Category Archives: Carers

Carers, Covid19, disability, Helping the community, Uncategorised, Volunteers, Your councillor

Forget Carers Week – nobody cares

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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.

Care homes, Carers, Covid19, Government

Dominic Cummings and Staying Home

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26 May 2020

Dear Dr Coffey,

I wish to express my concern at the clear rift that is emerging between our government’s guidance on lockdown – especially as it gradually eases – and the strangely defensive attitude that senior members of the government are very publicly taking to Mr Dominic Cummings’ breach of this same guidance.
Surely, in a case of pandemic and lockdown, we really are “all in this together”.
As a shielded carer, I have not been able to see my significantly disabled daughter for eight whole weeks. (Since then I have seen her briefly, while masked). My anxiety has been extreme.
My husband, whose mother is in a care home suffering from vascular dementia, has had the triple whammy of only being able to contact her by phone for the whole of the same two months, knowing that she is lonely because his multiple daily calls do not register with her, and fearing for her safety within the home. His anxiety has also been extreme.
However we have both obeyed the governmental rules created (in part) by Mr Cummings because we believe in a common good and are prepared to play our part.
We are one family amongst thousands that you represent. There must be thousands of similar stories in Suffolk Coastal.
Mr Cummings’ behaviour and excuses – but more particularly, the clear desire of many in the government to believe and excuse him, diminishes the sacrifices of us all.
I feel that his attitude makes a mockery of the massive effort that this pandemic requires from the people of Britain. Please could you tell me whether we really are “all in this together,” or whether there are exceptions?
Sincerely
Caroline Page
Carers, Suffolk County Council

Pandemic-invisibility: Suffolk, Covid & unpaid Carers

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Despite the Covid pandemic ,it seems that Suffolk’s family carers remain officially hidden, and officially unsupported. In this county – as in this country – this is a disgrace.

A recent SCC briefing on the subject merely said: “One of the challenges at this time is helping carers to explore the options for having a care ‘back-up’ or contingency plan, should circumstances change and alternative care be necessary for the cared for adult.  While not new to discussions with carers, the prospect of carers knowing people in their network, or community is especially important during a pandemic of this sort. “ In other words: “Hop to it, Cinderella! Go find your replacement!”

Disingenuously, this  wording suggests that a full-time  unpaid family carer has made a positive career decision and  is actually in the position to form a strong support network within their community and to leverage it to the unlimited free care cover that the state has expected from them. I cannot tell you how angry this makes me.

So, who will elect to do this massive amount of care unpaid? How many senior members of county or country administration will come forward and publicly commit to taking over the unpaid, unacknowledged 24/7 care of an anonymous local resident with significant needs? Don’t all shout at once, eh?

Come off it! We all know it is not a realistic plan for the county ( or indeed the country)  to expect  unpaid carers to source other replacement unpaid carers to cover their own isolation/ sickness/death from Covid19 on top of everything else they do.To articulate this expectation is not only unrealistic, it is inappropriate in the extreme.

At the best it can only put extra stress on already over-stressed individuals. At the worst it might make them lose all hope. How will – how can – a sole carer looking after eg a spinally complicated quadriplegic do this? Or the elderly, physically frail, carer of a partner with dementia?  Or the unacknowledged child carer of a troubled adult?

We should be deeply disturbed that Suffolk’s message is that if you are a lone and unsupported carer, looking after somebody who is vulnerable because the state is not coming forward to assist, the county merely reiterates that it is this carer’s responsibility to  go out and find someone else to look after (for free) the person they care for (for love and duty).

This briefing is a distancing manoeuvre rather than practical help in a pandemic.  More, it is a gross abrogation of moral responsibility by authorities elected to safeguard our society.

Worryingly, Suffolk’s Plan B seems to be to tell concerned councillors “If you are worried about an individual, do report them to Home But Not Alone.”

But what about all those who are under the radar? I am not concerned about ‘an individual’. If I know about ‘an individual’ it is possible to provide support. I am worried about all those other individuals – the sole carer of a spinally complicated quadriplegic, say, the elderly, physically frail, carer of a partner with dementia, the unacknowledged child carer of a troubled adult- that we simply do not know – the ones who are home alone.

CarersUK estimates there were 8.8million unpaid carers in the UK in 2019: 13% of the population. That’s approx 100,000 Suffolk carers (possibly more as Suffolk has an older population than the country as a whole). Suffolk Family Carers confirm they only have 14,000 of these carers on their books – and this includes people like me, whose maximum caring responsibilities are currently reduced.

The state has no official method of identifying family carers beyond whether they claim Carers Allowance or not. But many carers are not eligible (students, pensioners, people earning more than £120 per week, children ,etc).  Within the unidentified category are many of the most vulnerable: lone parents of disabled children; hidden child carers of adults with poor physical or mental health or addiction issues; and older persons looking after older partners/spouses, both with poor health – and all of these caring 24/7. Such carers have increasingly frail support networks, particularly vulnerable to breakdown at this time. Many are living lives of quiet desperation.

In my own 20 years’ experience as 24/7 unpaid family carer, no elected body, either local or national, has wished to challenge or address these statistics because it leaves them obliged to recognise the magnitude of the underlying problem. (And deal with it. )They edge away like a cat that has inadvertently put its paw near something strong-smelling.

SO  can we do anything? I believe  we can! Suffolk  – at county, district, ccg and other levels, has various lists which would allow an overarching interest (should one exist!)  to piece together a patchwork index of vulnerable persons. No, not the 1.5 million shielded people  –  of whom I am one. We may be vulnerable  to covid, but often far from vulnerable financially or societally. The real vulnerable people. I  urge our county – as I urge our country – to go further and ask each individual parish to start at once to try and identify their f local hidden carers- house by house, street by street – and report back. We could ask  the media to get involved and make this a whole-county initiative. Better, a whole country one.

Many family carers are invisible behind closed doors. We must identify them, because otherwise, while our society is under its current great stress , they can literally be dying behind closed doors, unsupported.