Category Archives: discrimination

Choice, Control and Obfuscation – How the Personalisation Dream is Dying

In the bold move towards a transformation in adult social care, it feels from where I sit, that control has completely overtaken any pretence of ‘choice’ in the so-called move towards more idealised ‘person-centred’ care and support planning.

I hope I’ve been clear over the years in which I’ve expressed a remarkably consistent view that I love the idea of people being able to choose the support plan they like from a wide menu of options with ‘professionals’ taking less of a role.  I am a massive fan of direct payments. I want people to have more personalised care and more creative care. Desperately. The options just aren’t there yet for people who lack capacity and that is a terrible disservice and inequity that is being served throughout the care system.

Removing care planning from my role doesn’t concern me – unlike those people on the training courses who bang the drums blindly about how wonderful and bright it looks when we allow people to choice whatever they like to put together packages of care, I don’t want ‘retain control’, I truly don’t believe that I, as a professional ‘know better’,  but likewise I know that with the user group I work with, it is rare that I can just hand someone a support planning tool and a list of potential providers and tell them to ‘get on with it’.

That is as far from reality now as it was 20 years ago in my work. While I can say that everyone I care co-ordinate who has a ‘package of care’ is now officially on a ‘personal budget’ and some even have direct payments, it hasn’t really increased choice or control for any but a couple of those people.

If anyone for a moment wants to ponder the duplicitious nature of those in policy making ivory towers who dribble down policies which they want to couch in ‘soft’ language so they are difficult to challenge, one only has to read a fantastic piece of research conducted and published on The Small Places site.

It is worth reading through the piece in detail. Lucy, the author, made a number of requests to local authorities to ask about how their Resource Allocation Systems (the link between the ‘assessment’ and the ‘cash’ – basically) was calculated.  She seemed to come up against a wall of obfuscation but it’s worth looking at her research in detail.

This reluctance for me, seems to relate to the lack and reduction in spending on care and support – the key ‘missing piece’ as to why a council can ‘reassess’ someone as needing less ‘cash’ than they did last year with a more traditional care package.

My personal experience is that the council I work in (and this is similar to things I’ve heard from people in other councils) probably doesn’t want to share it’s RAS because it’s ashamed of the utter dog’s dinner that it’s made of it. It doesn’t ‘work’. It doesn’t make sense. It is frequently changed. There is more emphasis on physical health needs as opposed to mental health needs and while there can be manual adjustments, some of the figures that are ‘spat out’ just seem nigh on ridiculous (and that works for sometimes calculating care ‘too high’ as much as a figure which is ‘too low’).  It comes down to everything needing to be qualified and fitted onto a spreadsheet when actually the needs of two people who might fill out a self-assessment with the same ‘tick boxes’ might have very different needs in reality – no RAS can account for that. One person might under-score because they are embarrassed by the process and don’t want to admit to being incontinent on an initial visit from a social worker because they haven’t been able to tell anyone other than their GP – another person might be anxious and think they can manage less well than they can. Sometimes and this is what local authorities and health services seem to find hard to account for, you just have to treat people and their needs as individuals rather than the subject of outcome measures, tick box performance indicators or resource allocation systems.

Shouldn’t personalisation be about putting the user at the heart of the system? Every user should have a copy of the RAS and how the figure was determined. Which questions are weighted and which aren’t. Without that, there flow of money and the control rests solely with the local authority.

I’m fully against ‘traditional’ care packages. Having someone anonymous and constantly changing pop in for a 30 min welfare check once a day isn’t about improving the quality, control and choice in someone’s life, it’s about a local authority doing the absolute bare minimum that they can get away with to fulfil their statutory duties of care.

The lack of openness about the ways that the RAS shows the true colours of the reasons for these pushes towards the Eden of ‘Personalisation’.

While I have no doubt that for some people, as I keep saying, those with advocates, family or who are able to voice their own needs clearly, have and will continue to benefit enormously from having direct payments – it’s worth remembering that direct payments have been available and accessible for many years now.

Forcing everyone onto personal budgets has only discriminated against those with carers by reducing the amounts of money they are entitled to through the RAS (that’s my own experience of how our local RAS works) and has discriminated against those who lack capacity by promising all sorts of ‘creative’ ways of exploring third party management of support plans but without providing any real ways of accessing it (this is my current bugbear as I have been requesting assistance with this for months for service users I work with but have been told it is not possible for older adults yet as only those with learning disabilities have budgets large enough to make it cost effective – thereby clearing discriminating on the basis of age and type of disability).

I have changed from a fervent advocate of a system which was supposed to be so much better for everyone to a bitter opponent of a system which favours some kinds of disabilities over others, some kinds of service users over others, some kinds of carers (those who are willing to put a lot more time in to manage and support plan where necessary) than others and all to provide fewer services under the guise of choice.

No wonder Burstow is pushing everyone towards direct payments. He is pushing everyone towards a system which masks the way that payments are determined and discriminates openly against people who lack capacity or who have the ‘wrong’ kind of disability or family support.

Now we know that the local authorities can hide the way they make financial calculations, it becomes much more obvious to see behind the facade of the ‘Wonderful Wizard of Oz’ who promotes choice as the final goal to achieve at all costs.

I feel tricked and betrayed by the implementation of the personalisation agenda and the lack of any of the services around it to tackle directly with the problems at it’s heart.

I was deeply disappointed, for example, that the Mental Health Foundation’s ‘research’ and work with people specifically with dementia only focussed on people who either had capacity or had family.  Their advice talks lovingly of setting up trust funds, appointing brokers – well, that is a fantasy rather than a reality and exists only on paper as a choice. They merely replicated a lot of work which was done when direct payments were rolled out around lack of take up for people with dementia and they hadn’t said anything new (I happened to write my dissertation about the lack of take up of direct payments for older adults so did actually do literature researches at the time..).

Anyway, I’m getting ahead of myself.

For now, I think it’s important that we who see through the cosy policy makers congratulating about a ‘job well done’ speak up and speak up loudly for those for whom the system is a further barrier for true individualised care because these self-same policy-makers see them as ‘too difficult’.

My title explains that the personalisation dream is dying but it isn’t dead yet. To be brought back to life, all those involved need to embrace the principles of honesty and openness and not blind themselves to their successes if they can’t see the continuing barriers.

Benefits

I’ve made my position clear about ‘benefits’ over the year. ‘Benefits’ are not really benefits at all.

I decided to look at the meaning of the word ‘benefit’ and found (according to dictionary.com)

ben·e·fit

[ben-uh-fit]  noun, verb,ben·e·fit·ed or ben·e·fit·ted, ben·e·fit·ing or ben·e·fit·ting.

1.something that is advantageous or good; an advantage:

2.a payment or gift, as one made to help someone or given by a benefit society, insurance company, or public agency:

3.a theatrical performance or other public entertainment toraise money for a charitable organization or cause.

4.Archaic . an act of kindness; good deed;

Perhaps our national failing is that we still mentally see ‘benefits’ as a gift and not a right.  The payments given to those who have some form of need should not be considered as an ‘act of charity’ by government. It is money necessary to live not money in the gift of the government.

Sometimes language is and can be important.

By Cameron and his Conservative-led coalition like spreading the rhetoric that ‘benefits’ as well as ‘public housing’ should somehow be related to ‘good behaviour’.

This article for example as a case in point which explains

David Cameron wrote in a Sunday newspaper that he wanted to look at going further in welfare reforms, calling for the child benefit payments of parents who play truant from school to be withdrawn.

He suggested a more ambitious welfare reform programme when he posed the question of whether the government should be “asking much more of people on benefits who should be looking for work – or imposing even stricter penalties on those who refuse job offers?”

Cameron moves in a no-doubt electorally pleasing but morally questionable path.

Calling for the removal of child benefit payments to the parents of children who play truant is morally repulsive. It further impedes those who rely more heavily on those child benefit payments. Lets not forget that child benefit will be means tested soon (in a pathetically haphazard way but no matter). Where is the proposal for penalties for those parents who don’t receive child benefit and whose children play truant? Or do they really think truancy only affects ‘poor children’.

It insults our intelligence to make these proposals but they play very well to a public crowd that has been increasingly weaned to divide our own population into an ‘us/them’ dichotomy between those who work and those who do not work.

The government (and the previous government too) persist with a ‘divide and rule’ policy of presenting those who are not able to work against those who do work – well, we should never forget that for those us who aren’t party to the millions in trust funds that most of our government members grew up with – there is a extremely tenuous link between being a have and being a have-not.

The Guardian article goes on to quote Cameron saying

“What about welfare? The old something-for-nothing system we had under Labour had a poisonous effect on responsibility in our society. Again, we’ve already taken bold action – we’re in the process of moving hundreds of thousands of people who are fit to work off incapacity benefit and are imposing sensible limits on the amount of benefit people can take. But again, given the scale of the problem, can’t we go further? Say by asking much more of people on benefits who should be looking for work – or imposing even stricter penalties on those who refuse job offers?”

Something-for-nothing? Really? Personally I believe that people are entitled to a level of support from the state in order to live and that Cameron is playing games with words and assumptions when he appeals to the ‘Daily Mail’ reading crowd. He makes much reference to ‘benefit cheats’ as talks about ‘taking away benefits’ as if it is a reward that we had to well-behaved dogs and it is insulting in the extreme.

I those doubt that reforms are needed but the language in itself in invidious and pushes our thoughts to regard ‘benefits’ and ‘benefit claimants’ in a particularly unfavourable light.

And as an aside, as was pointed out to me, the photo in the Guardian article – well it has a picture of Charles and Camilla. Now THERE’S a family existing on benefits with absolutely no public gain and I think their social housing should be taken away for the genuine good of the nation. But that’s another question for another day..

Fixing the Broken not Healing the Wounded – a wrong-footed Government response

DAVOS/SWITZERLAND, 29JAN10 - David Cameron, Le...

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Our wise leader, David Cameron, clearly being an iconic Philosopher King, spent many days studying the possibly causes for the devastating riots in London and across England. He concluded after much intellectually rigorous pursuit, that the causes of the ‘sickness’ of Britain are – single parents and gangs aka ‘other people’.

Oh well, maybe he didn’t put quite as much thought into his words as I credited him for after all, he’s been toting those policy aims for decades. What more could we expect of him? Complex thought processes and analysis? Don’t be silly, he’s a politician who thrives on sound-bite politics that blames others.

I’m going to share a tiny bit of my own obviously clearly thought through analysis and that is this. There are no ‘easy’ solutions to the endemic problems that created a culture where people feel they can take what they want. This was not about ‘gangs’ although I’m willing to concede that might have been a fraction of one part of a ‘problem’. This is not about single parent families although yes, there may be people who are labelled that way. It seems that when our leaders set about scapegoating some of the voiceless citizens, we are heading for more divisions and damage than healing and unity which is what we really should be seeking. I’m not saying people should not be punished according to the law but they should not have new punishments invented specifically for them just to satisfy the vengence of the middle class who suffered for the first times when Ealing and Clapham burned.

These were Cameron’s words yesterday

Social problems that have been festering for decades have exploded in our face … Our security fightback must be matched by a social fightback,” Cameron said as he described the violent disorder as a “wake-up call” for Britain.

“Irresponsibility. Selfishness. Behaving as if your choices have no consequences. Children without fathers. Schools without discipline. Reward without effort. Crime without punishment. Rights without responsibilities. Communities without control. Some of the worst aspects of human nature tolerated, indulged – sometimes even incentivised – by a state and its agencies that in parts have become literally de-moralised.”

Setting out his personal priorities for government the prime minister promised he won’t be “found wanting”: “In my very first act as leader of this party I signalled my personal priority: to mend our broken society. That passion is stronger today than ever.”

There’s a lot here to get our collective heads around. A lot of dangerous assumptions and a clear view into the simplistic mind of someone who is supposed to be a leader and has proved himself beyond inadequate for the task.  The Financial Times for example, explains that these riots happened in a period where crime figures had been falling consistency? A moral breakdown? Perhaps not.

Irresponsibility? Like appointing a press secretary whom you have repeatedly been warned not to appoint and to continue to give him ‘second chances’ when you don’t consider second chances for the person who steals a bottle of water.

Selfishness? Like the MPs who gorged themselves on expense claims.

Behaving as if your choices have no consequences? Oh, well, for this one I have to reference the Iain Duncan Smith story from The Broken of Britain

Now, all those platitudes, we get onto the real meatiness that Cameron is gagging for.

Children without fathers? Excuse me? Does he realise how he stigmatises and chastises all the fine families that are raised by a single parent? Does he really think the presence of a man and a woman in a family unit regardless of whether they actually want to be together (the usual reason that splits take place) will ‘help’ the children? He is a fool and it is a dangerous message. Male or female role models do not have to be parents and unhappy parenting is not a useful environment in any circumstances. Cameron has his ideal of the perfect ‘Chipping Norton’ family just as he has his ideal of the perfect ‘Chipping Norton’ community. It is damagingly false and it seeks to further stigmatise and alienate those who for very many good reasons, do not conform to his traditional family view. Does he refer to families with two mothers or two fathers or single-father families? What about communities with extended friends as support? He is finding it too easy to paint ‘poor people’ with a brush.

Schools without discipline? Again an easy target. How about actually putting money and effort into the schools that exist then rather than trying to hive them off into ‘free schools’.

Reward without effort? Um.. Mr Cameron.. you know, you with the inheritence of millions. Can you tell us exactly what effort you put into the accident of your birth?

Crime without punishment? – Well, I suppose that depends on definitions but an awful lot of crimes seem to be getting some mightily grand punishments at the moment. Unlike the bankers who ravaged the finances of the nation.

Rights without responsibilities? Dangerous stuff here. See, he has been quoting that awfully subversive Human Rights Act. Possibly because he, in his privileged position would never have need to refer to it.

Communities without control? Interesting one. I wonder what exactly he means. Which communities are these? Poor communities? Communities of people with different minority ethnic backgrounds? Gangs? It’s pretty rhetoric and a nice alliteration but it is meaningless.

You see, I don’t believe Britain is ‘broken’. I think she is functioning as well as she can despite the government though. I think the more that the rhetoric fixes on the ‘sick pockets’ and less on the body politic the more she will begin to sicken though.

Cameron’s ‘solution’ to help to fix (note fix not heal)  this country is to bring in Emma Harrison from Action for Employment as a ‘Families Champion’. Really? That’s a bit patronising and it seems to dictate to us as adult citizens what ‘families’ the government approves of and disapproves of but back to Emma Harrison who has built her millions on the back of the government’s ‘Welfare to Work’ programmes. Is this really a call for more private profit-making?

What message does it send about making money off the back of so-called ‘broken families’ and trying to fix them?

For me, Cameron’s heavy-handed and quite frankly ignorant response to the riots is a sign of a far more broken element of British society. The ruling classes and their detached empathy sensors. That has already caused a lot of damage and is likely to cause far more in the future and we need to be wary of it and try and push the agenda towards healing rather than fixing.

Why Deaf Awareness?

This is a guest post by Suzie  Jones@suziejones2010 . Many thanks to her – cb

Why deaf awareness?

When you think about the people you meet and talk to in your everyday life, I wonder if it crosses your mind that one in every six has a hearing loss? That’s 10 million people in the UK and this number is growing steadily with exposure to loud noises at an ever younger age. Over half of people who are 60 or older have a hearing loss. (and one in six has a vision loss, that equates to approximately 2 million who may be partially deafblind).

So, what’s a deaf person? Most of you will think that someone is a deaf person because they use sign language. But you may be mistaken. There are an estimated 50,000 to 75,000 deaf people who use British Sign Language (BSL), the rest will be using hearing aids, cochlear Implants, speech and lipreading.

How would you recognise a deaf person? The most obvious clues are they don’t respond to noises behind them and may be looking at you intently when communicating. They’re lipreading, and some of them probably don’t realise they are doing it. If you see someone wearing a hearing aid, don’t assume they are hearing like you are. The majority of deaf people have what is called a perceptive hearing loss, this is permanent, and it makes sounds not just quieter, but distorted too. Have a listen to this simulation :

Blindness cuts you off from things, but Deafness cuts you off from people says Helen Keller. How true this is. Communication is probably the most important thing to a person. If you can’t communicate you get frustrated, lose your confidence, withdraw from socialising with others and some people become suicidal and think life is over. Friends and colleagues think the person is being rude, ignoring them on purpose, or is simply not interested in them anymore. Yet communication is needed to tell people what you want or need, how you feel and to take and give instructions. It is no surprise, then that deafness is a major cause of mental health issues.

So how can deaf awareness help social workers? The best deaf awareness training will equip you with the knowledge to understand exactly how deafness affects an individual and an understanding of the diversity of people who are deaf and how they react to it.

From those who think being deaf is wonderful, to the point where they celebrate the birth of a deaf baby, to those who literally fall apart when they lose all of their hearing, sometimes overnight. It will also give you skills to speak clearly, know tactics you can use to make yourself understood and show you why deaf people make so many mistakes in lipreading and appear to not understand you.

It’s not just about what you see on the lips, lipreading is only 30% accurate, the rest is intelligent guesswork and can be extremely tiring. Deaf awareness will also teach you about the support that is available to aid communication and access, from registered communication professionals to technological equipment, like loop systems, TextRelay and other aids.

Deaf people really do blossom when they are treated with respect and given the opportunity to partake in things that other people take for granted. Such things are opportunities to go to the local leisure centre, to go to social events, to attend a subtitled screening at the local cinema, or even a tour of the local museum.

If you know how to make these accessible, you’re on a winner. After all deaf people are legally entitled to these things, it’s a fact though that most of them still a luxury or out of arms reach for many of us.

Don’t think that we can “make do” using family or having a sympathetic friend to be with us to do this communication support. It’s not independence, it makes us “needy” and reliant on people. We have a right to make our own choices in life and the freedom to say so without being influenced by the opinion of others. That’s the difference between providing professional communication support or not.

So next time you see an opportunity to go on a course to learn about deafness, do take it up. Don’t think that by learning BSL only is going to make you “deaf aware”. It won’t. You need to know who you’re learning it for before you start. If you would like a course run in your local area, do get in touch with us, we are here to make things better and raise this much needed awareness throughout the UK. The more people who are privy to this valuable knowledge, the better we can all make life for the 10 million people who are living with deafness every day in silence.

Suzie Jones

www.deafcomm.co.uk

Making Adult Social Care Better 1

I think I’m fairly good at griping and raising ‘problems’. For the next week, I want to try and take a positive approach and look at solutions as well as problems.

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A few conversations I’ve had over the past week have focused on what is wrong with adult social work and mental health social work at the moment but more importantly what can be done to make things better.

My frustration is that for all the discussions that take place in the sector, so few seem to focus on those of us who have worked and are working at the so-called ‘front-line’. A home carer knows about the ways that contracts have been managed and awarded at the lowest cost and they will be able to tell you with far more insight than any contracting manager about the effects of 15 minute ‘spot’ visits and the lack of dignity present in the care for older people. They would also be able to give you an amalgam of ideas which branch from consideration, knowledge and experience of a wide range of service users.

Are employed home care workers ever invited to discussion forums and debates about the future of care? No. But you know, maybe the feedback would be the most valuable.

On a more personal level it feels as if the conversations about service design and delivery take place around and above us – with us being the people at the front line of support. Yes, there are discussions  with service users and carers but how much effort is made to seek out opinions that do not fit in the model that the consultants want them to express? How many of the people who attend these meetings, discussions and debates become self-selecting.

If you create a service user group, for example, in a particular borough, it seems to me obvious that you are most likely to engage will be those whose voices are already heard through different means.

I like to set myself up as some kind of advocate in terms of having an understanding of the needs of people who don’t often have their voices heard in these kinds of meetings and debates because the discussions I have are mostly with people who are at their lowest ebbs on the scale of health and need.

For me, it is crucially important that these people are not left behind by commissioners and service design but my experience and understanding of the sector suggests that they are.

I don’t want to keep harking back to the roll out of personal budgets on the back of the model of direct payments but I will. The voices of those without support and without advocates are understandably quieter and the way that the services have been designed focuses quite rightly on choice but what is not present is a way for an equitable service to be delivered to those who aren’t for some reason able to express choice.

So things that can make things better

- Use of advocates in a more formalised manner throughout the system. Volunteer advocates have a role but I see more mileage in professional advocacy with extensive investment in non-directed advocacy as that is potentially where the greatest need lies. If I weren’t so tied to my job in terms of needing a salary to pay the bills, I would, at a flash, try to establish some kind of enterprise to focus specifically on support planning and advocacy for adults with dementias. I hope there is a role for independent social work in this area in the future – in the meantime, if anyone wants to jump on my idea and run with it, I am happily ‘open sourcing’ it.

- involving front line practitioners in conversations, debates and discussions with the local authorities relinquishing some of the reins of power in respect to conversation. Recognise our professional vigour and competence. We see people and have discussions with people that will never attend forums collectively. We can signpost and support commissioners and contracting officers but we are never asked and never given the time to think more creatively outside our little boxes of control. We have ideas and a happier, more connected workforce is an engaged and interested one.

- speak to home care workers too – those with agencies and where in-house services still exist, with them. They will have good ideas about the ways that their services are failing.

- home visits to facilitate discussions – why have all meetings in a central hall when it can be limiting regarding those who have greater physical and mental health needs.

Technology can facilitate greater conversation and communication with two-way flows but face to face discussion is still very important as technology and keyboards can alienate some people – perhaps exactly those people whom it is most important to connect with.

-Practitioners have to be more engaged with developments in the sector and unfortunately I don’t see BASW or the embryonic College of Social Work being particularly engaged with social workers. Why have social workers become so disengaged from professional organisations and unions? Is it to do with a fear of employers? I think some more group action could really build the strength of social work but it is hard to shrug off the feeling that we are a disengaged and disenfranchised profession that like to feel sorry for our collective selves and wallow in our diminished status. I think if we took a stronger political stance and stood up to our employers and their political agendas and displayed more independence of thought, we would be able to demand more respect.

I have decided that while I can moan and groan with the best of ‘em, coming together with ideas for improvement is by far the best way of making our voices heard.

Elaine McDonald, Kensington and Chelsea and Dignity

Yesterday, the High Court ruled in the case of R (on the application of McDonald)  v Royal Borough of Kensington and Chelsea. This was a further appeal by McDonald against a previous decision at a lower court.

Elaine McDonald is 68 year old woman who worked as a ballerina in her younger days. The press seems to be a little fixated on her former career, and she does have a more glamorous background than many who come to rely heavily on social care so perhaps it is no surprise. Ms McDonald suffered from a debilitating stroke in 1999 and had a further fall in 2006 which led to very poor mobility.  Although not medically incontinent, she required assistance to use the commode during the night.  She had been provided with overnight support to meet her assessed needs related to continence during the night however Kensington and Chelsea were suggesting that this need could be met by substituting this assistance with the provision of continence pads during the night which would, by their nature, demand that Ms McDonald remain in these pads until carers could come in the morning and at intervals to ‘change’ her.

sulle punte

frabattista @ flickr

I wasn’t surprised by the decision by the High Court because there are precedents that led the access of local authorities to resources to be a factor in relation to the provision of services.

In my own working experience, it is impossible to access any kind of home care support overnight except in some very specific cases where there is very high need support and even then, it is much much more likely to be provided to younger adults with physical disabilities. I can count on the fingers of one hand the amounts of times I’ve come across local authority funded overnight support in the last 10+ years of practice.

Sometimes I have to take a step back from what I regard as ‘normal’ practice to understand the outrage at this decision. I realise how I become attuned to ‘local authority’ think and ‘budgetary’ think and that’s quite an uncomfortable thought.

We get used to applying different definitions of ‘dignity’ and what is acceptable because we are aware of the thousands of Ms McDonalds that require support and the existence of a  finite resource. So do you support the Ms McDonalds and assist them to provide a fuller and more dignified life at home or do you provide 8 Ms Smiths with respite care over the year. These are the realities of the decisions and it shouldn’t have to be so.

Perhaps that’s why I’m less surprised by the McDonald ruling and less surprised by it.

There are though horrendous inequities in our system of the provision of social care. Where Ms McDonald in Kensington and Chelsea may be receiving a vastly different service from a parallel Ms McDonald in Newham.  I would venture a guess that there are thousands of potentially very similar cases to Ms McDonald bubbling under the surface ‘in the system’ but because they are not ex-Prima ballerinas and don’t have the will, way and means to bring cases and involve solicitors, we will never know about them.

If anything is, quite literally, the ‘dirty secret’ of social care and health care provision particularly for older adults, it is this.

We have different standards of what we class as being ‘dignified’ for ourselves as for others. What might class as dignity to an older adult has less value and invites less spending to an equivalent younger adult with exactly the same care needs. Those who shout loudest get the most – as far as care is concerned and as far as public interest is concerned.  The shame and pity of the ‘personalisation’ agenda and the flawed implementation of personal budgets in social care have exacerbated this problem further rather than provided a channel to allow for a more equitable system of care delivery.

It sometimes feel cruel and harsh, because it is a cruel and harsh system that it perpetuated by discriminatory systems. Would the warehouse-style very large residential and nursing care homes with 100+ beds be acceptable for younger adults with similar care needs? I don’t think so.   I don’t mean to imply that every large care home is bad and every small care home is good. That isn’t the case. It’s about a fundamental reassessment of what is acceptable in the provision of care for older people in our society.

Lucy at The Small Places covers the issue of dignity through caselaw, in an excellent, thorough and educational post.

I make no apology for my less erudite post and thoughts.  The more I work and the more I reflect, the more interplay I see between the basic conceits of ethics and ethical judgement in the role that I play as a part of this system that condones this mealy mouthed interpretation of human rights merely on the basis of cost and resourcing issues.

It is accepted because our society is inherently ageist. We don’t want to think or pay for the care of older people. We care more about our collective inheritances and potential house prices than the more collective thoughts about where the boundaries of an acceptable level of care and dignity lie.

If anything, this has impressed on  me the importance of constant reflection on my practice and my work. I can advocate to an extent, from within the system, for the dignity of those like Ms McDonald and I try to. Some I win and some I lose but as long as I make my voice heard through every step of the process I can help to feed the voices ‘from the front line’ back to the more senior managers.

I make judgements and I am the mouthpiece of the local authority. I am an employee but the second that I become complacent, the  moment I stop reflecting on the effects the decisions I make have and the instant that I join that local authority ‘group think’, I lose my ethical compass and my professional judgement.

I talk a lot about important qualities of social workers and social care workers. Respect, empathy and to that I’d add advocacy. It might not always be seen in the internal battles that we fight, but we have to try to fight so as not to accept a ‘normal’ that is defined on the bank balance sheets of the local authority accountants.

Personal Budgets, Personalisation, Thoughts and Hopes

Yesterday Think Local Act Personal (TLAP) published the results of a National Personal Budget Survey.

The headline ‘results’ are of course overwhelmingly positive. Personal Budgets work. Direct Payments Are Good. Everyone is happy.
Questionnaire

jrambow@flickr

Is any of this a surprise though? We know that people who can and are able to manage (or have family members to help them to manage) personal budgets delivered through direct payments (where money is paid directly to users) prefer them to less flexible local authority provided care packages – particularly when the scope of local authority care packages is limited to agencies with block contract arrangements.

In Control – which publishes the survey – highlights the following ‘implications’ from the findings. The bold is a direct quote and the italics are mine.

Other implications that can be drawn from the survey results include:

  • Personal budgets work better for older people than you might expect and direct payments work just as well for older people as everyone else.

Who said we were not expecting personal budgets to work for older people? Does this make an ageist assumption and lump together all ‘older people’. Of COURSE they work as well for people who are 65 as they do for people who are 64 but what about people without capacity or who don’t have family or friends involved? What about a more subtle distinction between 65 year olds and 85 year olds rather than a blanket ‘old people’ response.

  • The processes used for delivering personal budgets are more difficult than they need to be and that impacts badly on carers and on personal budget recipients.

Did this seriously need a survey over three months to discover? You could have asked me three years ago and I wouldn’t have charged consultancy fees.

  • More work needs to be done to make direct payments more accessible generally but especially to older people.

This could have been written 6 years ago. We KNEW this from the roll-out of direct payments initially so why was NO WORK WHATSOEVER done around trying to work with more difficult to reach groups when personal budgets were being ‘piloted’. I really can say ‘I told you so’ as I begged our Personal Budgets roll-out team to allow us to pilot or be involved in the initial processes and they said our user group was ‘too complicated’. Heh.

  • There is a need to simplify and clarify the rules and regulations surrounding personal budgets.

So those are the ‘implications’ and forgive me my cynicism. I love the idea of personalisation. I want it to work. I want to work in more creative ways or outsource my work if necessary to other third sector organisations but this is not ‘different’. This is not ‘new’. I fail to see the value of reports and surveys that tell us exactly what we already know again, and again and again instead of actively trying to work with people who actually understand and know what is happening ‘at the sharp end’ to try and work out ways to improve outcomes for those who are not receiving direct payments currently.

So back to the report – which used a Personal Budget Outcomes Evaluation Tool (POET)

in total, 1,114 personal budget holders  completed the POET survey, including 832 returns from the 10 local authority demonstrator sites and returns from at least 76 other local authorities. 417 of these personal budget holders also wrote in a comment about their experience of personal budgets.
In total, 950 carers completed the POET survey,including 782 returns from carers in the 10 local authority demonstrator sites and returns from at least 66 other local authorities. 434 of these carers also wrote in a comment about the impact of personal budgets on their own lives

And

Almost half of people responding to the survey were aged 65 years or more (43%); the social care needs of working age adults (aged 16-64 years) were largely split between learning disabilities (17%), mental health needs (8%) and physical disabilities (25%).

I don’t want to play too many games with statistics but it would be interesting to know what proportion of people who meet the FACS criteria in total are over 65 and whether 43% is a proportionate figure in relation to total recipients of social care services. I think as well, to class ‘older adults’ as ‘over 65s’ is a little disingenuous although I know it is done because that is the basis on which statistics are given but it shows some of the ways that systems restrict and inhibit knowledge. It would be far more interesting to know the differences of take up of personal budgets between 65 year olds as opposed to 85 year olds for example.

And to some of the headline figures, that can catch the press attention – most people who receive personal budgets find there is a ‘positive effect’.

Looking through some of the figures, it seems that older people were much more likely to be receiving council managed budgets – you know, that ‘easy’ way of just switching around a bit of paperwork and making it look like there is now more ‘choice’ when in fact, the services and delivery is almost exactly as it was before the ‘change’.

As for the outcomes the report says

In terms of social care need groups, older adults tend to report less positive outcomes than other social care need groups in six out
of the 14 outcome domains

I find the report to be honest, a bit of a whitewash in itself. It is only accentuating the positives and like all discourse related to personalisation and personal budgets, seems to be going over all the same ground again and again.

People like choice, people like flexibility. Yes, and rabbits like to eat carrots. It doesn’t need a survey to tell me that. What action and money and research needs to be concentrated on is the HOW.

HOW is there going to be an improvement in service delivery to those who are marginalised in this process.

HOW are we going to wriggle out of the sham that is council-managed budgets while allowing those who need to have others to manage their budget and support their care to have the same access to quality care and personal assistants that those who are able to choose and decide have.

I’m rapidly coming round to the view that personal budget support planning needs to be moved out of the hands of local authorities who currently have no interest in the process except for meeting the government targets. Where is the innovation within local government for change? Sure there are people, and I hope to be able to count myself among them, who want to do a better job and provide a better service but the constraints of the type of job I am doing means that I can’t devote the time necessary to truly inclusive and supportive care planning so Mr G whose support plan I am writing up (he doesn’t want to be involved in the process as he ‘doesn’t like forms’ and can generally only tolerate conversations with people for between 5-10 mins maximum and that’s only if he’s known you for at least a year) does get a rushed service because I have to carry out Best Interests Assessments, do Mental Health Act Assessments,  complete reviews and CPAs, liaise with other professionals, arrange discharges from hospital for other people. Yes, it’s a little bit of wallowing in self-pity and I wholly accept that. We are all busy but local authorities have no idea if they want a quality support plan without changing the ways of working in any other respect. Where is the time to devote to Mr G’s creative support plan? Oh, well, we’ll just do a regular care plan and a managed budget. Should it be that way? How has the march towards personalisation helped people like Mr G? Mr G wouldn’t complete a survey about a personal budget even if he did get a letter. Letters worry him and he doesn’t have a phone. I don’t want the Mr G’s that I work with to be forgotten in the rush towards direct payments.

When I first attended training we were told that any additional time we might be spending in our day to day work on these awful process-driven systems would be made up by the amount of time we would save by people completing their own support plans and assessments without any assistance. That may work for some people and I hope it does but for most of the people in the team in which I work it is unfeasible due to the amount of people I work with who have high support needs and who don’t have the capacity to make decisions about their own care needs.

The survey angered me, in a way that is probably irrational. Partly because it seemed to have taught us nothing at all. And partly because again, I see no new thoughts and ideas about developing systems that will be truly inclusive.

HOW can social care improve for everyone. That’s everyone. Even those who don’t want direct payments. Even those who don’t have advocates. Even those who are self-funding their own care packages as the criteria for receiving government support rise higher.

Those are the questions I want Think Local Act Personal to answer.

I have my own ideas. I think there will be a movement to roles for professional ‘support plan advisors’ who aren’t necessarily based in the local authority – perhaps individual social work consultancies but there has to be a separation between planning and delivery and the cost of these services shouldn’t need to be met out of the personal budget itself.

First and above all, there has to be a consistency and a transparency in the way resources are allocated and if necessary a weighting towards people who need assistance to access the same kinds of services who have been excluded from the process and the benefits in the past.

A survey of the skills-base of professionals who do implement support plans needs to be undertaken to establish what is needed and what is important to have.

Maybe it is a professional type qualification or maybe not. There is not much discussion about what the role of the social worker should be in the process. Should we be the ones support planning? I think there’s a argument that a social worker is well-placed to look at building plans together in conjunction with a user and family member if necessary and setting up things like trust funds or managed local authority budgets but only if the social worker is removed from the local authority talons.  Maybe some kind of team of people with different kinds of experience and expertise working together with some background and training in non-directive advocacy for people who do lack the capacity to organise their own support plans. Perhaps the social worker or support worker in these new roles could have longer term relationships with the users and carers and wouldn’t feel so pressured by management if freed from the local authority reins.

But who is going to suggest and discuss the new ideas? Where do they go? Who will collate them?

While I see lots of discussions around me about personalisation, I see little that says anything other than it HAS to work because it is best for ‘people’.

I genuinely believe that is has potential to deliver a much better system but and this is a big but, there has to be more creativity and different kind of research that looks at new models and methods of delivery and consults people – yes, like me – who while being critical really really do want things to work better.

My criticism isn’t because I want to bury my head in the sand and ‘retain the reins of control’. I really don’t. I want to relinquish control but I want more than anything an equitable system that doesn’t fob off ‘more difficult’ service users with a second class service.

Learning Disability Week – Hate Crime and Hate Language

I know I’m a bit late to Learning Disability Week – which runs from the 20th June for.. well, a week but it remains a campaign and a group I have a great attachment to coming from years working with adults with learning disabilities before I qualified as a social worker.

The ‘theme’ if it can be called that, is a new campaign, called Stand by Me,  which is being run by Mencap to challenge and hopefully phase out hate crime which is targeted towards people with learning disabilities.
Lady justice - close up

 

raphaelmarquez@flickr

Apart from, I hope, creating more of a stigma towards those who might seek out and target people with learning disabilities there is a focus on the ways in which crimes which are committed are dealt with by the police and the criminal justice system.

Mencap share some chilling but sadly unsurprising real life stories from people who have suffered from hate crime.

While accepting this is slightly different, I have had difficulties trying to pursue prosecutions for people who have dementia and who are the victims of crime and abusive situations due to the way that the systems are currently set up. I hope there is more attention paid to ways that these processes can be improved for everyone.

Hate crime is an offence which is committed against someone on the basis of their membership of a certain ‘group’ in society be that on by their race, class, disability, gender, age, sexual orientation, gender identity and good old Wikipedia, gives an alternate definition of ‘bias-motivated crime’.

To call something a crime indicates that (obviously) there is a criminal act that has been committed for example, a physical assault but I think the discrimination and the effect of actions of hate towards those who have learning disabilities have significant effects on the way our society perceives some members of our society.

For example, name-calling. Verbal and emotional bullying. Laughing and pointing. This might not count as a ‘crime’ but as long as it is acceptable, it may lead to criminal acts. Those who talk about criticism of the use of certain words being ‘PC correctness gone mad’ would do well to remember that with disrespectful thoughts come disrespectful words and disrespectful and flippant words lead to disrespectful thoughts.

The more we create divides between ‘us’ and ‘them’ the more vulnerable we are to dehumanising ‘them’ and it turns to just a step away from the acceptable or non-intervention in a ‘hate crime’.

So for me, it is a very important campaign but must not just be restricted to those who commit criminal offences against people with learning disabilities. It must also be targeted at those of us who use flippant and insulting language to describe people with learning disabilities.

Someone who describes their phone as being ‘retarded’ because it doesn’t work (yes, that’s a real life example from someone who should know a lot better), that’s the first step towards dehumanisation and degradation of people with learning disabilities and yes, I was accused of ‘political correctness gone mad’ when I challenged this but I maintain and always will that the connection between language and respect are inherent.

So targeting hate crime isn’t just about systems and criminal offences although that is absolutely essential to target. It is about the people around us, the words we use and the respect we afford to other human beings. When we treat people with disabilities as ‘different’ or ‘others’ and dismiss them and their needs, we allow hate crime to flourish.

Human Rights, Home Care, Personal Budgets and Cost Saving

I read on the BBC website among others that there is a report suggesting that care provided in the home by local authorities to older adults may be overlooking human rights issues.

Old man exmouth market

Daniel2005@flickr

An inquiry into this  was initiated by the Equality and Human Rights Commission in November 2010 and will report in December 2011 but some interim findings have already been published.

I think the context in which the inquiry is taking place is crucial in times that Cameron trying to pretend that he invented the personalisation agenda and rebrand it as a version of ‘Big Society’.

The scope then of the Inquiry as to determine where the responsibility of the ‘public authority’ under the Human Rights Act actually lies and I’m going to quote directly from the EHRC (Equality and Human Rights Commission) as I think this is a crucially important point in the progress of personal budgets and home care provision (n.b. the underlining is my own).

The nature of social care is changing rapidly with a greater emphasis on personalised services and choice.  The majority of social care services are already delivered by private sector agencies, either via contract with local authorities or directly with individuals through a mix of public and private funding.

This complex web of transactions is combined with a narrow judicial interpretation of the meaning of ‘public authority’ under the Human Rights Act. This combination has created a confused picture concerning the duties and obligations of the various groups involved in respecting, protecting and promoting human rights.

Further, an increasing number of care transactions are likely to take place at the margins of, or even outside of, regulated care. There is the possibility that these transactions are beyond the present human rights obligations of the State.

We are also seeing the emergence of new on-line care marketing and brokerage services aimed at people purchasing social care with either ‘individual budgets’ or private funds. These marketing and brokering services are currently completely outside of the regulatory system with no means of monitoring the quality of the advice and services they offer. The Government wants to accelerate the pace of reform even further. While personalised care and support has many potential benefits, this is uncharted territory. There are concerns that human rights protection (and other issues) could fall between the gaps.

I’m going to come back, I’m afraid, to my perennial bugbear of people who lack capacity to make choices regarding care provisions and care delivery and wonder again how this group of people without family members, friends or advocates will be able to secure their own well-being in a world where responsibility of the state and the public authority is being discharged to private individuals. Will it become the responsibility of an advocacy service to determine that the support package and the provider of the support package are of a good quality? Or the carer/family member? Hardly the same as a protection under the Human Rights Act.

Food for thought and while I am extremely happy with the forward march of personal budgets and direct payments to those who are able and happy to manage their own budgets, the way that local authority managed budgets provide ‘more of the same’ regarding cheaply bought, block contracted social care remains floating fairly close to the edge regarding what is acceptable and what isn’t.

My fear is that the roll-out of personal budgets has not led to choice for all. It is a false choice and a false impression of the so-called ‘success’ of the roll-out. It has led to great benefits and more choice for some, yes, but I worry that this is actually at the expense of those without the louder voices to shout who have, again, been pushed to the bottom of the pile when quality services are being distributed.

So back to the reports findings so far.

Back to the BBC report

The Commission describes cases of people being left in bed for 17 hours, or more, between care visits and a failure to wash people regularly.

It received reports of people being left in filthy nightwear and bedding after a homecare visit, or without a wash or hair wash for several weeks.

Visits are sometimes so brief, the report says, that people have to choose between having a cooked meal or a wash.

The short visits also mean that staff have to rush tasks like washing and dressing, which frustrates elderly people and care staff

That doesn’t even bat an eyelid with me. This is what I have dealt with for the years I have been working in adult social care. Complaints and apologies about the time we can allocate for specific tasks due to budgets. Apologies on behalf of private agencies who have block contracts that cannot assure any kind of continuity of care.  That’s not even mentioning the  missed visits, the non-payment to staff of travel costs so they are cutting short visits in order to make it to the next ones. This is the reality of social care for older adults in the UK. Not the ‘season tickets to football matches’, not the ‘let me choose nice Mrs Walters’ daughter who I know from church to be my home carer’ kind of idyll that we are presented in the personalisation literature.

The reality for the people I work with and for is increasingly rushed visits and yes, choosing between a cooked meal (but only if it is a microwave meal because there is never ever time to cook a meal more complicated than tinned soup or beans on toast from ‘scratch’) and a shower.

The way to solve this problem and promote dignity is to increase and not reduce budgets for social care in the home. But budgets are being cut and cut hard.

Local authorities use block contacts with private care agencies to save money. The private care agencies generally pay staff at minimum wage. There are some fantastic carers and some fantastic agencies but they are penalised if they don’t offer their services at the very very lowest cost.

As for personal budgets? It is a wonderful reality for some but for most of the people I work with and for, it is a pipe-dream for people with a different kind of disability and with different kinds of support needs from the ones which are mostly promoted in our training programmes and in our policy documents.

If the government truly and genuinely means what it says about increasing and drawing out the personalisation agenda and increasing personal budgets delivered by direct payments there have to be ways clear and research undertaken to help us to create protective and interactive systems for people who are not at the forefront of the march because they don’t realise how much they are being penalised for not having a family member who is able to help with choosing and designing a care package and because they are not able to do this for themselves.

There has to be money spent on developing ways to allow those who at the moment are most at risk of vulnerability to be protected and cared for.

There are so many problems with a society that treats older adults or, in fact, anyone in the way that older people who are in need of care are treated currently. No-one wants to address it because no-one wants to pay. And it will cost.

No-one wants to lose their homes. No-one wants to lose their savings. No-one wants to pay higher taxes. No-one wants to lose weekly bin collections. No-one wants to pay insurance premiums.

The people who hold the reins of power will never be subjected to the humiliations which become a part of daily life for older adults who have need of support that is provided because they’ll be able to buy in their own ‘help’ privately.

Older people in need of assistance are less noisy than younger adults and less emotive than children in poverty and need. Ultimately we shouldn’t ration compassion and there’s no need for a choice to need to be made between one group or another

In the roll out of direct payments and then personalisation and personal budgets, it is the more able younger adults who have led the march and those who have been setting the policy and agenda seem to have completely forgotten the group of older people who don’t have involved family members and who  might not have the capacity to take decisions about care needs for themselves in the rush towards pushing the responsibility for support planning and choice of care routines. They  have forgotten amid the wonderful stories of attending football matches instead of day centres that some peoples’ reality is more about choosing a microwave meal or a shower.

Until those issues are addressed and the protection of the most potentially vulnerable groups of people is managed, the new system will not be equitable and it will not be fair. But perhaps that suits this government that wants shift responsibility from the state to the individual – which is fine to an extent but there are some people who really need that protection.

I look forward to the final report of the EHRC in December.

Undercover Care : The abuse exposed – A Review of Panorama

I sat down to watch Panorama yesterday and the trailers and name of the programme were something of a giveaway so I wasn’t exactly unprepared for what was shown.

Panorama had been alerted to abuse within Winterbourne View near Bristol, which is a private hospital run by a company called Castlebeck for people with learning disabilities and autism and according to the description on their own website

..  is a purpose designed acute service, offering assessment and intervention and support for people with learning disabilities, complex needs and challenging behaviour.

It can also provide a service for those liable to be detained under the Mental Health Act 1983. It offers a stable, structured and therapeutic environment and the support of caring and dedicated staff.

Winterbourne View, which has 24 bedrooms, offers the chance for people to progress to more community-based living as part of their ongoing rehabilitation, at their own pace.

Winterbourne View charges an average of £3,500 per week for a place. I wonder how much is spent on staff costs and training.

Acting on the information from a former senior nurse there who had been whistleblowing, Panorama sent in an undercover support worker (journalist) and some hidden cameras. I knew I was prepared. I knew we were going to see abuse but nothing prepared me for the actual footage that I saw.

I try not to engage in hyperbole but what we saw was purely and simply torture of adults who have needs which make them more vulnerable.  Physical restraint was used as a punishment and some members of staff were deliberating provoking residents almost as if it were a sport and they were playing at bear baiting. It made for uncomfortable and emotional viewing.

I worked for many years in homes for adults with learning disabilities before I qualified as a support worker and the lack of humanity with with the residents in the hospital were treated was almost physically painful to watch. The programme showed a woman being given showers fully clothed and being dowsed with water outdoors on a cold, March day until she was shivering profusely. They showed her being pinned under a chair.

In one of the most troubling pieces of footage, a girl is shown as she had tried to jump out of the window and the staff mock her attempted suicide and taunt her to ‘try again’ and ‘make a better job of it’ saying things like ‘do you want me to open the window more’ and mockingly telling her she would make a ‘splat noise’. Even writing it out is difficult.

There were other things – comments made, pin downs and the use of martial arts techniques which are, unsurprisingly, wholly inappropriate and this footage was shown to a specialist psychologist with the Tizard Centre who would respond with the same gut horror that you didn’t need to be a psychologist to understand.

The footage really spoke for itself and I wondered about the position of the undercover journalist who stood by and watched some of the abuse occurring. There is an issue of ‘greater good’ versus ‘personal responsibility’ so the argument would be that the programme itself was able to prevent future harm coming to the residents by being transmitted but he admits that it was difficult for him.   He says here

I was watching on the sidelines, resisting putting a stop to this (abuse) and blowing my cover. Simone was staring at me as she lay on the floor, staring at the only person not abusing her.

I could not save Simone on that day. I had to resist my instinct to step in. I was there to gather the evidence that could help save others from a similar fate – and Simone herself from future abuse

Some of the more difficult responses came later in the programme as the CEO of Castlebeck was interviewed and of course expressed disgust and surprise at the levels of abuse in Winterbourne View. A company statement is published here and alongside all the usual guff is an acknowledgement that the whistleblowing policy was not adhered to when an initial complaint was made by a staff nurse on 11 October 2010. The footage was filmed between February and March 2011.

I was more furious by the response of the CQC. The whistleblower also contacted them, you see with the allegations of abuse. He contacted them three times.

Winterbourne View had last been inspected ‘two years ago’. Is that the kind of satisfactory inspection regime that we have, Mr Burstow? Oh, wait, it’s ok, because the statement from the CQC says Burstow has authorised a sample of 150 hospitals receive random unannounced inspections. Woah. Only 150? Only a random sample? Why just hospitals for people with learning disabilities? If random unannounced inspections are seen as necessary to prevent institutional abuse on such a wide scale, surely they should be the NORM for everyone who receives a service via a service inspected by the CQC.

No, you see, Burstow (and the Labour ministers before him) seem to think that self-regulation is the way to go. The way the man from the CQC squirmed as he insisted that the paperwork had been in order at Winterbourne View tells a tale all of its own.

And as for the staff, four have been arrested to be charged under s44 of the Mental Capacity Act which makes it an offence to ill-treat or wilfully neglect a person who lacks capacity.

It also begs the question – where were the Deprivation of Liberty Safeguards? Were any of the residents detained under DoLs  – or the Mental Health Act for that matter (as the hospital was assigned as such to accept people detained) and if that was the case, shouldn’t there be additional checks. Would independent advocates provide a further check?

There are a lot of questions that remain and the main one is the way that institutional abuse can fester in a residential care setting. There are wonderful care homes and hospitals around. I see them and I worked in them and often the ethos trickles down from top to bottom. Staff who see other staff abuse residents can ‘join in’ to be accepted – it is a classic position of bullying and unfortunately sometimes people who enjoy this kind of power play are attracted to work in social care. There needs to be an environment that does not accept this and that stamps down on it immediately and that was the real failing of Castleview.

This was not about 4 rogue members of staff. This was about an environment that allowed them to abuse and for that the senior management up to the Chief Executive should be responsible. Where is the support and training for staff who have to work in stressful environments? Where was the supervision that would have stamped out some of the abuse.  That doesn’t excuse those who were responsible for mistreatment  but it draws interesting parallels with the sacking of Shoesmith.  Wouldn’t we be baying for the blood of the CEO of Castleview? Or perhaps because the abuse took place in a private setting there are different lines of responsibility.

I think we should look long and hard about how we, as a society, seek to push people on the peripheries of society, because of age, disability or capacity to the margins of society and people to provide care who are not regulated and not supervised.

When the regulator fails so substantially as to ignore someone who whistleblows explicitly, do we not see a problem the ‘system’ that is increasingly reliant on proactive ‘complaints’ to trigger assessments?

There is much to do and much that needs to be changed.

I wouldn’t say I enjoyed the programme, it upset me and it angered me but I think everyone involved in the sector should watch it.

It can be viewed here on the BBC iPlayer.

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