Carers: the noise is deafening but who is really listening?

“My greatest wish is to have another 20 years of life so I can continue caring for my daughter”

Brenda Quick, age 92, who cares for her adult daughter


There’s an inescapable story pulsing across our screens and pages this week. And no, it isn’t Brexit, nor the Tory leadership fiasco. It isn’t even Boris’s hair.

It’s the time of year when stories like Brenda’s get told. Brenda, who is 92, and caring for her adult daughter who has disabilities. Isn’t she amazing? (more on that later)…

It’s a week where we witness NHS and charity communications teams fall over themselves to show how much they do for carers. PR calendar gold dust. Find the good news that shows how compassionate and people focused we are, clamour ‘leaders’.

Abruptly aglow with human stories of caring, twitter is swirling with carefully curated candid personal video stories, hard-hitting top ten facts you didn’t know about carers, gnawing tales of hardship and heart string tugging statistics. Much of it earnestly co-created with real life ‘unsung hero’ human carers themselves, providing content for organisations who next week will sit and analyse engagement figures, reporting back to executive teams on the completion of their successful campaigns.

The more generous of heart among newspaper journalists will also tick the box that says they did Carers Week. Celebrated carers and raised important questions about ‘who cares for the carers’. A welcome nod to diversity and compassion in the world amidst the noxious noise of everyday news reporting.

Brenda’s story is part of just one impassioned media effort. As The Guardian reports today, for the last three years, the Oxfordshire Family Support Network has been running a project supporting family carers of adults with learning disabilities.

Brenda, along with a cohort of other older adult carers, will this week have her portrait displayed around Oxfordshire, presumably to celebrate their contribution and raise awareness of the difficulties they face. Today’s Guardian shares a gallery of these carers and a snapshot of their personal stories.

Most who come across this story will, I expect, come away thinking they are super people, facing unimaginable hardship, that they ‘couldn’t do it’ themselves. ‘How do they do it?’ I hear, echoing in heads on tubes and trains and at coffee tables among liberal intelligentsia.

But in and amongst all the noise, the clattering and searing of human hardship that sits so uncomfortably with those who do not know it, do those who can change things for carers really know what they are seeing and hearing?

When I read Brenda’s story and see that, at 92, she hopes to live another 20 years so she can still care for her daughter, I don’t think ‘superhero’, I feel the urgent necessity that so many parent carers feel, that we MUST outlive those we care for because we simply cannot trust the system to do it for us after we are gone.

An urgent necessity fed by the unstemming tide of human cruelty within our care system. Winterbourne View wasn’t the first. Whorlton Hall won’t be the last.

This is a huge burden to carry. As one of the carers in The Guardian’s piece described, it can feel like a life sentence. A life sentence that no amount of coffee mornings, hashtags, placards held up by MPs pledging ‘support for carers’ nor celebratory photo shoots can quiet.

Caring for a vulnerable family member is an extreme privilege. But it is a privilege that can test carers to their absolute limits of physical, mental and emotional fortitude.

PR exercises to raise awareness about the role of family carers are not going to change that. But there are things that could. Here are my top five:

  1. Create a safe and compassionate care system that puts humans, not commissioners and bureaucracy, first.
  2. Introduce a health and care staff vetting system that relies less on paper checks like DBS and more on personality and psychological profiling.
  3. Reduce the appointment load: Evolve the NHS appointments system so those with chronic and complex health conditions and disabilities can be seen in multi-disciplinary clinics, where a single appointment is required and a single report is produced.
  4. Use technology to reduce the admin load: Create a truly joined up health and care system where NHS and care reports can feed directly into the Department for Work and Pensions, to reduce the paperwork load on claiming PIP, DLA and Carers Allowance.
  5. And while we’re on the subject of Carers Allowance, I’ll add my voice to those who have been calling for a fair rate of Carers Allowance for years and who continue to be overlooked and neglected.

The truth is, carers are not superhuman, as much as we often have to be.

We are simply stretched in too many directions, by the 24/7 responsibility of caring, the perpetual befuddlement and frustration caused by NHS and social care admin, the necessity of trying to hold down some kind of employment or income generation because there is no viable financial safety net to support us while we care, all on top of attempting to spin the domestic plates of everyday living.

No amount of coffee mornings, or carers support groups, or carers voice networks can ever make a true difference. Most of us can’t get there anyway, because we’re too busy, you know, caring.

If you are a decision maker in government, the NHS or social care, please stop holding up placards and posing for photos on social media. And maybe have a look at my ‘top five’ instead.


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 Рa right to adjustment leave for the parents of disabled children Рcould 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.