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Signpost To Nowhere

December 2, 2014

Here’s one of my new year resolutions. In fact, I am going to start it straightaway. I am going to avoid clicking on any link that leads to me to an article about “what carers want” or “help for carers”.

Once upon a time, carers may have got some practical help. Or they may have had a kind hearted professional just listen to them for half an hour or so. All of that has gone. The modern way, the modern input is for “signposting”. You don’t get a social worker anymore – you get a human sat nav who signposts you directions to destinations that presumably you didn’t know about. Help with running a personal budget? Take the third turning on your left. Want to sign up for a creative writing course? Take the sharp right bend off the High Street. Nobody does anything. Everyone signposts.

Trouble is, the signposts invariably lead to dead ends. Or you find you’ve been giving a map that has no bearing on your journey. You can go along with it, if you fancy trying to navigate Balham high road with a street map of Dieppe. If I’m setting out on a journey I’m unfamiliar with, I’d quite like a navigator with me, or perhaps someone to share the driving. As a carer, I will get neither – I’ll be pointed to some vague point in the far off distance.

Once you’ve been signposted and you think you’ve stumbled across your destination, what awaits you? You’ll probably find someone putting in a lot of energy into establishing whether you are a carer. I don’t understand those articles that appear with depressing regularity – “how to identify if you are a carer”. Don’t people know? I do. Most carers I know, know all to well what their role is. Has anyone turned up at their local health centre for a blood pressure check to be told – “oh, and by the way, I think you’ll find that you’re a carer on the quiet”.

Once it has been established that you are  a carer that is pretty much the end of the signposting. You may be told that sleep is important to fulfil your caring role. You may be advised on the value of a good diet to preserve your health – extending your caring longevity. And if you’re signposted to one of the national carers organisations, you may be asked if you fancy knitting something to help other carers. Oh – and you may be told all about an organisation called the Citizens Advice Bureau, who can make sure that you’re getting all you are entitled to. No more carers links for me. I’d rather not ever have to have another carers assessment. They take up two hours of valuable time but unless you enjoy being patronised, they’re not really worth the effort.

I’ve had five carers assessments over the past four years. I may have had more (or less) but they were so uninspiring, I may have merged one with another. One that was slightly different was when I was identified as my wife’s carer, so this one was done by the NHS. The forms were exactly the same as the social care ones but there was a slightly different emphasis on the questions. This may because it was carried out by a mental health worker and she was applying the same tone  and manner that she might adopt with one of her patients. There was a lot of time spent establishing my money management – Did I get into debt? Do I buy lots from catalogues?!! Did I shop around for food bargains? It was relentlessly middle class and deeply offensive. Then with a quick change of gear, she moved on to my decision making capacity – Did I have difficulty making choices? It was such an abrupt change of topic that I thought we were still discussing money. By now, I was fed up. “Funny you should ask that. I can’t make up my mind whether to spend my last £50 on paying the gas bill or buying myself a new gimp suit”. She was  on the ball, I’ll give her that, because my facetious remark opened the door for her to question me about my sex life. It was horrid – my weak joke was checkmated as she had an inner wank at my expense. When I got the final assessment through, there was no mention of sex – there wasn’t even a section of the form that came anywhere close to the topic. It was the final humiliation.

Every now and again, someone will come along and ask what I’d like in my role as a carer. I was asked yesterday. It was well meant but the truth is, I don’t really have an answer. I know what I don’t want or need to be signposted to but I don’t have any firm ideas on what I’d like instead.  Respect? Time? Time off? An acknowledgement that all the signposting in the world leads to shite city? Sometimes to be left alone and not have to engage with the illusion that carers are valued would be a start.


From → Social Care

  1. Thank you once again Mark for summing up the Plight of the Carer so well. I actually directed our Parent Participation officer from our county’s carers group to your last blog post about the patronising of carers, when she had excitedly told us of yet another pamper day. To give her credit she replied saying she had read your blogpost and hadn’t really thought about things that way, but would keep in mind that maybe pamper days weren’t for everyone.

    So what comes though today? An email offering a discount at a beauty salon because Christmas is coming and it is party time!

    Even on the carers website it says “every Carer should have an equal opportunity of recognition as a Carer & a right to all the information whatever their circumstances.”

    Says it all really. We clearly don’t understand that all we need is a little signposting and a badge around our neck saying we are carers.

    Locally they decided to try to start a carer’s group. But what they actually mean is they are running one of these Positive Caring programmes. I suspect they are all exactly the same where ever you are in the country. They ‘give you the opportunity to meet with other unpaid carers to gain information and support’. So yet again nothing practical like respite or someone to help out with shopping (our wheelchair doesn’t work with those supermarket trolleys) or even just a sitter so I can go out.

    I think it is the illusion that what they are doing is helpful that bugs me the most. As you say, maybe we should just be left alone if there isn’t anything practical they can offer us.

    • Pauline Thomas permalink

      I do believe that the people who run these carers organisations do really know that the help they are offering is barely scratching the surface of what carers desperately need.

      Local authorities usually are the biggest funders of these organisations, and they only fund something that helps boost their public image. Therefore many of these carer organisations are only really doing the bidding of their paymasters. I want them to get behind carers who are asking for, nay pleading for, proper funded care for their loved ones from their local authority. Is that too much to ask?

  2. There is NOTHING practical they can offer. It’s all about the money. That is why they asked you so much about your money management. However, it’s the same thing in America. When I was living in New Jersey, I sent my two kids to private school. I needed help with tuition. They not only dug DEEP into my financial records, but they asked me all sorts of offensive questions (just as you experienced)! When it’s all about the money, it doesn’t matter what area either, it’s a lose lose situation. As one commenter already said, we should just be left alone then since there are no practical solutions.

  3. Sally permalink

    Right as ever. “Signposting” is a horrrible responsibility -shifting expression.. Every damn service in our Borough is trying to weasel into a signposting role. It means that if you come to them they will-gasp-direct you . At a local meeting recently a group of parents went insane trying to establish: who will actually be providing anything? Who is responsible for actually doing something?
    And if there is nothing to signpost to? Its part of a service’s role to let people know what else is out there which could be of use, its not a service’s single purpose! And see how signposting is talked up to be wonderful.What does it mean? Nothing at all.
    New parents of disabled children can sometimes need to be told that they are carers-that what they are doing and will do is over and above what parents are required to do, and they are entitled to help.I said help, not signposting.

  4. That was so right and well put that it could have been telepathically transmitted from thousands of other carers brains into the mind of someone who has so eloquently stated the situation.

    I have never had the offer or joy of a pamper day, but nice as it would be, that wouln’t help me feel less concerned about what would happen to the person I care for if I should slip on a banana skin or something more fatal… Or the dilemma of how I can get out to work, but somehow still be there every day to ensure the care, safety and meltdown first aid of the person I care for (as they move into the new and uncertain demands that go with adulthood). Paid employmentt would certainly raise my bank and self esteem balance, whilst ensuring that the mortgage,utilities and food continue to be on offer when Tax Credits become extinct, but cloning is not yet widely available.

    The answer – being signposted to the nearest parent support group. While I have appreciated good carer bonding, all of us just meet and talk about what we need and cant get to support us in a carers role. The hope dribbles out as the teapot empties and the custard creams soften.

    • Sally permalink

      I don’t think enough is said about the extraordinary difficulty of holding down paid employment and caring for a disabled person.If they are at school, the special schools tend to have more holidays than regular-and at different times. Most jobs have, say, 4 weeks holidays a year, most children have 12-but if you have children at regular and special schools, well, try 16 weeks.Oh, not at school? Then the person will be at home alone all day.The people I know who have jobs either have the sort of job which permits working from home or flexitime, or have incredibly understanding bosses. Unlike other parents this sort of high intensity care will continue. Not for us to say “Isn’t it wonderful how independent they are now!”
      I too would love paid employment for my self esteem and bank balance.My last attempt was shot down by my son’s placement falling apart- him being at home unexpectedly and me summoned to many meetings.I tentatively raised this as a problem in one meeting-that I was going to lose my pathetically small job. Back came the answer from the Unit manager:”Your job is also to be your son’s mother.”
      I would like those who wish to help carers to actually sit and look at what this demands and then at what sort of help we’d need to be in employment. Just the practical realities: how to cover umpteen weeks holiday for someone who can’t be left alone or slung off at a school holiday camp. What to do when the activities for the disabled constitute a couple of days and you need to cover several weeks.We get a lot of syrupy empathy: “Its difficult I know, what a fine job you are doing, have a custard cream”, but nobody who can say :”Right. Exactly how much cover do you need in order to work?”

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