Learning disability

On trying to do therapy when your patient has no food or money

Last week, I called someone I was due to see that afternoon to remind them I was coming round (standard practice in learning disability, and good practice in general). ‘How are you?’, I asked. ‘A bit pissed off’, they said. ‘I’ve got no money and no food’. I couldn’t get much more information by phone, but assured them that I’d be over shortly and that we’d sort something out.  In the meantime, I had a chat with this person’s care co-ordinator (one of the benefits of working in an open-plan office with your colleagues) and we made a referral to Social Services because this person didn’t have a Social Worker. In fact, this person has little support, despite needing quite a lot, because when they moved area they didn’t know how to get that support moved with them. As a result, there is a constellation of difficulties: mental health, physical health, financial. I took the referral for a distinct mental health problem and am probably the professional they know the best. I seem to have become a demi-care co-ordinator, telling the actual care co-ordinator what the problems are. Which is fine – I’m happy to do it, but it makes me furious that I am the best option this person has, because it’s not my area of expertise. I don’t know about district nurses or benefits. But at previous appointments, this person has been worried by ATOS assessments. There is no way this person could work, but ATOS sent a letter with an appointment for an assessment. This person forgot to go and was terrified their benefits would be cut. I dealt with that, and it seems to be fine for the moment, but suddenly this person had no food.

So off I went to see them. This person and their partner had had their benefits cut. They had no money. Their phones had been cut because they couldn’t buy credit. They had no food and no benefits were due for five days. They already owed the local shop for food and the owner would give them no more credit. They had no friends nearby and no family who could help (not that they could contact them anyway). I offered to call their friends/family when I got back to the office to see what I could do, but there seemed to be little else I could offer. Then Social Services called and the person I was seeing asked me to talk to them. I explained the situation and tried to see what we could work out. They could apply for a crisis loan, but had to do so by telephone or online (as if that was an option). No social worker would be allocated until Monday and they apparently couldn’t help with money problems or filling out forms (as an aside, in one of my previous jobs, I was told that social workers couldn’t help with housing any more. How, exactly, does this help the people we work with, most of whom have money or housing worries and lots of whom can’t manage forms without support?). I got, I confess, a bit shirty with the social worker. I think social workers do a really hard job, and I would never want to be one, but I get so FRUSTRATED at the way the system seems to have been designed by some Kafkaesque entity which declares that the more help you need, the harder it must be made for you to be able to access it. In the end I agreed to make some calls when I got back to the office and we tried to do so some psychology (you know, my actual job). It was ridiculous, of course. If basic needs haven’t been met, what the hell is a bit of therapy going to do? Nothing. Not a jot. But it was our last session and we had to tie up some loose ends. So we tried. And I felt stupid trying. And all I could think was ‘if only I could give them a tenner’. But I couldn’t, for lots of reasons, which even now I find hard to justify to myself. And I hated myself for it.

So I left, promising they would get a phone call as soon as possible. I got to the office and phoned the Council Food Bank department. I requested a voucher and persuaded them to give extra food for another adult who happened to live at the same property (which they don’t usually do). I spoke to a delightful person who was very accommodating and who didn’t make me beg (though I was more than prepared to beg, shout or emotionally blackmail) and I then called my patient back and told them to get to the Town Hall before five to pick it up. Even so, all the food banks were closed (they only seem to open in the mornings) so they may have been unable to get food until the next day. The only option would have been the Salvation Army or similar, but, again, I don’t know enough about the services available to be much use.

This makes me furious. This person has a learning disability and a mental health problem. They are vulnerable. They find it hard to access services. They cannot fight without help. To them, the system seems impenetrable. If neither I nor my colleagues had been there when Social Services called, who would have dealt with it? Who would have called the Council? Would they have slowly starved over the next five days, a little like this gentleman, who died as a result of ATOS and their ghastly assessments?

In my line of work, we see people who need help in all sorts of areas. People with mental health problems are more likely to have a whole raft of other issues, such as poor physical health and social isolation. They are less likely to be able to work; more likely to be dependent on the decency of the State. Unfortunately, the State does not treat these people with much in the way of decency. The Bedroom Tax, the cuts in Housing Benefit, the scum at ATOS; all of these are making life Hell for vulnerable people. Half a million going to food banks! In Britain! It’s a a national disgrace. And somehow we’re expected to treat depression or panic attacks or help people with the voices they hear. How? If you’re cold and hungry, panic attacks become rather less of a problem in comparison.  But the dilemma is this: we can say such people are not ready for therapy and reject the referral, or we can accept it knowing that we can’t do much about the mental health element but that we can do something about the other stuff they’re having to manage. And, actually, that shouldn’t be the choice.  There needs to be a decent system of support that can help with housing and money and forms.  But until there is, people like me, who are a bit crap at that kind of stuff, actually, because we only have the faintest notion of what it’s all about, are the best option. And that is also a disgrace.

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On learning in learning disability

As part of the requirements of qualification as a clinical psychologist, you have to do a number of clinical placements. In the UK, one of those must be a six-month stint in learning disability.

I came into clinical training through a fairly unusual route, which meant that I had very different experience from that of many of my colleagues. One of those differences was LD – I had never worked in LD services, although I had worked with people who had some cognitive impairment. The criteria for LD are that you have an IQ (a controversial topic in itself) of 70 or less, that there is some difficulty in functioning, be that in academic settings or otherwise, and that the difficulties are not the result of illness or a head injury; i.e. that they have been present from a very early age. (In the US, the term ‘learning disability’ is often taken to mean something like dyslexia or dyspraxia. In the UK we refer to these as ‘learning difficulties’. It is not an easy distinction to remember, and even clinicians get the two muddled from time to time.) I was, it is fair to say, going in with little prior knowledge or experience.

Four months in, I think I’m starting to get a handle on working with this group of people. I am in a team which works with those with a learning disability and mental health problems. Not until I began to work in this area did I fully start to appreciate how marginalised some of the people I see are. I have long known that being perceived as having mental health problems can result in stigma and barriers and social isolation and I knew that having an LD was likely to do the same, but the interface of the two can sometimes vastly magnify the difficulties. This isn’t because of the LD itself, nor as a result of the mental health problem – it is purely the result of the way society treats those who are different and of the way that some vulnerable people are exploited. I use the term ‘vulnerable’ carefully – not everyone with an LD or an MH problem is vulnerable and many people with neither of those labels are vulnerable. But in the Venn diagram of such things, there is bound to be some overlap.

One of the things I like about my profession is that, despite having spent a good few years working across a range of services, I regularly get angry. Not with the people I see professionally, but with the people around them. The fact I can get angry about the accommodation in which someone lives or the staff with whom they have to deal or the neighbours who make their lives difficult means I still care as much as I did when I chose this as my career and that I still believe that change is possible. To my mind, it’s when you stop getting angry that you should re-think the way you earn your living, because that anger signifies a passion for your work. I think most people come into this kind of work wanting to change things (whatever those things may be). The focus might shift over time, in the way that most revolutionary aims change over the course of years, but as long as the will and the belief is there, you can make a positive impact on the lives of the people who come and see you. Virtually everyone who I have met who works in LD still has a desire to change things for the better. Sometimes that’s change which is recognised: those esteemed colleagues who write reports for the Department of Health and inform policy; more often, it’s the people who do their jobs, day in, day out, trying to help people in distress make their lives better. It can probably feel like you’re constantly pushing for the small victories, but as anyone in mental health will tell you, the small victories are necessary if you’re ever to snatch the big ones.

So what have I taken from this, aside from a better understanding of the impact that disability can have? Well, I’ve learned that even in an environment where NHS services are becoming more protocol-driven, there is still room for flexibility in service provision; indeed, you cannot run an LD service which is not flexible. I have learned that it is possible to get away from the language of psychology and psychiatry (a language I have always avoided, given that, like most specialist languages, it is designed to exclude those who don’t understand it) and make our ideas accessible to everyone. I have learned that writing reports is made far more fun when you use 100 words and fifteen pictures. I have learned that working in LD requires a particular skill set, but that like all skill sets, it can be learned.

And I have been reminded of something too. I have always said that my job is one of great privilege. Strangers come into my consulting room and they tell me about their pain and their distress and their fears. They show me their vulnerability, a vulnerability that is sometimes so raw that you marvel at their resources. I have often been amazed at the strength and grit of the people that I see; speechless at the difficulties that have encountered and which have threatened to overcome them, but which they have not allowed to do so. Factor in the added stress of physical disability and cognitive impairment, as well as the adverse experiences that can result, and I have been reminded of the strength of human spirit, the resilience that many of us have (but which we perhaps don’t know we have). And again, I marvel. And I think that with enough time and will, perhaps we will see the day when those with disabilities, of whichever variety, will cease to be marginalised and will be seen in the way the rest of us like to be seen: as human, with our foibles and neuroses, but with more binding us together than setting us apart.

This post is also due to appear at joereddington.com