Tuesday, 10 July 2012

Farewell Welfare Care: 'Personal Annhialation'

I'm sure that most would agree that it's good to see disabled people out and about, having a good time and enjoying themselves. That's what 'personalised budgets' are supposed to do so that disabled people aren't stuck in their homes 24/7. In fact, two years ago, Paul Burstow the Minister for Care announced in the 'Guardian Newspaper'  that the government were going to extend the 'personalisation' of adult social care. Finally the draft 'Care and Support Bill', was released yesterday that seemed to confirm the government's plans for increased choice and personalisation.

I already had a personalised budget via 'direct payments', and it had completely transformed my life. It had a more holistic approach in comparison to the old style 'home help' care plans, which contained a whole list of ridiculous things that home helps were not allowed to do. No, direct payments were about tailoring your budget to your own care needs, and you were in control of that. It also included 'day opportunities', which meant you could get out and about socially accompanied by your carer or an informal carer, engage in a hobbies, and provided for times when a carer was needed for necessary things like hospital appointments.

I really do need that help. I can shuffle around the house; sometimes hardly at all. I can't pick up anything of any weight. I fall over a few times a week due to momentarily losing feeling in my legs. If I go out I need a wheelchair and someone to push it because my arms are too weak to self propel it, and my leg muscles are too weak to take me anywhere further than about 20 meters. I need help with just about everything from laundry to shopping, and someone to accompany me everywhere. I constantly suffer from extreme fatigue not only due to the illness, but because I don't sleep well due to pain.

Although I may 'look' OK, I'm not. I have an as yet undiagnosed neurological condition, probably a mixture of M.S./M.E. and Fibromyalgia my G.P. suggested, but no formal diagnosis as yet. As a result, I've received 'direct payments' for the last 6 years, but needed them 9 years before that. I had to deteriorate enough first to the extent that I asked the local authority to put me into a home, before they granted me any help. I finally was forced to give up work 2 1/2 years ago when I deteriorated again, and consequently the local authority increased my budget once more.

I have deteriorated since then. My muscles do not support my joints any more, which results in painful clicking and grinding, and this is also impacting on my mobility. So I have 'substantial needs' one would say, but in the same Guardian article, the Institute for Fiscal Studies, stated that to achieve personalisation the government would have to cut existing care budgets by 33%. Consequently, a year later, stories started to come out into the media about local authorities across the country cutting budgets tothe extent that they would only fund substantial/critical need. I thought I would be OK, because I can hardly do anything without being in severe pain and exhaustion: I was so wrong.

Yesterday, my care plan was reviewed, and despite the social worker agreeing that I have substantial 'needs', to every question that I answered regarding what my carers do for me, the reply was: 'we don't fund that any more'. So from now on, no one is allowed to do: laundry, from putting into the washer, putting on a ceiling clothes rail, ironing and putting away; I have coal fired central heating (gas exacerbates my asthma), and carers aren’t allowed to clean out, light them, top them up, or fetch coal in (I can't even pick up a coal bucket, let alone fill it); no shopping allowed or putting it away; paying bills or doing any post office visits; carers aren't allowed to accompany you out any more either socially, or to hospital/doctors/dentist/opticians or other practical appointments where you need someone to propel your wheelchair; they can't put the bins out; can't stack or empty the dishwasher or do any kind of clearing up whatsoever: the list goes on and on. All of the things that I cannot do for myself. Just about anything you can think of that a healthy person would do in the home or outside the home on a day-to-day/week-to-week basis is no longer allowed.

I might be left with a little budget for cooking (but they are not allowed to do the dishes), and some personal care, like help getting in and out of the shower or making sure that I am safe and I haven't fallen (but I'll have no clean clothes to wear and they aren't allowed to wipe the shower out afterwards; I may as well just remain smelly). The social worker said I'd be lucky to receive two half hour visits per day (in the winter it takes around an hour and a half a day just to see to the fires). When I have a big spasm, I can't move and I can't even cut up my own food, but if I don't need that help every single day, it doesn't matter does it? I'll just have to sit here, wet and poo myself, and go hungry and cold, but that's OK cos I'll wear a nappy all of the time then just in case eh? It will warm me up a bit, along with the smelly jumpers I have to wear!

I am supposed to have everything delivered now, but they don't understand the costs of that. Fresh food (and I say that in the loosest sense since they mostly send you stuff that's about to go out of date), in terms of fruit for example does not last a whole week; you're lucky if it's a few days. I can't eat processed food because I also have IBS. So I'll have to do an internet shop twice a week which will cost £8 delivery and I will also have to spend a minimum of £25 per shop, that means my four weekly food bill would be £240: I cannot possibly afford that. And since no one is allowed to put it away, what do I do with it when it arrives? It also means that I won't be able to do any shopping locally. I've tried before to do almost everything online, but you tend to end up spending more overall. Also, occasionally, my internet goes down, and a fortnight ago I couldn't withdraw any cash from NatWest; in both cases how would I obtain food?
Even if I can get hold of cash, I can't carry a week's worth of shopping; I can barely carry a light bag. What if I have a spasm when the shopping is due?

Apart from all the practical considerations inside the house, how will I get out of the house without someone accompanying me when I need to use the wheelchair? I can't self propel, and I can only walk a few meters, so does that mean I'll have to stay in from now on other than going 'door to door' to somewhere that I don't have to walk much? Not only was I to lose practical help inside the home, but I was told that all disabled people, no matter how ill they were, would not receive a 'day opportunities' allowance from now on, or mileage paid to a carer with a car to run errands and take you anywhere; not one single penny of help to enable anyone to get out of the house. 

Ah, now the very helpful social worker had a suggestion for all of this: I can use my D.L.A. to employ someone to do all of the other things now and pay for any transport needs! That's what D.L.A. is for isn't it? As I replied however, I pay ALL of the care element and part of my severe disability element back to the local authority for my care, so how can I use that? She didn't actually know what to say! When I factor in the shopping costs, with my higher heating costs, special dietary requirements, and other things that D.L.A. care is supposed to cover, it leaves me with around £40 per month to pay for any transport needs. Even a taxi to my local village/shop is £5-£6 round trip; to go and see my mum is a £20 round trip; to go to the local town is a £15 round trip, so these 3 (completely extravagant) trips out a month would cost £40: oops that only leaves me with £0 to pay for all the things I need doing in the home, and for someone to accompany me! So I won't have to go out at all then. That still leaves me with £10 a week to cover most of my care needs, which will just about allow me to employ someone an hour and a half per week – it takes more than that each day to see to the fires in the winter.

Being that no one will be on hand throughout the day, I may have to have a 'care call' system installed, but you actually have to pay for that, so it looks like I'll have zilch left to pay for any practical help inside or outside the home.

My carers have said that I just won't cope, and I won't. I only opened some windows last week when it was so humid, which only took a couple of minutes, and I was completely exhausted and in pain afterwards: how will I manage everything else with no money to pay someone? Yes, I'm pretty tired of being ME!

When you think that 2 years ago, Paul Burstow said that personalization would be good for service users, would offer even more choice and support to lead a dignified life, it makes you sick (literally it seems). The consequences will not only lead to people becoming almost completely housebound due to having no one to push a wheelchair, but to being cold, intermittently hungry, smelly, and sometimes completely incapacitated without anyone to call to for help, without paying for that out of money they don't have. It used to be about 'heating and eating', but it now seems it will be one choice between 'heating, eating, or care costs'. 

I'm still in shock because I remember what it was like for me before I had the help; I used to go hungry often because I couldn't get out, and when I did manage to get out I had to live off ready made sandwiches, which played havoc with my digestive system due to my IBS. I smelled; my house smelled. I hardly ever went out. Eventually I became suicidal and that's what encouraged me to seek help from social services, because I really do like life; just not in terms of the way I was forced to live. So me and a few million others are supposed to go back to that way of life are we?

One thing that really got to me, and I don't know why, but as the social worker was walking up the garden path towards my door she was singing to herself. And, during the assessment while she was writing up what we were saying, she kept humming and she seemed really happy. The assessment she was doing was about to change my life to such an extent, that I honestly don't know what I am going to do. The prospect of being in more pain and facing more exhaustion is almost too much to bear: and she was humming!! 

Ironically, as the social worker walked out she nodded to my laptop and said 'good job you've got that then isn't it?'; at that point I admit I nearly lost it. So my laptop is to become my whole social world? Perhaps she knows something I don't know, like an 'app' that knows how to pick someone up off the floor and light fires? Or, I dunno, perhaps finds 2 out of the 3 carers new jobs in the current financial climate in one of the most jobless areas of the country? 

Yes, humming away aware it will most affect that main carer who works 16 hours and will be devastated; there are no jobs around here, and so she will really suffer. All in all 3 household's lives are affected by the decisions taken yesterday, and if this is happening around the country, that's money yet again being drained from local business and the economy in general, just like the billions taken out this year due to changes in tax credit payments and the time restricting E.S.A. to just one year. But, it's nice to hear people singing along as they cut away; reminds me of how they had an orchestra to meet people as they were entering concentration camps. Now of course, that's a ridiculous comparison, but at the same time, when someone is singing while they give you really bad news it feels very, very wrong.

To be fair to the social worker she was quite a kind person all in all who said that my case was complicated, not clear cut, so she would fight my corner with her manager. I don't suppose it is very nice for her having to spend each day delivering bad news to disabled people. Still, that happiness and humming...

The social worker suggested that I look up my LAs 'purple pages' with regard to adult social care, so after she had left I did. The page about personalisation is called 'Living My Life My Way'. It speaks of disabled peoples' 'needs, wants and aspirations' being met with wider choice available, much like government policy as you would expect. But in reality, the LA are not meeting peoples' needs let alone their wants or aspirations. It's all 'double speak'. The government says that something it is happening, and keep repeating that it is happening, then people think that it is happening, and 'oh look at this web page that confirms that it is happening': but in the case of personalisation it certainly is not! 

They may come unstuck yet with their policies however. What Local Authorities are doing is contrary to the law established over the last 40 years, so it could be challenged in the courts. Also, it is a false economy with regard to disabled people who have substantial needs, because the cuts may force them into residential care, which will cost much more, and this is happening across the UK.

Yes, a great comfort my laptop will be in future when I'm cold, smelly, housebound in a filthy home, and generally hungry. That's not personalisation, it's the complete opposite: cruelty and neglect.

So to the left is my empty wheelchair; no one to push it, no need for it. How wonderful. A personalisation of a care plan that conversely takes the personalisation element away completely, along with all the support to help you lead a normal life! Along with the others affected, I want to say thanks so much for that Mr Burstow: personal annihilation, not personalisation more like, and another few million people who definitely wont be voting for you and the conservatives come the next election...


  1. A friend just alerted me to this post - what's happening is really, really shocking. Have you considered contacting a solicitor, I know that sounds a bit extreme, but what you describe sounds to me like something called "fettering". That's when a public authority applies a blanket policy to how they discharge their duties (in this case "we don't do laundry", etc), without regard for the individual circumstances. You might want to look at the criteria on p21 of this document, because I think your laundry, dietary, heating and medical appointment needs sound substantial/critical, and therefore eligible for services:

    If you want to contact a solicitor, this guidance lists some at the end:

    You could also try calling your local DIAL helpline for advice:

    And it might be useful to you to get an advocate to support you, as it's hard work complaining. You can locate one via this webpage:

    Good luck, this sounds awful, but I think you may well have good grounds to challenge this decision.

    1. Thanks for the info.

      Sorry I didn't reply earlier; I've been really ill this last month.

      Will look up the various documents you mentioned. I think they're trying to argue that I do not have substantial needs, but I'll find out more in 2 weeks.

  2. I agree that you should challenge the decision - are there any service user groups in your area that you could get advice from? What it seems is happening her is a muddling up of your needs (eg the need for assistance with personal hygiene) and the services that you need to meet those needs. Just saying 'we don't provide laundry' is, as Lucy says above, fettering their discretion. You might find it useful to look at the exact wording of the Fair Access to Care criteria, which sets out what makes the difference between critical and substantial in terms of the risks to your independence if your needs are not met - then you can use the wording to argue your case.

    1. Thanks very much; I'll be doing that.

      The assessor said how well I looked; as if that has anything to do with what I'm capable of! It's more that I cannot continue to sustain an activity over time; just because I can get up and down from a chair, with difficulty, doesn't mean I'm fit to do my own laundry!

  3. Thanks for taking the time to write this post. Your situation is appalling and I hope you will consider taking action.

    Disability Rights UK has published a guide recently on how to challenge cuts decisions - you can find it here: http://www.disabilityrightsuk.org/usingthelawtofightcuts.htm

    If you have a local User-Led Organisation, it would also be worth contacting them.

  4. I wrote a response to this post (as a social worker) here http://notsobigsociety.wordpress.com/2012/07/27/the-human-cost-of-cuts-in-social-care/

    I can't offer any practical advice other than that which has already been given except to contact your local MP/councillor - at least then the social services dept will have to explain why this has happened.

    Good luck. It makes me feel ashamed to do the job I do.

    1. Thanks; I wrote a reply underneath your article. It's good to know that many social workers are trying their best to do the right thing for people, and appreciate that disabled people need more than just being clean and eating; we do as much for pets, but we are aware that they need far more than just that: how much more does a human need?

  5. I'm really saddened to hear about the situation you've been put in by the LA. I don't have any more practical advice to offer than the 4 previous comments but I just want to say, hang in there! I realise it must be extremely demoralising to be treated in this way, but try and make your voice heard people out there will want to fight for you!

  6. I am saddened to read about what is happening to you, and I can't offer any advice other than the previous comments made. So I've done the best I can think of - I've sent my MP a link to your blog and asked him how he feels about it. Hang on in there. If those members of parliament really do represent our best interests, as they claim to do, and if they really do care about people with needs, as they claim to do, we'll hopefully be able to make them understand that they've got to change their priorities and make 'systems' work for people first. Only if the systems work for people will they work for the bean-counters.

    1. Thanks for that. I'm really touched at how people are trying to help. I didn't even think anyone would read my blog, let alone offer such support.

  7. Hello,
    It's Mithran Samuel here from Community Care. Really powerful post and so very sorry to hear about what's happened.

    Just to say that I contacted the council for a comment and received the following:

    “The county council has no policy that prevents direct payments being spent on meeting a person’s substantial or critical assessed eligible needs.”

    I don't know whether the council is arguing that the needs that you are not being funded for are not substantial; as Lucy says in the first comment above, it sounds like they are. They're not able to go into the details of an individual case with us.

    Do keep us posted with how things go if you can. Good luck.

    1. Thanks Mithran.

      Yes I think that they will be arguing that my needs aren't substantial, but with the care package they put together 6 and then 3 years ago, they must have considered my needs as substantial at that time; it's just that they've changed what they will actually fund.

      I know the complaints procedure, but what worries me is that they will remove the care during that period, which will land me in deep trouble, especially when winter comes and I can't fetch coal in. I could be left physically unable to follow through with the complaint. For example, I did an experiment after I wrote this post and tried to do just a fraction of what my carers do. It put me in bed for 10 days.

      Well I'm going to try, and thank you again for doing what you did. I do wonder if the delay in finalising the care plan (they said they would contact me 5 weeks ago, but only left a message for me last Friday), has something to do with this blog, so I hope I haven't put my foot in it!

      These things need to be said though whatever the personal cost.