The 'C' Word VI: Crisis

Posted by Jenni Remnant and Libby Morrison

The Age UK Care in Crisis Report 2014 highlights the problem in Health and Social Care across the country with cuts in real terms; most councils are now only covering critical care criteria, so that those people with moderate needs will not be entitled to help.

Newspaper headlines shout out about the looming national crisis in care and public health for the elderly, and particularly the ‘ticking time-bomb’ of dementia. The number of people living with dementia looks set to rise year on year. How will our health and social care system cope with this – is crisis inevitable?

What perhaps isn’t highlighted is how, as with any crisis, it is a collection of individual experiences of people living with dementia and their carers.


An aged but blank piece of paper - having all the experience and history, but none of the words - because that's
 what dementia and Alzheimer's patients can seem like. It's there in the book, but you can't read it off the page.
 

The following diary extract is by someone recently caring for her elderly parents. Her mum was the main carer for her dad who was in late stages of dementia. Her mum had refused most offers of help as he was ‘HER husband’ and it was ‘HER job’ to care for him. She had become increasingly tired, and confused herself. The extract covers one weekend in crisis.

Friday

4.30pm
I went round to Mum and Dads to bring them some cakes I had made. I was met with a scene of chaos. Mum had packed up suitcases and bags which were stacked up in the living room. "What are you doing Mum?" She replied: "We don’t like this house, we are going back to our old one." I tried to explain that she couldn’t go back to her old house; they had sold it 7 years ago. There were pills in different bags, piles of notes and coins, clothes, rubbish etc. Dad was agitated of course, pacing up and down and making his ‘um um’ sound. Oh god what to do – Jessie is due back from school, the dog needs walked, I have a conference to go to tomorrow – I unpack all the bags and put everything away, make them tea and toast and promise to come back. Beg Mum not to leave the house with Dad. Run home make tea for Jessie, and walk the dog.

Dad once led a campaign to save the local library – and succeeded.

6.30pm
She's packed all the bags again and says her and Dad are leaving the house. She has drunk some whisky and possibly taken her sleeping pill. If I phone the GP or 999 they will probably take her to hospital – what then for Dad? He needs 24 hour care – where would he go? I have no space in my house and I need to care for Jessie and (just as an afterthought) go to work tomorrow! How can I do that – how can I not? If I don’t go into work I won’t get paid (care work – poor terms and conditions – ironic!). But the thought of Dad getting sent to any old place in an emergency, scared and alone, I can’t do it. Maybe if I can get them both to bed and to sleep, Mum might be better in the morning. Phone my sister and aunt to see if they can help tomorrow while I go to work. Ask my friend if Jessie can stay over with them tonight. Go to make a cup of tea – there is urine in the cutlery drawer – Dad has taken to peeing randomly in unexpected places. Clean out drawer. Make tea. Dad makes his ‘um um’ noise rhythmically and noisily – it drives me mad.

Dad was a school governor. He fund raised and campaigned to get new facilities and buildings for the local school.

10pm
They are both in bed (for how long is anyone’s guess). I make up a bed on the sofa and write this diary. I can’t sleep, although I am very tired.

3am
Dad is in the kitchen – peeing into a pie dish in which my aunt had brought them dinner yesterday. I clean up and lead him back to bed. He doesn’t object (thankfully).

Dad used to play tennis and rugby and was a big football fan.

Saturday

9am
My aunt arrives so I can go to work. Mum is a little better, seems less confused and has slept well. I hide the whisky before I leave. My sister and aunt go in to see them 3 times today. We have agreed to try and manage the situation until Monday, when we have a pre-arranged meeting with Social Services anyway as problems have been mounting over the last few months.

Dad set up and ran community education classes for local people.

6pm
Things are a little calmer tonight. Mum is clearly still confused but more reasonable. I cook them both tea. My aunt phones for an update. She says: "I didn’t think my toad-in-the-hole was that bad" when I recount the story of the pee in the pie dish!! We both laugh at that. But then I find myself in floods of tears – go upstairs quickly so they can’t see.

Dad has a glass plate which was presented to him for donating blood 75 times – there is a little certificate too.

9pm
I have given them dinner and we have watched a bit of telly. Mum doesn’t seem to know where anything is in the kitchen. Should we phone the doctor anyway? They will try and get us to bring her in to see them (I know of old). But that means bringing Dad and that means…….. oh let's leave it until tomorrow.

Dad loves singing and all sorts of music. He was once a choir boy in a big church in Edinburgh.


This is only the briefest of insights into the personal dimension of the impending dementia crisis, but in this limited glimpse at the nuanced and emotive narrative, it is already painfully obvious how much of a challenge public health professionals and researchers, and the health and social care structures in the UK have on their hands.

The C word V: cooking

Posted by Jenni Remnant and Libby Morrison

We all know that two key elements of public health are what we put in our bodies (food, alcohol, cigarette smoke) and the environment that surrounds us.

When you’re a carer, to a point, you can often find yourself responsible for what someone else consumes, and the effect the environment has on them. Quite a responsibility.

And the way, as carers, we respond to this responsibility is incredibly varied.

Service users in care can be fed unhealthy and highly calorific meals through a desire to ‘mother’ and ‘feed up’. Many mental health service users I’ve worked with live on ready meals (my inspiration for the topic of my Msc dissertation last year) which have been found not to fulfil dietary requirements suggested by the Food Standards Agency.

Though I hate using the word, and emphasising that this is only in my experience, there are a number of carers out there, both informal and paid, that can be quite ‘mumsy’. Meals are often very traditional, and full Sunday roasts with all the trimmings are sometimes enforced, even in single occupancy services.

I have worked with a number of service users with high staff ratios due to ‘challenging behaviour’, and they have been quite similar: the service users are often overweight. This is problematic in terms of the health of the service user and the carer – the regular violence that is often an acknowledged part of a service user’s communication can lead to a carer having to deal with 20+ stone of angry person.

  

In one circumstance, a plan was formed based on improved health outcomes - for the service user and staff involved. All the full-timers at this service were given a specific responsibility, and mine was ‘food and exercise’. I downloaded a copy of the Bristol stool chart (a carers best friend), booked our service user an appointment with a nutritionist and started to write weekly shopping lists and menus. We identified, and were supported by the nutritionist in our assertions, that our service user was heavily constipated, and this was causing them some distress and was likely to be contributing toward some, if not all, of their violent behaviours.

Putting together a healthy living plan was interesting. One of my colleagues was a supremely talented cook, and made unbelievably delicious food, but had a very different idea of what ‘healthy’ was to me. Something I’ve heard a lot at work, and which my brother now believes as gospel, is that pasta is healthy - in any dish and any context. Divine though my colleague’s macaroni cheese looked – it had three cheeses in, butter and sometimes even cream – I’m not sure it ticked all the nutritional boxes one might hope in a meal, and might also go above recommendations in terms of fat. And the portions! Portions so mammoth you’d wince to look at them.

So, very slowly, we started introducing more fibre into the menu, and green things; while also limiting, but not removing, gluten and sugar. There was a rule that every meal must have a minimum of three natural colours in, not including white, beige or brown. I should note here, that this service user, as with most of the challenging service users I have worked with, was non-verbal – and only provided very limited feedback.

There was a lot of criticism. The most common one was that the service user was being made to follow a vegetarian diet without consent. Which I’m afraid I mostly rebutted with ‘so at what point was their consent gained to eat meat?’. Though actually the new diet did contain meat, just far less than before.

Some of the team thought it was wrong – that this person had a life with such few pleasures in it, bar eating, that it was border line cruel to take that away. I found this difficult, because I used a lot of recipes and meals that I ate myself, and felt that any criticism of the food served was a criticism of my personal lifestyle. But it also contained so much assumption – how would we know what this person preferred? We tried very hard to see if there was any difference in the gusto with which a piece of carrot was eaten or a piece of chocolate – and could find none. The only discernible preference, as I’ve often found in services with adults with sensory impairments, was for something with a bit of crunch.

This service user often stared at sweet treats in shop cafes or by tills on the way out of shops (why is it ALWAYS huge mounds of cake? Or chocolate?). Often this would happen and someone on the staff team would say ‘they’ve seen it now; we’ll have to get it’. This service user very soon came to realise that this was an efficient way to get food – because of this we couldn’t go through the checkout with them, without some kind of calorific edible having to be bought and consumed every time. The combination of ‘guilty checkouts’ and staff anxiety ‘created’ this negative pattern of behaviour, which in turn impacted on the healthy eating regime that other staff were trying to implement. This resulted in the loss of the daily interaction of buying groceries.

Eventually, when the team pulled together, with compromises made on ‘both’ sides, the service user lost 3st 4lb in a year, episodes of challenging behaviour went down from 4-8 per week to 1-3, and bowel movements were frequent and far less explosive than they had been. Happiness is a non-explosive bowel movement. The social interaction aspect of grocery shopping for this service user was hugely limited – and at times the staff team totally and utterly divided.

There is no right and wrong in this anecdote. I can say hand-on-heart that I know for sure that the staff team all wanted what was best for our service user; we all just had very different ideas about what ‘best’ was.

Policy within care is full of personal outcomes that centre on choice and independence, which can make public health interventions less accessible. Especially in the example given above, where the service user was written out by our models of ‘best interest’ decision making. I certainly don’t have a substitute model. A significant public health issue is how to engage with carers. Carers can sometimes have absolute control over another human being, no matter how we dress it up to suggest otherwise. How do we make sure that clear public health messages are being communicated and instigated by carers without further surveillance and pressure being placed on an already incredibly pressured role?

The ‘C’ Word IV: Challenging (behaviour)

Posted by Jenni Remnant and Libby Morrison

So, the word ‘challenging’ is used primarily to describe aggression in learning disability and mental health settings. It keeps the focus on the service user, as is standard (see ‘Person centred planning'). But I would like to consider ‘challenging behaviour’ in terms of being a carer, and in terms of public health and public health research.

Though ‘challenging behaviour’ tends to describe a certain type of behaviour, personally I find a lot of behaviours challenging as a carer – and I expect that others sometimes find my behaviour challenging.

In 9 years of caring for people I have had excrement thrown at me (once an absolute money shot got me square in the face), I have had my hair pulled with such force my scalp ripped, my car has been attacked with a plastic tennis racket, I have been threatened with a kettle of boiling water and a hammer, in addition to being spat at, chased and verbally abused. In many of these roles I was paid a higher hourly rate (one motivation for working in these services) of up to a couple of pounds over national minimum wage. Peanuts to cashews if you will.

This of course is challenging, but I knew exactly what I was signing up to, and if I’m honest, I like it. I imagine this is wrong on a number of levels, but I liked it when people were angry, because a lot of the time I felt they were justified in it. What an oppressive system they live in and are forced to submit to. Admittedly, I like it less when the anger is directed at me, but personally, I find it easier to feel genuine respect for those who fight.

There are two levels to what I personally find challenging. One is a collection of behaviours from service users. The other challenge comes from being angry at myself and feeling guilty that though I can understand and rationalise on a theoretical level that I shouldn’t judge or feel negatively towards people, I can’t feel it. I get so frustrated when I’ve suggested someone goes to the toilet and they say that they have when they haven’t, defecate instead on their bedroom floor and laugh while you clean it up. I feel humiliated when someone starts to masturbate when I try to give them support cleaning their bedroom, go to the supermarket or cook their breakfast. I feel disgusted when someone accesses porn that simulates rape. I feel scared when I’m lone working and a service user follows me around a service. I feel angry when I get a service absolutely spotless and someone tips instant coffee all over the side and doesn’t wipe it up and it goes into those horrible rock hard little lumps on the side… the list, I’m sorry to say is endless.

I worry that it is obvious when I am getting frustrated. A service user once announced to me “I have rights” when I asked, for the fifth or sixth time that day, to use the toilet as he hadn’t been for over 8 hours. He spent around 30-45 minutes in the loo each time, but didn’t use the toilet, with me outside the toilet issuing instructions. I agreed with him – I told him about Maslow’s hierarchy of need, and took from my pocket a summary of the universal declaration of human rights (I always have it on me at work), and in that tired, frustrated, trying-to-maintain-the-appearance-of-calm way, that absolutely patronised him and highlighted that in this situation I ultimately held the balance of power – went through them and explained how trying to support him in hygiene was not relieving him of his rights. I was angry at him, I was angry at myself.

The other challenge is where to go with the above information; who wants to hear that carers are human and get challenged? Which local authority wants to hear that a *free* informal carer finds it challenging to look after a husband who no longer recognises them? What manager wants to hear that you were woken up 6-7 times through the night on your sleep in shift and so feel too tired and drained to work through the following day? Your mental health as a carer is under strain. I currently do less than one shift a week and still sometimes struggle.

Then there’s your physical health – despite meticulously clean staff teams where I have worked, I have often worked with people that for whatever reason do not wash. People that I have worked with have often not washed their hands, don’t shower, and don’t do their dishes. Sometimes when they do their dishes, they don’t do an amazing job. It is patronising and disempowering to re-wash people’s dishes for them. I take in my own cutlery and crockery – and have been pulled up on it a number of times because it’s insulting and stigmatising.

There is a huge amount of surveillance around caring, in addition to judgement. Sometimes it feels so hopelessly fruitless – permanently rolling a stone up a hill for it to roll back down again a la Sisyphus.

What does this mean for public health and public health research? To me it means a necessary interrogation of the homogenising of service users, and the black and white dichotomy between informal and paid carers. An interrogation of the system that removes power and control from a huge number of people – and that’s not even starting on the lack of decent union representation and zero hour contracts – but how?

What are the right questions? I don’t know what the desired outcome is other than that beautiful idea of health equality and social equality for service users and carers – or how as public health researchers we would approach this messy and difficult area and do it justice – but we probably should.

I was very excited to see that Fuse has been advertising a PhD studentship that focuses on carers, and will be fascinated to see what is learnt from that.

The C word: consent

Posted by Jenni Remnant & Libby Morrison

This is quite personal as it is about my brother James, who has Down syndrome. In terms of consent to me blogging about this – I have discussed it with him at length and he has no issue about being identified. We decided that it was important the fact that he is my brother stays in, because this isn’t a story about ‘other’. 

Given what I have said above, I can see the contradiction/irony in that this post is, at least in part, about my brother’s lack of understanding of the word ‘consent’. Said in the right tone of voice and body language, my brother would say yes, or no, to almost anything; ‘you don’t want to do that do you?’, or ‘to be really independent* you need to….’, ‘now it’s your choice, but if I were you…’. He is totally and utterly committed and invested in the language of societal norms and government rhetoric – unsurprising when you consider that though much of the improvements gained for disabled people have been led (quite rightly so) from the front by people with physical impairments, the steps for learning disabled adults have been half hearted and almost entirely state-orchestrated.

Often I hear my brother and his friends say things like ‘real men drink beer/have girlfriends/ [insert hetero-normal masculinity based stereotype here]’. When out with him, women have cooed over him, leading him to believe that he is a ‘ladies’ man’. He believes Del Boy is a role model and style icon and has not understood that he is a comedy character that people laugh at. He has had no other option than overtly straight masculinity by which to define himself.

It’s strange, because actually I’m not sure that in another life he would be any of those things. Though I wouldn’t dream of conflating being camp with being gay, he is nevertheless flamboyant, adores musicals and, more significantly, has only had enduring meaningful companionships with men. The relationship he has with his ‘girlfriends’ involve being chaperoned maybe once or twice a month on ‘dates’, and perhaps bumping into them at day services or social clubs. One thing that can be said for the social world provided for learning disabled adults is that it is virtually defined by an obscure heteronormative asexuality (see Murphy 2003, Brown 1994, Yar & Rafter 2014 for more on this) that has resulted in James being a homophobic chauvinist that is terrified of his genitals and what they do. He also desperately wants to get married and have children. I wonder what consent means in terms of his sexuality. Tokenistic as it is.

To give meaningful consent to sexual acts, research participation or medical treatment has some requirements. It requires that those in the position of power (everyone else if you are someone with a learning disability) ask for it. They have to value you enough as a human being to support you in decision making, and provide you with the knowledge necessary to be informed.

James would probably be considered a ‘hard to reach’ participant in public health research. Which is ridiculous – he’s an extrovert – he’d leap at the chance to be involved in anything, he is desperate to be valued. It would take time and resilience on the part of the researcher to peel back the layers of rhetoric he is so programmed to regurgitate, ethical clearance would probably take some time – or would certainly have that presumption made about it, and perhaps this is why he, and the diverse, interesting and knowledgeable population of learning disabled adults is so neglected in public health research. ‘Hard to reach’ is ill-fitting, ‘easy to ignore’ is what he is.

*increase in ‘independence’ often equates to a decrease in support hours for adults with learning disabilities which can be a difficult concept to balance.

Today the ‘c’ word is – choice.

Posted by Libby Morrison & Jennifer Remnant

Choice is a buzz word, much favoured by politicians. We are continually being offered ‘real choices’! In learning disabilities, choice can be a difficult and complex thing, often linked to other ‘c’ words like ‘capacity’ and ‘consent’ These other ‘choices’ will be examined in further blog posts. But today I will be considering every day, common or garden choice.

When I first began working in the Health and Social Care sector 16 years ago, I very quickly became aware that many service users chose the same things. Of the nine residents in the first care home for adults with a learning disability that I worked in, ALL watched Coronation Street AND Emmerdale. In the next care home with three adults with a learning disability, again all watched Coronation Street and Emmerdale. In fact by the fourth and fifth place I worked in I had realised that it wasn’t just soap operas that all the service users watched, it was specifically ITV – unless it was Strictly on BBC1,  obviously! So despite the ‘choice’ word being used all the time – it was a key area in the 2001 Valuing People white paper – I began to suspect that television viewing might have been more to do with the carers' choice, rather than the service users.

Call me a cynic if you will.

It was the same with music, cinema, theatre and shows. If I look through my local theatre’s programme of events, I can tell you exactly which shows all the people in my area with a learning disabilities will be at. Because it is a FACT that adults with learning disabilities ALL love Elvis Presley and Abba tribute bands! Yes they do. Also all people with Down syndrome are very happy and smile all the time – especially when they are taken to see Abba tribute bands!

Call me a cynic if you like.

I worked for 10 years with a remarkable woman, who had a mild learning disability. I thought that I knew her quite well – her likes and dislikes etc. By chance one day in my car I put on a classical music programme. Almost immediately she began humming along to a Beethoven piece. I asked her how she knew it, and she said ‘oh my Dad used to play it on the piano. I love that sort of music’. I had had no idea. I began to take her to see some classical concerts – which she loved, especially pianists. She recognised a piece of music one time as coming from Swan Lake – I asked her if she had ever seen a ballet. She hadn’t, so we went – she loved that too. I asked another carer if she would like to accompany this service user to the ballet – ‘Ballet? – bally awful more like’ she said. 

Call me a cynic if you must.

I was guilty myself of limiting this service user’s choice. Not knowing a great deal about classical music myself, I generally suggested well known pieces of music, thinking that she would not enjoy more modern and perhaps challenging composers. In fact it was me that struggled with modern classical music. When at one concert there was some Benjamin Britten and Peter Maxwell Davies, she turned to me with shining eyes and said ‘I could have listened to that all night’.

Real Choice.