In the last full council of the 20I7-21 electoral cycle, I proposed to Suffolk County Council that we create an “all unpaid carers opt-in“ database administered by the respected charity Suffolk Family Carers to help the unpaid carers of Suffolk.
The purpose is to ensure county targets support at those that most need it.
In the UK we literally have no exact idea how many unpaid carers (also known as family carers and kinship carers) there are in the country/county or what their needs might be. The last true numbers were taken at the last census in 2011: the #ONS will tell us in due course what the current figures are from this year’s census.
The estimate for Suffolk is around 164,000 – and the estimated 1400 carers in Woodbridge alone (!) have saved the state (eg us) £20million over the last year.
Let’s be frank, such carers will generally be happy to pass on getting the plaudits and claps that haven’t come their way – if they could get all the help and visibility they need.
Wonderfully, Suffolk Conservatives seconded this motion, and it was passed “by general acclamation” by all of Suffolk County Council. I am so pleased – because it was so badly needed!
My speech in full:
Colleagues, I am not going to read through our motion. It is self-explanatory.
Instead I am going to highlight some of the reasons why we are asking you to vote to help a crucial and often invisible group of Suffolk residents – our unpaid carers.
We’re extremely pleased that the Cabinet Member for Social Care is prepared to second this motion. Unpaid care is a issue that crosses all party boundaries.
We all know carers, many of us are carers, and sadly, any one of us, of any age, could either become a carer or someone needing care, in a heartbeat.
In this last year the pandemic increased the number of Britains unpaid carers by half – from around 9 million, to about 13.6 million giving us 164 thousand in Suffolk – 1400 in my small Woodbridge division. The figures are approximate because carers aren’t counted except in the census!
We know of sone. Some GP surgeries list them. The small percentage eligible for Carers Allowance are known, social services are aware of specific cases, Suffolk Family Carers has about 10% of the total currently on their books, but the large majority are known only to themselves and maybe a couple of family members or friends – carers who are children caring for adults, elderly couples with one caring for the other, people in anxious or vulnerable situations, people who are simply scared of ‘the council’ – most of these fly under the radar.
Additionally many do not see themselves as carers until they recognise they need to plan for every moment’s absence.
We need to know them ALL.
We need to know them because we need to be able to help them:
The life of many unpaid carers is anxious, impoverished, and vulnerable to both physical and mental health issues. Caring is hard to fit around earning, the Allowance is a pittance, and the stresses of caring impact on both the body and the mind.
Caring is so far from simply patting a hand or making a cup of tea. Yet we rely on carers to carry our NHS and social care on their shoulders. Those 1400 carers in Woodbridge alone saved us around 50 thousand pounds a day – that’s 20million pounds last year.
The cost of replacing an unpaid carer is extreme.
We REALLY need to offer them targeted support to prevent burnout, or breakdown or tragedy.
And how can we offer targeted support unless we know who to target.
Many carers live lives of quiet desperation behind closed doors, invisible even to their own neighbours. Their support us often fragile and unofficial. This makes it easy for things to fall apart when any crisis happens. I think all of us can think of local cases which came to light during the pandemic which showed how much Suffolk was relying on unrecognised care. In Woodbridge, our emergency response group have ended up as quasi carers for several people whose fragile unofficial network was not covid proof.
We also worry very much about child carers, some primary school age, many bearing an overwhelming load they can barely understand and seldom disclose. How have they been identified during this last year? We must find a way of helping them – for their own futures as well as their present needs.
Our motion suggests how we start to answer these issues – via the respected Suffolk Family Carers charity working with other interested partner organisations.
I’m asking you to vote to support them in expanding their database to cover all carers within Suffolk -with initial information to be drawn from community organisations, schools, and all GPs, who must offer carers registered with them the option to register on the countywide database. We would be trying to reach every possible carer so as to, for example, target specific support in a pandemic, improve communications in general, and enable us to consult with carers about carer-specific policies and issues.
This would make Suffolk a national beacon of good practice. More importantly, start to solve a huge problem which we all share and which we know we have to solve together.
Colleagues I commend this motion to you.
Support for Suffolk carers can be found from Suffolk Family Carers 01473 835477 www.suffolkfamilycarers.org/
June 2020. Last week – National Carers Week – passed with even less than its usual muted tootle.
Not sure why. The pandemic has meant that unpaid carers are busier, lonelier, more stressed, less supported than ever. Maybe everyone was clapped out for the ‘real’ carers – you know, the ones we pay.
Carers Week is generally when those lucky enough not to be carers briefly acknowledge their plight, and then forget it again. This year we didn’t even bother to remember. The official hashtag #carersweek is matched by the unofficial #realcarersweek. Have a look: it is very illuminating. I’ve spent twenty years watching paint dry when it comes to raising awareness of the very existence of unpaid carers and their lives. It’s dispiriting.
Putting national apathy aside (and it was total) all I can imagine is that everybody in Britain – including our Prime Minister – is unaware of the void of difference between care workers (staunch, hardworking, poorly paid – but, crucially, paid) and unpaid carers, whose invisible lives are defined by high levels of ill-health (both physical and mental), poverty, stress and isolation. Carers are seven times more likely to be really lonely compared with the general public. Carers are in effect slaves, held hostage by love, saving the state billions. Many work 24/7 without a break for months, maybe years at a time. Unpaid carers have no pay, no sick leave (let alone sick pay), no holiday (let alone holiday pay), no employers pension contributions
Suffolk doesn’t even know how many unpaid carers it has – old couples locked behind doors, children worried sick that a parent may be collapsed when they get home, a sibling trying to keep a family member safe.
We do know that we have about 100,000 of them, because unpaid carers make up 13% of the population.
This year, lockdown gave everyone a sudden taste of being shut up involuntarily, unable to get out, unable to contact friends, losing livelihoods, careers, opportunities, very stressed, very concerned, very worried. And, like becoming a carer, it happened in a flash.
I am calling on the people of Suffolk – and those who represent them – to think what it would be like being locked down for life – for love. Without all the food parcels, the zoom quizzes, the sudden support networks and all the initiatives that are on offer now that sudden loss of of so much has hit the zeitgeist.
Clap for the carers? “Oh, of course we mean you you too.” Clap for no pay, no sick leave, no holiday, no work-related pension, no union representation – because you only work. You are not counted as workers.
Are the carers charities finally going to lobby to make real improvements to unpaid carers lives? Lobby for pay, sick leave, holiday entitlement, work-related pension contributions (because, sure as hell, carers work their socks off)? £67 Carers Allowance for the few, and a dismissive pat on the head for all is simply not enough!
This is the time to admit to and take responsibility for those hidden 100,000, many of whom – appallingly – we still can’t identify, still living lives of quiet desperation behind closed doors, whether the lockdown eases or not.
And having -finally – taken responsibility for them, we must be morally obliged to do something to make their lives better.
May 2017: Carers Week came in balmy weather. Otherwise it was like any other week. My daughter and I picked elderflowers and made 2 gallons of cordial. In between elections and my full-time work and the emergency appointments with London specialists. And her multiple, scary, uncontrolled, unpredictable seizures.
She and I are very much together, poor soul, whether she likes it or not. She is nice to me about this – but it must be a dreadful burden to be in your 20s and have your mother so very much in your life. But she cannot be left alone.
It’s nearly 17 years since the day she dropped like a stone as I baked her birthday cake and in a blink of an eye we went from two real people in our own right with lives to lead and places to go, to carer and cared for: symbols, stereotypes, political footballs -people who are somehow less important, less valued than others. We both lost friends, lost caste, lost identity. We were lesser people.
Like most family carers, I started out bewildered, unrecognising, waiting for things to return to ‘normal – a day that would never come. Indeed it was years before I realised I was a carer – and that as well as providing help I needed help myself.
For, make no mistake, being a family carer is hard. Being ‘on duty’ – responsible for keeping someone alive – 168 hours a week, every week, is quite as dreadful as it sounds. After a while, you have difficulty with everything: working, sleeping, socialising, existing.
Worst of all, you become invisible. Your work as a carer takes place in isolation, and though invaluable, is not valued. In fact the government refuses to call it work (though the cost of replacing you if you fall ill suggests the reverse). A family carer has no workmates. If you manage to keep a job on top of caring – and it’s no joke as a full-time carer – your colleagues may disregard you, disrespect you – even (obscurely) think less of you. (It’s not like caring is work is it?) People forget about you, either by accident or design, you lose your place in social plans, in activity groups, in parties. You may even get called a killjoy because you can’t leave the house!
So of course, you are lonely. And no, you don’t get used to it. And you don’t get used to how philosophical others are about your life. That they are not more concerned on your behalf. But they are not.
To make this worse, we family carers are often not seen as people in our own right but are defined by the condition of the person we care for: we are carers for dementia, for ASD, for Parkinsons, epilepsy, stroke, etc.
Strange, as our own problems as unpaid carers are easily identifiable and universal: exhaustion, invisibility, stress, worry, loneliness, poverty, despair. Family carers have twice the suicide rate of non carers. Go figure.
How to help? Carer charities set up initiatives to encourage carers to be ‘better carers’. Er.. why? What is really needed is for society to be better TO carers. I bet you it would lead to an immediate improvement in carers’ mental health.
1 in 10 people in the UK is a family carer – and the numbers are rising. There are several hundreds in Woodbridge and Melton alone. A lot of us – particularly those of working age -are women. In fact, by the time a British woman is 59 there is a 1 in 2 chance that she is or has been a family carer. A man has to reach 75 to have the same odds! Think of that, chaps, if you want to complain about WASPI women.
So not just in Carers Week, but any week, why not think if there’s someone – a friend, a neighbour – who has disappeared from your view– and ask whether they are living a life of quiet desperation, sitting at home with the person they love and care for?
And if they are, don’t say – as so many people have said to me over the years -“I won’t come round/phone/make contact because I know you are busy.” That is not thoughtful, it is an alibi. Instead, instead why not invite yourself round for coffee? a chat? bring a bunch of flowers? a picnic? spare some time?
Spread a little happiness! It will really be appreciated.
Support for Suffolk carers can be found from Suffolk Family Carers 01473 835477 www.suffolkfamilycarers.org/