Parent carers: the hidden stress epidemic that no-one is talking about

Parent carers: the hidden stress epidemic that no-one is talking about

Last year, I learnt a lot about stress. The hard way. I am now almost 12 months into recovery from ‘burnout’. Not an official medical condition in its own right, but the symptoms most definitely are, with anxiety and depression sitting at the helm.

As I sat across the desk from the doctor in occupational health, the list of ‘risk factors’ for work-related stress that he read out was like listening to my own job description. As it actually was. Not the official version sitting somewhere in an HR file.

But as I listened, I realised that the very same risks at work that had tipped over my ‘stress’ into ‘mental health problems’, were lying in wait for me at home too.

Double whammy.

Nowhere to rest, recover, or top up the tank.

Being a parent to a disabled child is one of the most rewarding experiences of my life. He gives nothing but love and joy. But as parent carers the systems we have to negotiate and the situations we have to manage can be devastating for our mental health.

While employers have a legal duty of care to protect their employees from the damaging effects of unmanageable work-related stress, there is no similar protection for carers.

There is no big red button to press when stress becomes overwhelming. No solution offered, bar anti-depressants from the GP. The number of parent carers on long-term doses of anti-depressants must be staggering.

But anti-depressants should not be the answer to a system that all too often is the primary source of stress for parent carers. Amongst my own parent-caring peers, major life trauma aside, it is the systems delivering health, social care and education, not the role of caring itself, that are the cause of the most tears, frustration and often desperation.

Being technical and academic for a moment, there are six clear areas of risk for mental health damage through stress that the Health & Safety Executive has identified which employers must mitigate, or invite a law suit. Every one of them with red flags all over the place for parent carers too.

“Not able to cope with the demands of their work”

Caring is a 24/7 job. A physically, emotionally and mentally tough job. One that comes with a daily waterfall of paperwork and a team of dozens of people to manage, chase, meet and feed back to. Even the ‘short break’ that is supposed to come with a few hours a week of local authority funded carer time (for those who have fought for it), comes with the requirement to set up as an employer, recruit a carer, organise their life support & epilepsy training, hire and manage an accountant, report monthly to the local authority with timesheets, expenses and bank account balances.

Then there is the deep frustration of living your life amongst an NHS referral and appointments system that is not set up to adequately cope with long term or complex conditions. Or even to share information across trusts. Where errors are made, reports have to be chased and often corrected. Where appointments you have had to chase for months to get are cancelled by the hospital and then you are sent a rude letter because you ‘Did Not Attend’. Black mark to us… Back to the bottom of the snakes and ladders referral system we go.

“Unable to control the way they do their work”

Unwieldy bureaucracy does not lend itself well to any feeling of control. There is no sensible grouping of appointments and often little ability to dictate when and where they happen. Decisions about critical aspects of life like where your child will go to school, or where they are cared for when not at home are made by panels of people you have never met, and who have never met your child either.

We live our caring role atop a perpetual fear merry-go-round that we cannot control, of social care packages being reviewed every six months against a suffocating backdrop of ever increasing local authority cuts. We always have to be on our game, anticipating the next threat of a reduction or removal of support on which our child’s wellbeing and our ability to cope depends.

“Don’t receive enough information and support”

Bamboozling reports from medical professionals and social workers. Boxes filled but no real answers given. If you don’t fit the common mould, or a particular pathway, there is a cavernous Grand Canyon size lack of relevant information and support if you are the parent of a child with a disability or complex condition. Local authorities and the NHS are champions at over-producing reams of information <see ‘Family Information Service’>, but finding the relevant and useful stuff, well, good luck.

“Are having trouble with relationships at work, or are being bullied”

All too often relationships between parent carers and the local authority or NHS staff who are supposed to support us can be extremely testing. When relationships are good, they are great. When they are bad, they are incredibly damaging. I have witnessed friends of mine being bullied by social workers and left floundering in the most impossible of circumstances. To the point of the most severe impact on their mental health and that of their families.

“Don’t fully understand their roles and responsibilities”

There is no life manual for being a parent carer but there is an endless stream of people who come in to your life with their own views on what your job is. I have dined out too many times on my own personal anecdote of the early support worker who quizzed me on the exact number of minutes of physio I was doing with my son daily in the same sentence as telling me that ‘my decision to work was a lifestyle choice’.

“Are not engaged when a business is undergoing change”

The zig-zag boomerang rollercoaster of change in every aspect of health and social care impacts us constantly. When you interact with many multiple services week in week out, it can leave you feeling lost, spinning, concussed.

Many of the parent carers I know do their damnedest to keep on top of service change, attend public meetings, respond to consultations and help progress in the system as much as we can. But it’s not always easy and all too often we have to fight for it. Local authorities will say they have ‘engaged’ if they send a poster about a proposed service change to their local parent carer forum. The same forums that don’t promote themselves and that most parent carers aren’t members of.

No escape

When my health was compromised by a job that ticked all six of these risk factors, I left. But the jobs that come with being a parent carer aren’t jobs you can just walk away from. We cannot choose to engage with a different local authority or a different NHS. Because there is no choice. It’s what there is. We are bound to them, Hotel California style. There is no way out.

And while I can do my utmost to encourage and support change, and to highlight and celebrate good practice when I see it, I am genuinely fearful for both my own mental health and that of every parent carer in the country who has to accept these risk factors into their lives probably forever.

Who is looking out for the carers? Who is accountable when a parent is exposed to these risks not by an employer, but by the health and social care system that is supposed to support us?

Where is the big red flag that highlights somewhere in the system that a parent carer is at risk of being shunted face first into overwhelm? Until they show up at the GP with symptoms of anxiety and depression?

Because if you can keep the carers going, you can keep the cared-for going too.

 

 

Because in real life there is no DIY SOS

I’ve never managed to get through an episode of DIY SOS without crying. Between the personal stories of the families for whom daily life at home has become such a struggle and the transformative work of Nick Knowles and his team, I’m damp eyed and lumpy of throat from the start.

Beneath the wonder though, at their clever design and heartfelt efforts, is a backstory.

Behind the handpicked selection of families for whom DIY SOS is a savour are thousands of families who need their help just as much.

The families you see on DIY SOS are not such a rare commodity that the problem of accessible housing can be solved by the benevolence of a TV production company alone.

In the real world, the material side of the TV screen, there is no ready-made supply of suitably adapted housing for those who find themselves disabled or who have a disabled child.

Moving house, even to a bungalow situated on the most pancake flat of plots, doesn’t solve the common problems of doorways too narrow for wheels, space to be able to get in and out of the bath or in to bed using a wheelchair, ceilings strong enough to take a hoist, a flat driveway for an adapted vehicle, and a home big enough for the whole family and all the adapted equipment, plus perhaps carers too.

Homes like this just don’t exist in the British housing stock. When we were facing the prospect that our home may not be affordably or practically adapted for our little boy, we looked, and Rightmove served us nothing.

Our first attempt at adapting our home, working with the Disabled Facilities Grants team from our local authority, didn’t go so well. Two years of lift breakdowns, exposed live electrics in the lift shaft and a garden with a newfound post-apocalyptic wasteland design, cracked oil tank as the centre piece, left us stuck.

Both lifts stuck at half mast, luckily with nobody in them

Often stuck in lifts.

Permanently stuck in a home we could now neither live in safely nor sell.

So we stayed put and hoped, with our creative thinking hats firmly planted.

The difficulties we faced with the Disabled Facilities Grants process are not unique.

Of the families we know who have used DFGs to help them adapt their homes, at least half of them have had to have the work redone because of poor design or workmanship.

The grants, while seemingly generous to an untrained eye, don’t touch the sides of the real cost of adapting a home.

The design process, led by local authority teams who often have little experience of complex adaptations and limited knowledge of the equipment and supplies available, can be fraught with difficulty.

At one point, plans were drawn up to site a through-floor lift in the middle of our kitchen, in front of the fire place, while outside a zig zag concrete jungle had already been created.

Often, families are told they must sacrifice their entire and only reception room to house a lift or a downstairs bedroom, leaving nowhere for the family to sit.

Often, hospital style plastic flooring in the home is pitched as the only acceptable option by local authority teams. Not because it is the cheapest. But because the process is rushed and ill-thought through, having not progressed from the ‘medical model’ era of disability (google it, but only if you’re not feeling vulnerable).

Often, ugly metal ramping is used in and around people’s homes when non-slip tiles or deck boards would be just as safe and sometimes cheaper.

Often, families are left to manage contractors they have had no involvement in choosing, that have been appointed by the local authority, with ill-conceived plans and vague budgets, leaving them exposed financially as well as causing damage to their homes.

Others are told their homes cannot be adapted at all and they must move which, all too often, isn’t true.

To be able to stay in your own home when you’re juggling the perpetual curveballs that disability brings means that some small thread of the narrative of your life can remain constant.

To be able to stay in your own home and have it adapted sensitively, without whiff of industrial wasteland nor hospital, is life enabling.

Over the last three years, we have worked with our local DFG team to help improve the process. Not just for us but for other families in Cornwall too.

I can say that lessons were learned from our first round of disastrous adaptations and the Cornwall DFG team has gone on to improve the service they offer to one that is becoming more family-centric, transparent and supportive.

As a result, four years after we first started adapting our home, we have just finished.

Our garden has an outdoor lift, to get our little boy safely from the house to the car, with two flat level play areas for him to access.

Accessible non-slip composite decking

The whole garden is still a useable family space, with enough room for us to grow things, barbecue, lounge and do gymnastics to our hearts’ content.

Wheelchair accessible artificial grass play area

Incline wheelchair lift from Cama in Denmark

 

 

 

 

 

 

 

 

 

 

 

 

 

The lift we chose was bespoke built, allowing us to have a safe way of transporting a wheelchair passenger in and around the garden without compromising on space.

It is marine grade, to help it survive the salty sea air where we live.

Inside, we created our own design and plan for the adaptations, which was then tweaked and tested by the DFG team to make sure it was viable.

Accessible bedroom plan

Pollock through floor lift

Since none of us would have benefitted from having a through-floor lift sited in the middle of the kitchen, we tinkered with the floor plan both upstairs and downstairs which meant we have been able to site the lift in its very own hallway space, tucked neatly away next to the utility room.

Tweaking the floor plan and moving the family bathroom meant we have been able to create an adapted en-suite for our little boy, with his own bathroom including a bath with a built in hoist seat and a riser to help carers to wash him comfortably.

Adapted bathroom with hi-low bath and electric hoist

 

Adapted en suite bedroom with wheelchair lift

Of course, no adaptations ever come cheap. Even bad ones.

For us, the DFG has covered the cost of the lifts and the bath and not much more. We have had to take on a significant amount of debt to fund the work and may be working until we die to pay this off. The DFG team has had to pump in additional resources to fund the rectification of the mistakes made the first time around.

The end result though, is a home that our little boy can stay in. A home that we can all live in as a family, that he can remain a part of and that we can enjoy in as normal a way as possible.

The brutal alternative would be for him to go into year-round residential schooling, at a vast cost to the state, while we waited for the gold dust that is adapted social housing. Which of course, none of us wanted.

Instead, we are able to stay in our own home independently, at a significantly smaller cost to the state, as well as keeping our family together and maintaining a sense of control over our own lives. And dignity.

That’s the power of a well-planned disability adaptation.

Who it’s all for

 

What are we trying to fix? Mothers, fathers, or work?

What are we trying to fix? Mothers, fathers, or work?

Last week, working dads hit the headlines. And about time too.

As the Women & Equalities Committee announced its findings that working dads are being failed by workplace policies, radio and tv news were alight with the talk of paternity leave, with the usual comparisons to how things are done in Sweden, the apparent holy grail of work life equilibrium.

In our own lives, we tiptoe along a tightrope of constantly competing family and work commitments. While I suspect it was easier for me as a mother to request some form of flexible working than it would be for most fathers, ultimately, employment still failed me. Twice.

Last month’s mega trends report from the CIPD showed that the number of people choosing self-employment just keeps on rising. The growth being driven predominantly by women.

Have women in the UK all of a sudden got the self-employment bug?

Or has employment failed them too?

As an economy, we have invested huge time and resource in changing legislation and workplace culture so that it can be more ‘motherhood friendly’. And yet women are leaving the workforce in ever increasing numbers.

Something just isn’t working.

Old school stuffed-shirt rhetoric would say it’s us women. We don’t work as employers need us to. We ask for too much and give too little in return. The men, after all, are the reliable mainstay of the workplace. Rarely asking to work flexibly. Never leaving early to attend a school play. Never taking a day off at short notice to care for a sick child.

Except that’s just not true.

Today’s generation of dads want more than any other in recent history to be in equilibrium with their work and life so they can play an equal part in raising their children and running the home. All the dads under 40 that I know, including, I am glad to say, the one I am sharing parenting with, are doing this already, work flexibility or no flexibility.

So after decades of trying to fix women in the workplace, and beyond maternity legislation arguably failing, we should now try to fix the men?

Sarah Jackson OBE, Chief Executive of Working Families doesn’t think so. And I agree. The charity’s most recent Modern Families Index showed that men are already making compromises. Turning down job opportunities and promotions just as many women do, in order to maintain some semblance of balance.

Except it’s not working. Because we are trying to fix the wrong things.

Parenthood doesn’t stop at the end of maternity or paternity leave, or when our children start school. It is a lifelong commitment.

Focusing on equalising maternity leave and paternity leave ignores the enormous elephant in the room that, for the most part, conventional employment and family life are pretty incompatible.

People string it together of course. Because roofs and heads dictate that they have to. Often at the expense of their own physical or mental health and wellbeing, or that of their partner, or children.

Equalising maternity and paternity leave does not help the family with a teenager having an anxiety crisis. Or the grandparent whose son or daughter has a child with a long term health condition or disability and desperately needs an extra pair of hands. It also doesn’t help the son or daughter whose own parents are ageing and may need daily help because of frailty, dementia, or cancer.

This is life. It’s big and messy and complicated.

It happens to all of us in one form or another and if employers want to maintain the quality of their workforces, they need to start reshaping what they do and how they do it.

What we collectively need from employers are employment and career opportunities that are flexibly and genuinely open to people at all stages of their lives, so they don’t have to stop when another part of their life demands pole position.

But bosses haven’t caught on. According to recent figures, less than one in ten ‘quality jobs’ (paying £20,000 FTE or above) are advertised as being open to flexible-working options. This is trapping millions of employees who are either unable to progress their careers on a flexible basis or are locked-out of the jobs market completely due to their need to work flexibly.

So what do we do?

How do we fix work so that employment and family are not an either/or.

As Sarah Jackson said, “There is not one type of job that couldn’t benefit from being flexible in some way, even an A&E consultant can job share.”

Creating a flexible and supportive workplace can come in many guises.

Innovative shift pattern planning.

Annualised hours.

Unlimited leave as seen at Netflix and Richard Branson’s Virgin Group. Paid carers’ leave as recently announced by Aviva. These are the shining lights of hope in an employment market still hellbent on bums on seats nine-to-five.

These are the companies that have realised just in time that there are real risks to business in employees choosing to resign in search for a better work-life fit. These are the companies who have realised that flexible working is not a bolt-on to solve individual employee problems one by one, it’s about developing a culture where an organisation’s people are in control and are measured on results not presenteeism.

Parenting and caring are a life reality. Work is a requirement to pay the bills and for most of the population still, that means being employed.

We shouldn’t have to choose between the two, or be forced into taking our chances in the self-employment market if we don’t want to, simply in order to protect our own health and wellbeing and that of our families.

 

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.