’t know my little boy would have a disability. I didn’t know I was about to become not just a parent but also a carer. I didn’t know that would put me in a position where continuing to follow my career path in the conventional way would become impossible.

The juggling that today’s working parents face in keeping it all together at home and at work is a constant headline hitter.      When caring responsibilities are thrown into the mix, for all too many parents they soon find the option to juggle just isn’t there at all. The balls are not in their hands, or even in their court.

For many parents, they soon discover that there is no workable equilibrium between the demands of employment and the demands of caring for a child with special needs or disabilities. Whether through exhaustion from managing night-time care, or through finding themselves buried under a constant avalanche of malco-ordinated health and social care appointments, the window for productive work shrinks rapidly.

Even for the lucky few, whose child sleeps without need for medication, feeds or nighttime settling, and whose appointment load is reduced to just a few a month through ruthless navigation of the system, the chance of finding employment flexible enough to allow for the inevitable emergencies, equipment deliveries and paediatric or education reviews is slim.

But talk to just a few parents of children with disabilities who have managed to find work that works, and they will tell you that work can be not just a financial necessity but a sanity saver too.

Right now, employers are just beginning to switch on to the benefits of flexible working. There are the enlightened few, who have been doing it for years, and reaping the productivity and loyalty rewards as a result, but for the mainstream it is still early days.

While we are on this path to flexible working becoming the norm for the majority of office based jobs (because it can and absolutely should), please let’s not forget the carers amongst us.

Most often, it’s the women who are the parent carers.

Most often, they aren’t returning to the workforce. I am one of just 16% who has, compared to 74% of mothers of non-disabled children.

We need to raise up the 16%.

This post was written for International Women’s Day 2018, as part of #whenibecameamother being hosted on Instagram by @steph_dontbuyherflowers


Who cares at work? Are you investing in the carers in your workforce?

Who cares at work? Are you investing in the carers in your workforce?

Four years ago I sat in front of a group of parliamentarians at Westminster, alongside four engaging, intelligent women who all had successful careers and who also happened to be parents and carers for their disabled children.

We were there to share our stories about the childcare crisis for disabled children, and the extreme challenges of maintaining any kind of career around having a child with disabilities.

Under the wings of Contact, and Working Families, who paved the way in campaigning for affordable childcare provision for disabled children, we achieved widespread awareness of the need for change, and an amendment to new childcare legislation to help make childcare more affordable for parent carers, who often pay a huge premium for scant provision.

Since that time, the conversation has moved on. Childcare provision still needs to evolve. Massively so. But what’s really exciting is that the other main driver in making it possible for parent carers to work – flexible employment – seems to be undergoing quite a revolution.

The movement towards flexible working becoming the norm in the UK gained major ground in the UK last year. Though the benefits of flexible working had been established many years previously, in 2017 it was the topic du jour for companies alongside workplace wellbeing. Report after report was published, proclaiming the ‘workplace revolution’, with firms not embracing flexible working finger pointed as being out of step with employees.

Perhaps it’s the millennial effect, as more and more of the next generation take leadership positions in the workforce. A generation that knows it is possible to carry out many work tasks effectively, more so in fact, when you have greater choice over where and when you will do so.

Maybe you are one of those millennial leaders, or perhaps you’re the other side of 40 and have been managing teams for years. Either way, you will surely be thinking about how to embrace flexibility in your team or in your business.

The reality is that if you’re not, employees will leave your organisation and seek work elsewhere. Either at companies who are embracing the change or by working for themselves, as increasing numbers of people are doing because technology is enabling us to do so.

The latest Modern Families Index from Working Families showed that work is taking a heavy toll on home life for many. Employees who come home too drained to even cook a meal, with day after day of juggling family or caring commitments with an inflexible work schedule, are finally saying they have had enough and are voting with their feet.

For parent carers with disabled children, the challenge of combining work, parenting and caring can be insurmountable.

Climbing a mountain of managing personal care, feeds, medication and therapy, school runs and the usual breakfast rush before clocking in for a day’s work.

Juggling not just school plays, celebration assemblies and sports days, which you actually want to be at, with a multitude of things you don’t want to be at but have to.

Team Around the Child meetings, EHCP reviews, paediatric appointments of multiple types all at uncoordinated times, wheelchair assessments at the opposite end of the county, social care reviews, adaptations meetings, equipment and medication deliveries. These commitments quickly fill up the calendar if you let them and it’s often a fight with health and social care to reduce the appointment load.

Coordinating all of that while keeping one’s bottom appended to a chair in a particular office for 40+ hours a week is probably impossible. Certainly I’ve never managed it and nor would I want to, parent carer or otherwise.

What is possible though, is making work work around these commitments. Working from home, and videoing in to team meetings on the day of an equipment delivery. Starting early or finishing late to accommodate a TAC meeting. Making use of the hospital wifi to whip up a report or a proposal while waiting for an appointment. Holing up in a cafe on a Saturday morning to write a strategy.

It’s estimated that between 1 in 7 and 1 in 9 people in the workforce have caring responsibilities at home, be that for a disabled child or a sick or elderly relative. With up to million more UK workers secretly juggling caring responsibilities with their jobs, because they are nervous about telling employers.

If you’re a manager or a business owner, you will almost certainly have carers in your teams.

If you don’t know who they are, they’re pretty easy to spot even if they don’t identify themselves as such.

More than likely they will be the ones avoiding the afternoon water cooler chit chat. Not because they are anti-social, but because they HAVE to leave on time.

More than likely they will be the ones who never pull a sickie. Not because they are never ill but because they know a time will come when they need to ask for unpaid leave to accommodate their caring responsibilities.

More than likely they will be the ones who show unfailing commitment to their work. Not because they are workaholics but because disability and ill-health is expensive and they NEED that salary to keep on rising. Perhaps to pay for premium-priced specialist childcare, or to buy a wheelchair accessible vehicle, or to adapt their home.

At the moment, the law is not on our side as carers. There is no legal right to ‘carer’s leave’. Most of us resort to using up annual leave entitlement to manage caring needs, taking unpaid leave or taking sick leave if the stress of working and caring starts to affect their own health.

Until paid carer’s leave is a legal requirement with government funding attached – like statutory maternity pay and sick pay – there are things you can do as an employer, a business owner or a team manager to help your company hold on to talented people in whom you have inevitably invested significant time and money.

  • Introduce paid leave for carers off your own back. It’ll pay for itself in loyalty and talent retention.
  • Enable staff to work flexibly wherever possible. Use technology to your advantage. Focus on productivity not presenteeism.
  • Remember dads are carers too. This isn’t about just women in the workforce and nor should it be.
  • Foster an open culture that acknowledges your employees have a home life that will always be more important to them than you are.
  • Put workplace wellbeing at the heart of your people management. A well and happy employee will always do a better job, at work and at home. Stress helplines and yoga classes are just a sticking plaster though. The key to wellness at work is to place realistic workloads and clear objectives on your staff. Don’t leave them floundering under overwhelming or vague expectations. It’s a recipe for burnout, particularly for carers for whom there is no or little rest break at home.

With the cost of replacing talented employees in the many thousands, and the number of carers in the workforce expected to rise massively as the population ages and medical advances mean more children with disabilities survive, you will be saving yourself a packet by investing in your carers now.

Careering off-track or stalling on re-entry: the hidden brain drain of parent carers from the workforce

Careering off-track or stalling on re-entry: the hidden brain drain of parent carers from the workforce

Since Motherland exploded onto our TV screens last month, the conversation about working parenthood has shifted up a gear. Whether you relate to the character parodies or find them slightly absurd, there isn’t a mother I’ve spoken to who hasn’t recognised a bit of their own lives in the narrative.

As a female growing up in the 80s and 90s, I was always supported to believe that I would have a career. That I could be independent and successful in my chosen path. And, for the most part, I have been. Probably a bit of a ‘Julia’, with a slightly non-descript creative consultancy career and a comfortable home life but with far greater marital equity and less rage than the Motherland character enjoys. (I mean, just where is her husband FGS any why hasn’t she left him yet is all I could think as I binge watched on iPlayer…)

What I hadn’t accounted for though was just how hard it would be, nor how increasingly necessary it would become, to maintain my career once our second child was born with disabilities.

With my first, it was easy. At 8 months, she went off to childcare and we both went to work. A small independent nursery followed by a nanny-share, then a regular pre-school, saw her through her early years contentedly. Childcare was easy to come by, if pricey, and I never doubted my ability to return to work.

With a disabled child, there were no childcare options at all.

As well as the absence of childcare, my calendar was overwhelmed with disability related commitments. Orange had no diagnosis so on top of the twice weekly physiotherapy appointments there were diagnostic appointments, medical reviews and assessments to coordinate.

Unable to return to work as planned, we had to sell our home and move in with my mum while we found our feet again.

In the end, it took me almost three years to build up again to full time work. I have only been able to do this because we moved across the country, have family help and both of us have jobs that mean we can work flexibly with just enough frequency to keep all the plates spinning.

But I am one of an extreme minority.

As Sophie Walker, the leader of the Women’s Equality Party and mother to a child with autism says in her piece today for Working Families, we are ‘a small – and very grateful – minority‘ and yet still ‘perpetually worried that it might all fall apart‘.

According to research from Contact A Family, I am one of only 16% of mothers of disabled children who are in paid work, compared to 61% of mothers with typical children.

Women with disabled children, and let’s face it, it is pretty much always women rather than men, are careering out of the workforce at an alarming rate.

And why?

  • The unavailability of suitable childcare for disabled children.
  • The lack of school wrap around care and school holiday care for disabled children.
  • The chaos of medical, health, social care and other appointments that the NHS and local authorities are failing to co-ordinate effectively for children with multiple and complex needs.
  • Cuts in already too sparse respite care and short breaks for disabled children. And the hilarity of the fact that local authorities will allow families to use these services to ‘have a break’ but we are precluded from using them to enable us to work – to bring in an income, pay the bills and to support our families. So, for many families, the cycle of dependency on the state that they don’t want continues.
  • Unavailability of appropriate schooling – The BBC revealed last week in their #BBCsend focus that more and more parents of disabled children are being forced into home schooling because the appropriate schooling for their child’s needs just doesn’t exist.
  • Inflexible employers who do not acknowledge that both men and women have a role to play in child care, particularly when there is a disabled child in the family.
  • A lack of understanding by employers of carers’ needs and rights in the workplace.
  • No provision for paid carers’ leave.
  • Tiredness. Caring for a disabled child often means broken sleep, heavy lifting and managing behaviour. Without adequate support, this can leave parents with very little else left to give.
  • Ill health. Disability and complex medical needs come with a great deal more time spent in hospital than most.

It’s a complex picture, but certainly the first eight items on the list are surmountable with changes to the law and education, health and social care systems to support us.

It might sound expensive but cost analysis carried out for Working Families by Oliver Wyman showed that even just one small change in employment law – a right to adjustment leave for the parents of disabled children – could result in a potential annual net gain to the economy of up to £500 million.

Working Families wants to hear from parent carers about their experiences of combining work and caring. It will help them to campaign to help more parents to get into or stay in paid work. The more evidence there is, the louder the voice.

If you are a parent carer who works, or who wants to, please fill in their survey by 13 December to have your views included.


The hare, the tortoise and the mountain. A true story.

The hare, the tortoise and the mountain. A true story.

I should have heeded the warnings. Listened to my mind when it was racing at 3am for the hundredth night in a row.  Listened to my body when it creaked with exhaustion getting out of bed at 6am to start another day. Listened to my heart when it beat hard and fast as I rushed from one place to another wondering what I had forgotten this time. Listened to my voice when I snapped at my little girl for taking too long to brush her teeth in the morning.

But I didn’t. Because I didn’t want to hear it. I didn’t want to feel it. And I didn’t want it to be real.

Because as women we are supposed to be able to do everything, right?

I wanted to prove that I could. That against the odds I could still be a high achiever with a fulfilling career, hobbies I enjoy, a comfortable home and a happy family life. I wanted to prove that I could do all that while also caring and advocating for my disabled child and others like him as well as ‘living the dream’ a la Coast Magazine by the sea and holding the fort in one piece while my husband works away.

That I could take in my stride juggling school runs and homework and changing and feeding and administering meds and chasing appointments and test results and worrying and worrying over whether the latest chest infection or seizure would see us hospital bound again, while maintaining a professional and super productive work life in my job that I love.

And keeping house. And remembering to fill in the ticket requests for the school play on time, ballet and PE and swim kits and guitar sent in on the right day and party invitations RSVP’d.

A race against time every morning to get us all up and out the door, clean, dressed and fed. Coffee. To school on time. Traffic. To work. Coffee. Try to be professional and brilliant. Supercharge every minute with mindblowing feats of productivity. Squeeze more out of every day than should be possible.

But now it’s 5pm and it’s nowhere near all done.

Traffic. Traffic. School pick up just in time. Petrol pit stop and spelling practice in the car.


Children fed. Pyjamas on. Meds given. A quick smile and a cuddle. School bags emptied and filled. Post opened. Outfits ironed. Cats fed. Meals planned and bought online. Bins emptied. Piece of dry toast and some chocolate eaten for dinner. Feel my back twinge while I carry a growing boy up to bed.

“How many more times can I do this?”

Sitting in a dark bedroom every night while my anxious seven year old finds every reason not to let me leave or to go to sleep. She fights it. In the end, she sleeps. I creep out. Quick tidy up. Dishwasher loaded, floor swept, counters wiped, dryer emptied, laundry folded. Letters from the hospital read and filed. Emails to the adaptations manager, the social worker, school, a campaign group or two.

Work emails caught up on. A work project finished off in the quiet that only an evening alone on the sofa can bring.

“How many more times can I do this?”

Tweets tweeted. Sometimes about gin and sunsets. Usually about loos.

Worry about how we will ever go out as a family when we can’t change Orange in the boot of the car anymore and there are fewer bench and hoist toilets in the whole of the UK than there are normal loos in Wembley Stadium alone.

Realise I can’t fix that overnight and instead end up reading an article about terrible care homes in Cornwall and worry about Orange’s future. Wonder if I can live to 120. Realise I can’t and that I definitely won’t if I keep eating dry toast and chocolate for dinner. And worrying.

Worry some more. Blank out the worry by scrolling through Facebook, Twitter, Instagram, mumsnet and repeat. Social media oblivion.

Sleep. Perhaps.


I had come to think that this was normal. I had also come to think that if I couldn’t also fit in shifting three stone with an intensive fitness regime and clean diet, expanding my mind each night with the latest Ted-Ex talks and Booker shortlisters while also trying to write my own, being a solid support and confidante to those around me in their times of need, giving back to the communities in which I am a part both in the flesh and online, and renovating and decorating our tumbledown house into this schedule, that I was a failure.

In a word, lazy.

I had heard and read too many times that all working parents face the same challenges and come to believe that I should just be able to get on with it without complaint and without dropping a ball. Because that’s what I thought the world tells you it’s possible to do and that if you can’t, you are somehow second rate.

That if I felt tired it must be because I am a weak individual and need to toughen up. That if I felt sad it must be because I am entitled and ungrateful. That if I found something hard it must be because I am stupid or lacking in sheer determination and grit that others seem to have.

That if I read enough motivational self-improvement books and stared at feel-good Instagram posts I would find my way to the top of this mountain.

Because anything’s possible, if you strive hard enough, right?

But this week I have realised that I have been trying to sprint up the mountain. And sprinting up a mountain gets you nowhere fast, other than altitude sick.

On Thursday, that’s exactly what happened. A difficult conversation at work that I would otherwise have taken in my stride tipped me completely over the edge.

For the first time in years I actually cried. And then I couldn’t stop. An avalanche on the mountainside that threatened to bury me alive.

The irony of this occurring inside a mental health unit at work did not escape me. But in fact, now I am grateful. Because it shocked me into realising that I need to slow down from that sprint if I am ever to get to the top and enjoy the view.

To remember that the hare did not win the race, the tortoise did. And that this is not a sprint. It’s an ultra-marathon.

I was never any good at long distance running at school. I’d always start too fast and get puffed out past about 400 metres. I have always been the hare, never the tortoise.

All through my life at this point I have given up and started again. Abseiled down the mountain to try a different one instead. Run to a different start line to sprint along another track.

But this time I need to find the right way to keep going. Not just because there is no choice but because I also want to.

I need to have faith that I’m in the right place, with the right people, doing the right things. Because in my heart, I know that’s true.

And so I need to adapt my pace. While I am pretty terrible at long distance running I know I can get there in the end if I slow right down.

Even when there are steep hills to climb.

The times I have tried to run since moving to Cornwall have taught me that. If I try to be the hare I never make it even half way up the hill out of the village. The hills here are steep but the views from the top are breathtaking. I have learnt that the only way to get there to enjoy them is to be more tortoise. To jog or even to walk before I sprint.

And from time to time I know I have to seek a little rest and sometimes shelter along the way. To take refuge from the wind and rain or simply to take a breath and enjoy the surroundings.

So as a new week starts I will try to slow down in the knowledge that this will help me get to the top of the mountain, not hinder me.

Because if I don’t, I will fall off a cliff. Thursday showed me that the edges really aren’t all that far away.

Thank you to my husband, my boss, my team and my friends Lucy, Ali, Effie and Alex for listening and showing me it’s ok to say you’re not ok, that talking about it is a good thing, and  that trying to be superhuman is stoopid. 





And this is why we do

It’s been a busy week. A very busy week. Which is why it’s taken me until Friday to sit down and write about some awesome news we received on Monday.

You might remember that last year I went to Westminster along with Stacie Lewis of Mama Lewis fame, Hannah Postgate from Rosy & Bo and Mr Boo’s mum from Premmeditations to assist with the all-party Parliamentary Inquiry into childcare for disabled children. We gave evidence to testify for our experiences of trying, and failing, to find appropriate and adequate childcare for our children, who all have different disabilities and care needs.

We made suggestions for what some of the solutions might be to help enable parent carers (and particularly mothers) to be able to work. For many of us being able to work isn’t simply a ‘lifestyle choice’ (as some of us have been told by the local authorities who are supposed to support us), but it is a financial imperative.

As it is for most families.

Our needs and desires to work are no different because we happen to have a child with disabilities. And yet finding childcare is, all too often, impossible because providers are often not set up to cater for individual needs or, if they can and are willing (i.e. gold dust!), the cost is prohibitive to all but the extremely wealthy.

It was a privilege to be able to take part in democracy in action and to converse openly with the MPs and peers involved in the Inquiry. My eyes were opened to a hugely productive part of our political system that we just don’t see via the media lens which is so often focused on the negative.

The Inquiry led to the launch of a report of recommendations for resolving the issue of childcare for disabled children. But, well, what next?

How does this report translate into real change?

Through continued campaigning and pressure on decision makers.

Recently the ‘Counting the Costs’ campaign by Contact a Family was particularly hard hitting in its openness and recognition of the enormous additional costs associated with having a child with disabilities – and therefore the additional imperative on families with disabled children to be able to provide an income for themselves.

And the hard work is starting to pay off.

It’s incredibly early days, and with a General Election just around the corner there is still a huge amount of work to do, but on Monday came a fantastic piece of news.

The Government has decided to introduce legislation to double the maximum amounts that parents of disabled children can pay in to their Tax-Free Childcare Schemes, in recognition of the higher childcare costs that parents of disabled children face, all too often making childcare massively more expensive than the salary it would enable a parent to earn.

Here’s the lowdown from the Government consultation response:

“Representations were made during consultation that additional support should be provided for disabled children in view of the generally higher childcare costs their parents can face. Similar comments were also made during the Bill’s Commons Committee stage when the Exchequer Secretary to the Treasury made a commitment to consider this matter further.

Having considered this, the Government has decided to introduce legislation to increase the maximum amount that parents of disabled children can pay into their childcare accounts, in recognition of the higher childcare costs these families incur. For accounts for disabled children, the maximum payment for a standard three month entitlement period will be doubled to £4,000. This means that a parent with a disabled child will be able to pay up to £16,000 into their childcare account per year and receive top-up payments of up to £4,000. This will be achieved by amending section 19 of the Act through a separate statutory instrument.”

And for the geeks among us the full Government consultation can be found here.

This is a very important first step on the path to levelling the childcare playing field. And it opens a window for further change to address the still significant challenges, some of which I will recap:

  • Only a quarter of local authorities say they have enough childcare to meet the needs of the disabled children within their locality.
  • Almost half of parent carers cannot access the 15 hours preschool education to which all children are entitled.
  • Childcare provision is often completely lacking in its ability to be inclusive for disabled children, either through lack of understanding of what can and should be done to allow disabled children to join childcare settings, or through lack of adequate specialist support from the local authority to provide training, resources and adaptations.

There remains an expectation among local authorities that parent carers of disabled children don’t (or perhaps shouldn’t) work. It is this that is all too often so damaging and it is this that urgently needs challenging if we are to make headway in enabling parent carers to fulfil their legal right to work.

We are lucky in that we live in an area where the local authority is willing to do things differently, and prides itself on providing good quality support to people with disabilities and their families, and yet even here, for our own part, we are still reliant on family to provide after-school help that enables me to keep working. Without this, we’d be in seriously dire straights.

There is still an enormous amount to do, but we pause for a moment to celebrate this small but significant win.