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Whose Home Is It Anyway?

November 11, 2017

Two stories hit the news this week that beg the question, if you are living in a care home, is it your home? Or are you a guest in the provider’s home? Or are you an object to be managed within a service?

The first case is about an information document published by the law firm Ridouts to assist the providers of care homes on their powers to exclude family members from visiting someone resident in the home. The full article is here, under the title, “ASK THE EXPERT – Managing The Relative From Hell”:

http://www.carehomeprofessional.com/ask-expert-managing-relative-hell/

From the title onwards, the language is chillingly adversarial. “It is your home”. “The visitor, effectively has no rights”. “The expression next of kin has no meaning and carries no rights”. Regardless of its legal rightness, would you want someone with such an aggressive attitude to be running the home your loved one is living in?

Those often used expressions like “working together” and “experts by experience” hold no truck for Ridouts. The home is a thing that takes priority over the people living there and phrases like “It is your home” expose where the power lays. To quote Lloyd Grossman – “who would live in a house like this?” It’s not person centred care – it’s Basil Fawlty care.

The second story is even more alarming because it’s not about excluding visitors; it’s about excluding the resident! John Pring has written an excellent article describing the sorry situation:

https://www.disabilitynewsservice.com/shocking-case-of-disabled-woman-trapped-in-care-home-that-wants-to-evict-her/

Lakhvinder Kaur, a disabled woman in her twenties, explains clearly what she wants from her life: to live in her own home, manage her support and engage in a social life. Surely the aspirations of many people her age, disabled or not. For seven years Ms Kaur has been a resident in a care home. This means she has no tenancy agreement, no choice in the staff who support her, no choice in how she lives her life within the home.

What has Ms Kaur done that has prompted the home to try and evict her? She’s invited friends back for late night visits. Most people of her age do that all the time. She’s insisted only female staff attend to her personal care. In other words, she’s asserted her dignity. There are other indignities but in short, they all add up to a provider affronted because one of their (paying) residents wants to put their life ahead of the needs of the service.

These two stories may be extreme cases but I don’t think so. They may stand out because of the language and the degree of professional violence. But as recent campaigns have shown, there are so many insidious ways that a resident learns that their home is not really their home. Sadly most disabled people whether they be in supported living or assessment and treatment units will have stories of where the power really lies in their home.

Stories like these make me realise how lucky Steven is. Tonight we’re going to see a Queen tribute band. Because he employs his own staff, he hasn’t got to worry about not having enough staff on duty to enable him to go. He hasn’t got to leave the concert early for a shift handover. If he wanted to, he could invite Freddie Mercury back for a late night drink without fear of breaking the house rules. A normal life of a twenty something.

Others are not so lucky. Their home is in A home. That’s a very different kettle of fish.

Independenceonly happens if it fits in with the service.

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19 Comments
  1. Absolutely right, Mark. This is probably how it is for most residents. Steven is so lucky to have you, and others are lucky that you write on their behalf.
    Care homes can give 28 days notice, so this is not ‘home ‘. They can easily prevent a family visiting, as legally family have no rights to see their family member.
    The good care homes rely on the goodwill of the owner or manager. The vulnerable person needs rights just as tenants have rights.

  2. kate permalink

    What truly horrific reading! I can’t even start to comment as I would not be able to stop! I have never before heard the phrase “professional violence”. I think it is absolutely fitting and a very accurate description of what I I am reading and what I have witnessed and suffered first hand as a consequence of speaking out and standing up for a vulnerable relative. When is this hatred towards family carers going to be criminalised? I imagine a very very small proportion of professional time and resource is needed to deal with the antics of involved yet truly unreasonable or violent family members….and even that can still be dealt with in an empathetic and responsible way, certainly not in the way or tone Ridout suggests. I am realising that professional violence, bullying, lying, covering up and incompetence is rife and increasingly unchecked and out of control. I think articles likes Ridout’s give some sort of affirmation to people in the care industry who thought they were right all along to say “these parents just get in the way”. Where are professionals and media and politicians going with their “yes let’s blame this group or that group for the ills of the world” and how far will they go in attacking and vilifying people with disabilities and their families? Thank you MN for the updates, as ever brilliantly explained.

    • Just to add, Kate, that I’m now supported in my concern with a care provider, as professionals are seeing things as they are, and want me to put me in a pivotal position. It took a long time and can’t undo the wrong done, but it’s going in the right direction.
      Some good providers are great, but the legal position of the person needs strengthening as families are often scared of criticising or expressing concerns – if rights aren’t given, than all care should be state-controlled, not be controlled by private individuals.

    • LizzieD permalink

      Of course we get in the way. What option do we have in a system where pinning people to the ground or drugging then into apathy is considered a sensible way of dealing with distress? But most of us are not the families from hell, and having to fight or even think about fighting is very imtimidating. Sure, people who want the best are going to be a problem where “the best” is a forlorn hope, but if we were not automatically treated as unreasonable from the outset it would be better.

      I once attented a talk by Luke Clements where he said that carers were the only group it was still OK to discrimate against – so I do rather like the idea of this automatic assumption that we are all a waste of space being criminalised! Much is made these days of having “better trained” social care staff, but I think some of the training and automatic assumptions that come from it need scrutinising.

  3. Frannie permalink

    So agree
    We have just come through a crisis and managed to remain at home, having been sectioned x3 in past.All thanks to a great team working alongside us, it could have been so different.

  4. kate permalink

    The journals ought to be writing about “Managing Corrupt Management within Public Bodies from Hell and their Tired, Old and Hateful Tactics”

    Quoting journalist Tim Wyatt……….”The former BIshop of Liverpool, the Rt Revd James Jones, has urged the Government to end “the patronising disposition of unaccountable power” in a follow-up report based on the experiences of the Hillsborough families.”

    The Rt Revd James Jones argues that “the reforms he suggests would benefit not only the Hillsborough families, but many others who have also experienced a dismissive, uncaring, and defensive attitude when trying to challenge public authorities.

    There are others who have found that when, in all innocence and with a good conscience, they have asked questions of those in authority on behalf of those they love, the institution has closed ranks, refused to disclose information, used public money to defend its interests, and acted in a way that was both intimidating and oppressive.”

    Well said the Rt Revd James Jones!

    • Great title for a book, Kate.
      Having read LizzieD also saying how it seems to be acceptable to discriminate against family carers, I’d say it should become a hate crime. It would protect all communities and all people against assault.
      Again, we’re coming to the end of a year, and change isn’t fast enough, but I feel we’re getting somewhere.

  5. kate permalink

    I’d start the book, FF, but I wouldn’t have any answers! The pages would be blank or maybe summaries of each tactic followed by doodles or abstract art scrawled in my own blood, sweat and tears! That would seriously disappoint my readers. The tired old hateful tactics are tried and tested and are used effectively against reasoned, rational, fair and caring family carers time and time again. I could write a few chapters but each chapter would end with “but then they might crush you using methods in the next chapter instead” and after all the chapters on ways to manage corrupt management, I’d have to say “start again at the beginning of the book as they will re-use all the tactics”!

    I am glad Lizzie mentioned Luke Clements as I am looking him up. You and Lizzie have mentioned two things I feel passionate about. I was fascinated to hear that Luke Clements is saying carers are a group it is still OK to discriminate against. I truly believe that. And you have hit on the other. I feel the introduction of legislation around hate crime was invaluable and the right thing to do. But without wishing to undermine in any way the rights of and the distress suffered by those already covered by the legislation, I think hate crime should cover any group or even individual who is vilified, threatened, isolated or harmed for whatever it is they are or believe in or fight for. And family carers would then surely come under its umbrella?

    Now who shall we task all that to?
    Task – ensure carers covered under hate crime legislation
    Tasked to – MN? FF? Lizzie?
    Outcome -Common decency with fair and successful decision making
    Date to complete – end of 2017 (FF request)
    Oooops, sorry, wrong blog post!
    On that, my book will have many chapters on the writing up of meeting notes. The chapters of my book will be in different genres. Those chapters will go under Fantasy and Fiction or Comedy.

    • LizzieD permalink

      My book would be much the same as yours I’m afraid. Lots of fears, no answers.

      Often the law is actually on our side – but it it is nearly impossible to use it, it hardly matters. I think my “dream” answer would be some way of being able to make use of the rights we DO have, but no-one is going to tell you what they are!

      Luke Clements isn’t a bad place to start, though.

    • The book would have these blogs, kate and LizzieD! Love the wit.
      And short stories.

      Horror stories or truth stories – they need to be told. The care industry is a dirty tricks industry, and deal in blood.
      Luke Clements is quite brilliant – we all seem to know about him – there are several others I can think of. There are even some good psychiatrists who understand, and surgeons too. Surgeons know about outcomes – they could see a dirty care provider from a mile away.

      • LizzieD permalink

        Maybe it would be possible to have an internet guide to people who can help you cut through the b…….t. I know there are good people out there, but finding them isn’t easy. I am constantly hearing/reading the most preposterous explanations for “we don’t pay for that anymore”, and it is so difficult, threatening and exhausting to challenge it.

        My council is one of the “better” ones, and the problems are of course real. But all I get is lists of agencies who will happily provide what works for them (at a price) not what would work for us. The young woman who wants a normal young woman’s life can be fobbed off so very easily, and shoved in a home for the elderly because it is cost effective, or can be made to seem like it is. We are the quarts, and the authorities only have pint pots. (or round holes for square pegs, maybe.) The expense of propping up this system is a lot more than changing it, I am sure, but we get nowhere saying so.

  6. kate permalink

    i’ve just read the Independent online article about Lakhvinder’s situation. There are already replies abusing her for not being “normal”, saying she ought to be grateful she has been kept alive and that she is lucky she is not in the country her parents were born or she would be suffering even more. Total on-line hate and trolling. (I wonder where her parents were born and how they know?)

    It’s beyond me. How simple is it to ensure L has her own home and sufficient support to be independent and carry on her job and life? It seems a lot of hard work to try to make her fit into a care home and make it impossible for her to go to work or do her own thing. And then to involve the Benefits system who will then have to faff about sanctioning her for losing her job.

    FF, are you ghost writing my book for me? Lizzie has given a chapter heading that is a MUST. “We Don’t Pay for Than Any More”. This does get followed with preposterous explanations that usually have no regard for the potential financial abuse they plan to inflict on the vulnerable adult. That can go in the comedy section…or horror…..i’m not sure.

    • Lakhvinder and Kaur are Sikh names, so the country’s India, and yes it is a corrupt and awful place so much worse there (rich country that lets children develop huge cancers, and charges extortionate amounts of money to treat, therefore child often not treated, dies slowly and painfully).

      She’s got every right to decide her own life, and Sikh women are very much freer than many women in the world, so would think like her. And she’s British.
      The trolls should be identified for hate crime.. Gosh, so much work to do by end of year..

      And no, Kate, haven’t the skills to ghostwrite or to think of a title like Lizzie, but thanks for thinking of it ✌️

  7. Pauline Thomas permalink

    Unfortunately families who care for loved ones are holding the losing hand. LAs, Care Companies and the NHS are holding all the aces.

    When the carer reaches the point where caring is becoming an exhausting fight to get through the day or lack of sleep is making you grumpy and weepy the only alternative is to ask for respite from it all. Carers can sometimes be desperate for rest and yet fearful to hand their loved ones over to what? More often it is a take it or leave it situation. As a carer myself of a person who is going through the most appalling crisis in his life and no assurance from doctors that he will ever get back to his loving self, I often yearn for to be living the life my peers take for granted. I do not want to be dealing with social workers, LD services and psychiatrists. I want out. Rant over. A bad day again.

    • LizzieD permalink

      Ranting is good. And sometimes it is respite from THEM, or something a bit more imaginative than making things worse. Actual, proper, support and help to get you through a difficult patch. Can only offer sympathy and wish you courage to feel less despairing soon.

    • weary mother permalink

      Pauline

      What can we do ? And where can we go to find the support and care our sons deserve by right ?
      No one is listening.

      There are so many Statutes spelling out very clearly the duties of care that LA’s have – but they just ignore them all. Drive a horse and cart through them all. And our going to Law in desperation only produces aggressive response and costs us more life and energy.

      Hours/years are spent by managers sitting together day after day uselessly shaking out and counting their budget, and by their staff doing the same repeating and refreshing empty assessments. Yet more cash is burned up, paid for by us – in ‘nothing’ meetings, where same staff sit together and talk in circles with no outcome at all, in terms of support for our loved one – or us.

      All this revenue could be used to give our sons and daughters safe and healthy lives, and for us – ‘just’ parents who are doing all plus supporting the State – perhaps a few stress and exhaustion free days

      Our sons and daughters are vehicles for the job creation and for job security..of able others; they and us are used to polish a Public Care machine that produces little or…. nothing care.

      We oldies have loved and cared for our sons all our lives; we have offered up our lives – and it would be nice to have some days off before die; before we hand our sons and daughters over to our worst nightmare – the free of cost to LA, – institution.

      • All those days of paid care were supposed to be days off. I don’t want to get old experiencing the same either.
        As Pauline says, I want out, but we can’t just walk away.

        As she says, some people do care, and we want those.

  8. kate permalink

    Pauline, you have described it just as it is for people with LD and their carers. I am so sorry about the crisis your loved one and you are suffering. It’s not fair on you to have to stay strong, but I hope you do and I hope tomorrow is a better day and you wake up with some more of whatever gets you through.

  9. Pauline Thomas permalink

    Thank you Lizzie D, Weary Mother, and Kate for the kind words. It helped.

    I just want to say that there are some lovely people in mine and my son’s life that really do care and really do want to help. I love them for that. However it is the arrogant ones that are also in my son’s life that are getting to me at this moment.

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