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.


4 Comments

  1. Ann Hickman 11/06/2019 / 1:17 pm

    “a truly joined up health and care system” would be amazing. An totally agree, Carer’s allowance is not only appalling, the earnings limit associated with it is also ridiculous!

  2. Steph Curtis 11/06/2019 / 4:28 pm

    I agree with everything you’ve written. Too many people want to show they care but not actually do anything about it. As someone who is now unable to work, the Carers allowance covers very little, and as you say, it’s impossible to get out to anything so a feeling of isolation quickly creeps in. Yet no-one is aware of me, sitting home, unable to live a life for me. I think that if registered as a carer with a GP, there should be some sort of check in at the very least, to make sure that the carers health, mental or physical, is OK. Then the second big issue for our family is making sure that the child with the needs is a priority; making sure the best way forward is found for them regardless of red tape x

  3. Lucinda 13/06/2019 / 10:20 am

    This is my worst fear, my constant nightmare that wakes me so many night. How can protect my boys forever. I would prefer to go through the grief rather than leave my boys to be tortured. It kills me inside when I think someone could be bad to them

  4. Julie Johnston 15/06/2019 / 2:17 pm

    Oh, joined up thinking and clinics would be great! (I once had to explain to a receptionist that the Peter Johnston who came up with the funny looking case number was indeed the peter who was in front of her. She’d just managed to get his genetics notes as well as his general notes!!!!
    I don’t want a pat on the back.
    I don’t want platitudes.
    I want people to understand that caring for someone isn’t easy and should be rewarded with a decent amount each month.
    I’m not greedy. Just a mum who’s looking after a 29 yo forever child, while falling apart with arthritis and wondering how I’m going to cope with a knee replacement that is badly needed

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