We need a break before we are broken: Message from carers to the Government

 

Is it a sign of age that when one reads deeply touching accounts of caring, tears fall unbidden?

I’ve been catching up on last month’s Carers’ Week reading some accounts on the online version of The Guardian of how looking after a loved-one can be both hugely rewarding and devastating mentally and physically.

And then of course, there’s the financial challenge of it all.

And the economic difficulties look set to get worse, well at least if the forecast by the Carers’ UK study is correct. Changes in the benefits system will mean they face £1 billion of cuts over the next four years, according to the year-long investigation.

Those who care for someone for 35 hours or more each week are currently eligible to a weekly allowance of £62.10.

As part of Carers’ Week, The Guardian asked for people’s experiences, about the help available for those looking after a loved-one – and how the Government could do more.

 

Quote from Anonymous, aged 60, of London: “The monthly carers’ group meeting is good, but this is the only support available.”

Caring for someone with mental health problems is very stressful. I have a son with bipolar and autism, and husband with bipolar, she writes.

Any crisis at the weekend or on holiday inevitably means a trip to accident and emergency (A&E) “because the community service teams are not available.”

She adds that “getting home help is impossible as services are so overstretched.” and “the A&E duty psych team cannot prescribe drugs, so if strong sedatives are needed then hospital admittance is the only option.”

Patients and carers have to wait at A&E until a bed can be found:, she writes and “last year we waited there for 26 hours until a bed became available 60 miles away.”

“Providing the resources needed for home assessment and treatment would surely cost less than waiting for a crisis and hospitalisation, and I think maybe people get better faster at home,” she says.

Significantly it’s the care support group that wins praise. “The monthly carers’ group meeting is good, but this is the only support available in the evening; those of us trying to hold down jobs can’t access support resources offered during the day. Respite provision is non-existent.”

Anonymous, aged 47, north Somerset, writes:

Carers need a break before they become broken. Carers need support before they become ill themselves. Words and promises need to be translated into action and money.

Indeed they do.

Her plea seems nothing but reasonable: “I care for my three adult children, all on the autistic spectrum and with various mental health and learning disabilities. I have no support. My life would be made easier simply if I could have one day or night off a month, or if I didn’t have to shoulder all the responsibility and worry of applying for benefits.

“At the moment carers don’t have time for their own health.”

 

Jo Walton, aged 60, from Leeds, appears to have tremendous insight.

 

“I care for my daughter who is terminally ill with a neurological condition that has left her totally dependent,” she writes.

“She has been like this since 2004 and I first reduced my hours at work then took early retirement because it is impossible to carry on a responsible career when you do not know whether your carers will turn up for their shifts,” she adds.

His hopes for the future . . .”The issues for unpaid carers will not improve until we ensure that the status of paid carers is improved. They need to be properly paid, properly trained and given job security and progression – then maybe they will stay and the informal carers can get some of their lives back.”

I believe she is right.

David Blamires, aged 47, of North Yorkshire is “on duty 168 hours per week” and asks: “Take me off benefits and pay me minimum wage for the hours I work (approximately 130 per week). This would have three advantages – it would reduce the benefits bill, you could tax me, and it would improve people’s attitude towards carers. Currently we are perceived as scroungers.”

He continues: “I care for my autistic daughter and my disabled wife. What support do I get? I might get a grant of £250. There is no actual support available for me . . .

“Men under the age of 65 who are carers are in such a minority that they are ignored.”

Linda Curran, aged 64, of Essex, says the main challenge is stress.

This is her story: ”I am no longer a carer but I did care for my mum who has now sadly passed away. At the time I did not see myself as a carer and therefore did not seek help or support and I was also not made aware of any support being available.

“I coped because I felt I had no option other than to be nursing my mum with my brother as she went through the stages of breast cancer.

“Our lives and my mum’s quality of life could have been very different had we been informed or offered practical and financial support. The main challenge of being a carer is the stress experienced and the time spent looking after a loved one.

“This does not enable a carer to have a moment to even think of seeking help. There is also a guilt experienced if you’re not coping and considering asking for help outside of a family.

I am aware of several people currently caring for loved ones and none of them recognise themselves as carers. They simply see what they are doing as caring for their partner or family member.

“Health and social care services need to actively provide much more information to carers, especially those that seem to be managing OK. It should be assumed that they will require support advice and counselling at some point and this should be regularly offered and available. It may avoid burnout and stress-related health issues.”

Rob Gershon, aged 43, of Hampshire, believes that so many government policies make being a carer much harder.

He writes: “My message to government is please stop being so slapdash about which welfare reforms affect carers based on what you think you can get away with. It is disingenuous to suggest you support what we do, when so many of your policies make an already difficult job much harder. Cuts to local authority budgets, and welfare reforms, hurt those we care for, and us, too.

“Return the threshold for carer’s allowance back to the value of 16 hours of part-time work. The introduction of the national living wage has once again meant that carers who work 16 hours part-time to support their income, mental health and sense of self, are once more ineligible for carer’s allowance.

“Caring is often personified as being rewarding, but the long list of pressures it can bring (physical, psychological and emotional), can join forces in very destructive ways. Self-doubt, isolation, and the institutionalised devaluing of what we do through welfare cuts and being bracketed into ‘worklessness’ statistics all take their toll.”

Oh my life. Just writing this is crippling. I feel I should fix it . .I’ve worked in the care sector nearly all my life, know the right people and hopefully, with others, influence change for the better.

I suddenly feel overwhelmed.