Carers Week – so what’s new?
Laura Graham takes a sideways look at the support provided to carers, in the week dedicated to recognising the work they do.
And so it’s Carer’s Week.
In some areas of the country, you will see bunting, balloons, and tea and cakes for carers. Some carers’ hubs will even lay on a massage where funding permits, though no corresponding funding for a sitting service or replacement care will be available, so many carers will miss out. You will also see lots of charities who claim to support and represent carers, out and about talking on behalf of carers via the media. Usually the focus will be how many of us there are, how much we save the country, and how wonderful we are. This week will see donations to the said charities increase so that their salaries will be paid.
[Tweet “Meanwhile, those who they claim to represent, we carers, will continue to do what we do regardless of this being “our” week. Nothing will change for us. “]
Carer’s Allowance is unaffordable for me
I cannot afford to claim Carer’s Allowance. Even with the other benefits that can be claimed alongside this, or the £110 per week I am allowed to earn if I took Carer’s Allowance, I would still be £400 per month short of what I need to have before we could eat. I provide care 24 hours a day, 7 days a week, and work 40 hours a week from home.
To qualify for Carer’s Allowance, a carer must be providing at least 35 hours of care per week. However, despite this criterion, it is not contractual and therefore does not cover breaks, weekends, or paid leave. In fact, if the person you care for is in hospital for a specific period of time, the Carer’s Allowance is stopped. But the bills still need to be paid. It is a pitiful, and I think an insulting, amount of money, but for many, it is vital to maintaining a household. Most certainly, the amount of money Carer’s Allowance provides in no way reflects the work we do. It would actually be illegal to employ someone for that “wage” for the hours we work.
Resource Panel or Rationing Tool?
According to my most recent Resource Panel, which followed a Carer’s Assessment a year ago, there is no evidence that I require some time for myself to attend an exercise class or to meet friends. I had requested Direct Payment funding so that I could pay for replacement care one evening a week and for a few hours at the weekend.
On the Panel deciding my case was an NHS Geriatrician. I found this out by chance, as the details of the Panel are not transparent, and Social Services claim that they don’t make notes in relation to their decision. No-one could provide an answer as to why an NHS-employed geriatrician is qualified to decide whether Local Authority funding should be provided to me so that I can meet my friends at the weekend. To call this a Resource Panel is misleading. It is an unaccountable Rationing Panel making decisions beyond their professional capability and in my case, outside of their employer’s remit.
Social Workers may be part of the problem
Why do we need a Panel anyway? Surely, it makes more sense for a Social Worker to make these decisions? Well, in an ideal world, it would make sense to allow Social Workers to make these decisions. However, in the world of carers, Social Workers are far from perfect.
We have had five Social Workers in three years.
The first lied about my Mum in an attempt to cut funding for her Direct Payments. He claimed that she “pretended to be disabled”. I instigated defamation litigation against him, and his manager undertook an investigation which found that he had been “misunderstood” and had really said that my Mum pretended to “not be disabled”. As if by magic, her funding then returned to the original amount, though it was six months before we received a penny, during which time, I had to find an extra £1,000 per month to pay PA salaries.
His successor walked out of his job and no-one bothered to inform us. The next one was actually quite good. She listened to hear rather than to react, she delivered what she had promised and when her work was done, she closed our case.
Then the Care Act happened…
The Care Act promised so much, but has changed nothing. It took three months of trying and a letter from one of my Mum’s consultants to finally get a Carer’s Assessment. That Social Worker knew nothing of the Care Act. She withheld vital information and her written skills were so appalling that I had to spend three hours re-writing the assessment ahead of submission to the Rationing Panel.
Then her Manager spent months ignoring my emails and only responded after I lodged a complaint. It was agreed that I should have re-assessment which took the Social Worker another couple of months to arrange, as she had been, “waiting for me to contact her”. When she eventually came to my home, she confessed to misleading me at the earlier visit, but did not feel the need to apologise. I asked her to leave and reported her to her Manager who agreed to take up our case herself. She said she would be back in touch by the end of January. I’ve not heard from her since.
I will spend some time during Carers Week composing yet another complaint just to get her to do her job.
I’m not an unusual case. I haven’t just been unlucky. Carers across the country have similar experiences to me. I was so lucky to find the Carers Solidarity Forum, a Facebook group set up by a carer for carers a few years ago. It has over 1,200 members who provide support and advice about the “system” we’re trapped in as carers.
Common themes that arise regularly include the lack of support from Social Services, who lie to us; lie about us; treat us with suspicion; who pry into our lives; who fail to provide the information we need; and who fail miserably to support us as carers when we need it; or to even do the job that they are paid to do.
It is in this group where I have found all the information I need, and not from any paid professional or charity working in the realm of care.
What will I be doing to mark Carers Week?
I will be caring for my wonderful Mum, ensuring she has all she needs, in our safe, loving home as usual. No bunting, balloons, or the other nonsense that others think tick a box for Carers Week.
Until we as Carers are treated with the respect we deserve, have the finance we need, and the supportive professionals we should expect, I will not participate in the façade of celebrating “us” when there is so much that needs to improve. Show me the week of shaming those who let carers down, and I’ll be there in a shot!
Notes and Resources
Laura Graham is an independent researcher/writer/consultant working on strategy and policy development in the fields of addiction recovery, mental health and carers’ issues. She is the founder of Cure the NHS-Lambeth and is passionate about improving patient’s experiences of NHS care.
The Carers Solidarity Forum can be found at https://www.facebook.com/groups/carers.forum/
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If you would like to share your own experiences of being a carer, please do add a comment at the bottom of this page.
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6 Replies to “Carers Week – so what’s new?”
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I would like to know if this is true as my younger sister looks after our mum and is her main carer with dementia and can’t be left on her own at all now, for very little pay, can she claim this direct payment I know she would have to give up her carer allowance, and why don’t they tell people about this? as it would cost a damn site more if she was in a home Thanks
Hi Marie
Your mother and your sister should both have their needs assessed by social services, and be allocated funds to meet the eligible assessed needs. This is the Direct Payment referred to. However, as you can see from Laura’s account, there is often a wide gulf between the amount of support you feel that you need, and the amount the local authority is prepared to pay for…
Good luck, and do send me an email if you have any other questions – editor@independentliving.co.uk
I am a parent carer supplying care to 3 young adults. 2 are classed as complex/ critical the other lower level of need. My 2 youngest, 18 and 21 live at home; the 28 year old is in his own tenancy. I find that for parent carers we seem to get lost to the system when a child reaches 18. My needs/ support etc is not the same as another 63 year old who suddenly becomes a carer.
Hello Hazel
Thank you for sharing your experience – really illustrates how individual each carer’s situation is, and that there is no “one size fits all” answer…
It is not commonly know that when a social worker makes an assessment, the manager of that department cannot change it without sitting in on another assessment.
Thank you, John – that’s interesting to know. As you say, certainly not common knowledge.