Monday, January 26, 2015

From O. Reader


This is a rant. I don’t usually rant, and this is probably not the place for it – but I have ranted elsewhere, so I might just as well rant here as well. Normally my posts attempt to be mildly humorous, dealing with the vagaries of nostalgia and growing old gracefully – or rather, in my case, disgracefully. This is about age, but there’s not a lot to laugh about.

For a number of years we had increasing responsibilities towards my mother and her husband, who suffered from dementia towards the end. He died 18 years ago, so since then Mrs O and I have had sole responsible for my mother’s care. She is now 95, not far off 96. We have gone through all the problems of her going in and out of hospitals, and having an alarm button go off in the middle of the night when she fell or made it to the bathroom but couldn’t make it back. She adamantly refused to live with us, so this is done at a distance of about a mile. Mrs O ultimately ended up washing and dressing her for years, and I helped feed her, and we got her to her place of worship until a little over two years ago, when we just couldn’t get her back out of the car. Finally, about two years ago, it became permanent bed. Over the years we bought special beds, special chairs, you name it, and finally when our “get up and go” sort of “got up and went” we had care agencies come in four times a day to feed her and bathe her and ultimately just keep her clean and comfortable in bed. We regularly slept on make-shift beds at her place whenever there was any sign of a need, and were geared up to move in at night-time on a semi-permanent basis. And that’s when the Jobsworth people struck!

If you don’t know what I mean by Jobsworth, all will be revealed at the end.

My mother now eats pureed food – which we buy in from an excellent specialist company. She has a thickener put in her drinks – just in case something goes down the wrong way, although it never has. BUT – all of a sudden someone in the social care system cottoned onto the fact that the carers were giving her thickened liquids. Horror of horrors - they are not qualified! If they worked in a care home, they would be qualified – with even less actual qualifications, but because they work in the community, the rules say they are not qualified. It’s a policy you see. It’s a guideline – although actually, it is viewed as a law. And one size fits all. So who can feed her now? Well, the family can. But, but – they’re not “qualified.” Yes, but if something goes wrong, they are not going to sue are they? So how does the family get “qualified”? Well – er - the existing “unqualified” carers who have been doing this for a couple of years can train them...  Huh?

And if the family can’t do the feeding several times a day forever, the only other option – apart from the client starving to death – is a care home.

I have very negative feelings about the care home industry – probably because I have worked in it for the last 35 years. There has been a huge scandal in this country about horrendous things happening to vulnerable people in care homes, and in the most infamous case I was interviewed by the police twice as a potential prosecution witness. As it happened, the proposed villain of the piece – a doctor who owned a string of care homes and made his fortune – never got to trial. Someone attacked him with a hammer, and he was declared unfit to plead. The cases collapsed. It would be an irony if he ended up in the care system he was accused of abusing.

Anyhow, back to what actually happened. One evening a few months back, we had just got back from long trip to England for a funeral – when a phone call came through at 7.30 in the evening. An officious voice – we hear that the carers are feeding your mother with thickened fluids – they can’t do that. We’ve stopped it! Crunch! But, this is tomorrow morning – can’t they do it tomorrow until we can get our heads around it?  No – absolutely not – rules is rules, orders is orders, and we are only obeying orders. So what happens to my mother? There was some “flannel” as we call it here, but basically, that was our problem!  So to prevent my mother going without food and drink for the whole day, we dropped everything and did the feeding – as noted above, having been “trained” by the “untrained” carers who are still allowed to go there but only to change and wash her.

Finally, it came down to it. The rules say that only nursing auxiliary carers should feed her because she has a medical condition. But tough - they haven’t got any spare. That’s why it is all down to us and when we eventually crack up, a nursing home for her. Forget the government’s pledge to keep people in their own homes. Forget the fact that the regular carers have no problem feeding her whatsoever, and are up in arms at the slur on their capabilities. Forget the fact that my mother has had unsurpassed personal care and all paid for (by her and ourselves) - it doesn’t matter, you see, there’s a “policy.” We are not allowed to think outside the box.

In discussions at subsequent urgent meetings we try and get some sense. I ranted and Mrs O burst into tears. She was more successful in getting a sympathetic ear, although the results were the same, until we pointed out – er – what is this medical condition then? Answer – she has difficulty swallowing. How do they know? Well the SALT lady (Speech and Language Therapist) said so. But she’s never ever seen my mother! She’s never visited! She made a decision without consulting us down the end of a telephone! She just ticked a box! Consternation! Errm - they would have to look into this...

Anyhow, to cut a very long and tedious story short – we finally got the SALT lady to come and see my mother. It took three months of nagging to get it to happen, during which time the health authority that lobbed the hand grenade into our lives was conspicuous by their absence. And when she eventually came and did the examination – surprise, surprise, my mother may LIKE thickened fluids for “ease” but she has NO problem swallowing. Phone-calls are made with a mushroom cloud coming out of our heads – and this time the health authority backs down – the original carers can feed her again. Back to square one after three months of totally unnecessary grief.

If we were the family from hell and my mother looked like she was being abused, then I can understand the cavalry coming to the rescue. But we’re not and she’s not, and we have been praised by the doctors and nurses for our level of care for a relative. But this was a different department you see, and (umpteenth repeat) it’s a policy. That’s the mantra. Jobsworth.

We are still not out of the woods. There will be further future reviews – as there should be – and there’s always the chance that an officious social worker will find a new policy in triplicate designed to trip us up.

Are we going to complain to higher authority? We would certainly have done so if they hadn’t caved in, and my letter was already prepared. And when my mother is no longer with us, we will consider what we can say to prevent anyone else being needlessly put through the mill in the interests of bureaucrats ticking boxes. For now, it is a sigh of relief.

So – rant coming towards its conclusion – Jobsworth? It’s a folk song by Jeremy Taylor. I’ve sung it a few times in the past, but I suspect that the next time I go to a folk club and warble – it will be on my list.

The chorus goes...

Jobsworth, Jobsworth
It’s more than my job’s worth...
I don’t care, rain or snow,
Whatever you want, the answer’s NO.
I can keep you waiting
For hours in the queue.
And if you don’t like it

That’s the chorus. I think I am going to write my own verses.



  1. You well deserve to rant against the bureaucracy of the UK system of healthcare and community services.

    I have a younger sister who was an rH baby. She was born with several birth defects including severe mental retardation. My parents, with three other very active children at home, made the difficult decision to put Amana in a "training hospital" at age four.

    My mom was at the end of her rope when she made the decision and suffered emotionally for the rest of her life. The one positive thought for Mom was that her youngest daughter was treated well by people who were dedicated to care of the mentally challenged.

    Then bureaucracy stepped in. Several years back, during a very conservative (read job and service reducing) administration was voted into our state house. As a cost saving move, they ordered all of Virginia's mental health facilities closed over the next dozen years.

    So in the past decade, hundreds of mentally ill people have been sent 'home' to communities that were ill-prepared to handle them.

    In one well-publicized story a state senator was stabbed and almost killed by his son. The son then committed suicide. The real tragedy was that the senator had tried desperately to find a private mental facility to take his son, but they all were full.

    The Central Virginia Training Center, originally named the "State Colony for Epileptics and Feebleminded" is the last to close. We resisted the plans to move my sister until my mom passed away, but since she passed last May we have been meeting with a team of people there and visiting with privately run group homes nearer to us in the Richmond area.

    The good news is we have located a good home for my sister. It is state licensed of course, but a team of administrators, occupational therapist, physical therapist, nurse, and social workers, have made a couple of visits to make sure it meets my sister's needs.

    All seems to be going well. We are nervous. After all my sister, who is non-verbal, is going to be moved out of her home of over fifty years to live somewhere new, with new people surrounding her. I hope she adapts.

  2. An occasional reader8:24 AM

    Sorry to hear about the long-term situation with your sister, and I hope you get a satisfactory resolution soon for everyone’s sake. Similar problems have occurred in the UK with a massive political campaign to close “institutions” and change to “care in the community” that really took hold in the 1980s. Cynics would say it was to save money. Certainly some hospital facilities were poor and needed to be improved if not closed. But the actual CARE in the community soon fell down as fragile people were uprooted from their surroundings and the social services (on tight budgets) couldn’t cope. People who were stabilized by medication, found themselves out in the big wide horrible world, and tragedies happened, as in the example you gave. (For some former patients the unwitting syndrome became - I’ve taken my medication, so now I feel better, and there’s no health care professional to really check on me when I decide I no longer need the medication – so now I’m a danger to myself and the community – and I’m out there in the community!) For others, functioning semi-independently in “sheltered housing” is not an option – they need looking after properly and compassionately. But some in the private sector likes to cherry-pick who will cause them the least trouble and generate the greatest profit to the care home owners.

    The best facilities by far over here as those which are State-run. But they are few and far between.

    And the bureaucracy. Huh! How many social workers does it take to change a lightbulb...? (Answers on a postcard please...)

  3. I thought was only an Italian problem. Now I know it is a world problem.