Getting From A to B

The Distance From Should To is…. It’s an idea that fascinated me for a long time. Usually it's a way of comparing policy, theory and announcements to reality. This time it’s about me.

It’s been a while since my last post, and some might think that this gap is a little curious given the recent select committee report on the Draft Social Care Bill. I’ll write about the draft bill shortly but first I’ll talk about the gap.

I’ve just returned  to work following sick leave. Late last year I reluctantly accepted that:

a)   I was suffering from depression

b)   It was stopping me working properly

It took me a long time to get from a to b.

I don’t intend to speculate on the reasons for depression or to spell out the effects. There are other bloggers out there that can do that far better than I. But other people’s openness about their own mental health issues is something I’ve always admired. It was really useful to me when I was finding my own way through. It seems only fair to add my own small contribution.

I also want to publicly acknowledge that there was a problem, particularly for anyone who may have been wondering why I’ve been so bad at communicating with them recently. It wasn’t you, it was me….

...so, back to me.

I should have taken time off earlier. One of the things that stopped me was the belief that I would be able to turn things round. Even when I accepted that I had depression I didn’t accept that it meant that I would be affected by it. Other people? Yes. Me? No.  

I should have been able to sort things out. I was able to seem ok to most people, surely that meant I was almost ok. I was convinced of this, so I piled more and more pressure on myself.

I always felt that I just needed to sort out one more thing. I’d take some time off in a bit, but not just now. The problem was that I was dealing with what should be, not with what was really happening. As a result I worked longer hours, achieved less, and got worse.

If I had broken my leg I wouldn’t have expected myself to keep running. However, despite a lifetime working in and around mental health, I couldn’t accept that depression would reduce my ability to get things done, so I kept going. In retrospect, this was a special kind of idiocy.  It was harder to sort things out, many things didn’t get sorted. I got worse.

Recently I’ve been asking myself why I was so reluctant to accept the impact of my depression. I've came to the uncomfortable realisation that despite many years trying to reduce the stigma and prejudice that people with mental health problems face, despite being a fan of the Time To Change campaign and the Black Dog Tribe, when it came to me I was somehow ashamed. Other people would be affected by mental health problems. Somehow I thought that shouldn’t apply to me.

Well, it did apply to me.

Taking time off was one of the scariest things I’ve ever done. It was probably one of the best things I’ve ever done. As the eagle eyed amongst you may have noticed from my profile, although I’ve returned to Action for Advocacy, I’m not coming back as Chief Executive. I need to make sure I’m able to put some things into that wonderful pile marked “someone else’s problem”, but believe me, I have enough to get my teeth into.  So let me finish by saying a few things both you and I should already know.

Depression is as real as physical illnesses. It has as great an impact as physical illnesses or injuries. I expect that our society should treat mental and physical health problems with a parity of respect and understanding. Mental health problems no more define a person than does a fractured rib. I have spent years of my life challenging fears, assumptions and prejudice about mental health. It’s strange to realise that one of the most ingrained problems was sitting in my own head.

How soon is soon?

What can we learn from Jeremy Hunt’s speech today? There is so much to say on health, so much to say on social care, so many challenges ahead. And lurking in the background, Dilnot.

Mr. Hunt's statement about naming the guilty in care scandals, mid-Staffs, Winterboune View etc were striking - as was  his statement that quality of care was as important as good financial management. Of course,  given that most enquiries into abuse in care situations recommend that independent advocacy is an important safeguard against such abuse, it would have been nice to have had a mention, but that's another story. 

It would also have been good to hear about cultures of care, commissioning practices, out of sight placements, eligibility thresholds, mental health. And discussion  about social care seemed to focus almost exclusively on older people, something which ignores a large number of people who need or benefit from social care. And what about Dilnot?

I was surprised to hear Hunt state that the conservatives want to implement Dilnot “as soon as we are able” – it seems to give a sense of urgency. However it also leaves the door open to excuses, to barriers and to more delay. We need to move from "as soon as we are able" to "we are able to do it soon". 

The challenge now must be for the government to find ways to be able to do this soon. It must urgently manage away potential obstacles to implementation. It must also  to find ways to resource a social care that keeps the dignity of the individual central.

The Credibility Gap - A Pitfall in Social Care

Why do some people find it so hard to be heard, to get the services they want or to be respected to make their own choices? It’s a question I’ve been discussing a lot recently as the Care and Support Alliance  try to ensure that the social care bill will give sufficient support to people to have true control over how their social care needs are met. 

So what gets in the way of voice, choice and control? Too often the view is  that the cause lies in the person – in their disability or the barriers that they have communicating. If that were true, this view would make assessment of who is eligible for advocacy simple; you could measure against a checklist. But phrasing it overlooks three really important facts.

First, not every disabled person needs or wants an advocate. Not everybody with learning disabilities, not everyone with a mental health problem, not every person with autism, not everyone in any group. To suggest that they do is to massively undermine the ability of people to speak for themselves.

Second, it suggests that the problem lies in the person, not the system.  I know of many people who have used advocacy who in almost any other situation are remarkable communicators. However, when they are trying to deal with systems, and saying the wrong thing can have long term consequences, communication gets tougher. 

Professionals can be hard to contact, are sometimes pressed for time, refer to knowledge you don’t have, use their own language, control access to services and don't always respond well to criticism. It is unsurprising therefore that people are reluctant to speak up and find it hard to be heard. Information and advice might help reduce this problem for some, but for many that is not enough.

But it is often a third factor that forms the biggest barrier; when the preconceived ideas that people have about you stop you being heard or having control over your life and your choices. This is something which I call the credibility gap, and it is expressed in many ways.

The credibility gap is what makes it harder for people with mental health problems to get access to good general healthcare – too often symptoms of physical problems are ascribed to psychological factors. It’s one factor in the under-identification of depression in older people. It’s what makes people with learning disabilities have the validity of their requests and statements challenged, as if they couldn’t possibly understand what they’re saying. It’s the barrier to justice when people in residential report abuse by staff to the police – because we know all care staff are nice and people in care can’t be believed, yes? These perceptions have been shown to be false countless times, yet they persist and compromise the dignity and rights of too many people in our society.

Put simply, the credibility gap is what you experience when someone has made up their mind about you before you’ve even spoken. It’s an expression of all forms of prejudice that allows people in power to undermine or ignore those who need something from them. And the credibility gap is not solely related to disability or age, it’s something that carers experience too.

The dreadful experience of Mark Neary shows this all too clearly. A devoted father and carer to his adult son, Mark faced the prejudice of care staff who decided that his relationship with his son was a problem. Every action he then made, all communications he had with care staff were viewed through this distorted lens. For over a year, Mark’s son was kept in residential care rather than being at home with his father. For Mark, this credibility gap was an impassable chasm despite his energy, perseverance and his eminent ability to communicate well (read his blog – it’s great). One turning point came when an independent advocate was involved who managed to challenge staff perceptions. Eventually the case went to court. Mark won and his son returned home, but the cost to all involved was considerable. That is not how social care should be.

As it stands, the draft social care bill ignores the effect of the credibility gap. Information and advice do not close the credibility gap. Independent advocacy can. (You might want to click on that link and suggest that there should be a general duty to ensure there is information, advice and independent advocacy.)

Even outside the context of the bill, without facing this injustice which so many people face we won’t get the balance of advocacy provision right. But far worse than that, we will be supporting the idea that the problem in communication is a deficit of the individual. It’s not. Rather, it’s a challenge for individuals, professionals, services and the state to address together; communicating openly, fairly and without prejudice to ensure we all have choice, dignity and control in our own life. 

Questions, questions, questions

I still can't quite believe how many questions I've been asked about advocacy this week. I found out that it’s actually quite refreshing to be asked questions who don’t know anything about advocacy; it makes you have to re-examine your language, your answers and your assumptions.

Fortunately, most of the questions were easy to answer, I could even direct people to websites, codes of practice and legislation. But with some questions it struck me that  the answer is more nuanced, more dependent on other people or services than some might expect. It became easier  to see how some things are unclear to people.

I’ve been asked every question bar one in the list below, and many others besides. I think we in the advocacy sector might need to ask ourselves some of these questions again to make sure the answers are as clear as possible. And if there’s ambiguity we need to either know that it’s like that for a very good reason or we need to identify what needs to change.

Those questions.....

Who is an advocate? What is an advocate? What’s the difference between an advocate, a supporter and a friend. Can nurses be advocates? What is a legal advocate? Can I call myself an advocate? What is a mental health advocate? Do you need to be attached to an organisation to be able to advocate? 

Do advocates have any special status in law? Could I just call myself a mental health advocate? What’s the difference between a mental health advocate, someone who calls themselves a mental health advocate and an independent mental health advocate? What is a self advocate? What is a peer advocate? Can you be a volunteer advocate? Who regulates advocates? When you say self advocacy, don’t you just mean talking? What training do advocates have? Do advocates have a special badge, or card or something? 

Can you strike off an advocate who is found guilty of wrongdoing? If I call myself an advocate do I get treated differently? How do find out what kind of advocate someone is? What rights do advocates have? Can you stop someone who isn’t an advocate calling themselves an advocate?  If someone was trained as an advocate, but isn’t working for an advocacy organisation in relation to this person, can they still call themselves an advocate? If an advocate falls in the woods but there’s no-one there to hear them, will they still challenge the fairness of the process? 

Can advocates just walk into hospitals? What do advocates keep confidential? Do advocates have legal privilege? Whose responsibility is to check the status of an advocate? Who pays for advocacy? What does independent mean in advocacy? Who came up with the word advocacy?

A few simple questions?

In the past few days I've been asked more questions about advocacy than you would believe. Actually, I've been asked only a few questions, but they've been asked lots and lots of times...

What is an advocate?

Do advocates have special legal privileges?

What is a mental health advocate?

What is an Independent Mental Health Advocate.

..and most of these easy enough to deal with  (see Action for Advocacy latest news for some answers).

But the problematic one is explaining that while, yes, there is a well understood role of a mental health advocate (supported by and accountable to an advocacy organisation), it's also possible to describe yourself as a mental health advocate if you are not operating in this way.

This poses a problem for the advocacy sector and places a responsibility on the health and social care sectors. For advocacy: is there a way for us to make it easier for others to know what role and status someone has? For care providers: what steps are you taking to ensure you are clear about advocacy; its role, its boundaries and people's right to access advocacy.

I've worked for almost a decade (the last 6 years with Action for Advocacy) to try to clarify some of these issues. We've created the Advocacy Charter, A Code of Practice for Advocates, high quality training, the Quality Performance Mark and lots of information to help address this issue. We may think people should know about advocacy.

There's a reason this blog is called the distance from should to is, and it looks like we've still got a long way to go when it comes to developing a general understanding of advocacy. But that work is essential if we're going to ensure those who are striving to be heard and to have control over their lives are going to gain access to safe, effective and high quality advocacy. And that's a journey worth making.

Stop, watch! Olympics, Elitism and Winterbourne View

A stopwatch is a useful thing. It can show us in fine detail what matters. Tonight, amidst Olympic glory, it showed us something has gone very wrong.

At 11:00 am today, the serious case review into the appalling abuse at Winterbourne View was released. Earlier , Mencap and the Challenging Behaviour Foundation launched their report, “Out of Sight” which flagged up that Winterbourne View was one part of a potentially huge problem. These reports aren’t just important if you are in residential care services. If you will be in residential care in the future, or know someone who might be, or work in social care, or just give a damn about dignity, rights and respect, this is a story for you.

So where does the stopwatch come in? Well, I’m not so naïve as to think that a landmark low in our treatment of marginalised people will outstrip the achievements of Olympians. And no, I’m not being sniffy about sport, I love sport, always have. I might think that the ongoing abuse of numerous people in our society is more important, but that’s my call.

But the stopwatch comes in when you see how the story was cut, particularly how it set out to learn the lessons from Winterbourne and listen to someone who had the courage to blow the whistle on what was happening.  Terry Bryan took this risk because he cared about what care is meant to be, and he did it again and again. It might have been worth listening to him.  BBC news at 10 gave him 2 seconds. OK, I didn’t have a stopwatch but it wasn’t any longer than that. That can’t be right can it? And how much time did it give to the reports the police ignored, the admissions to A&E that the local hospital didn’t spot a pattern in? None for the first, little for the second. That doesn't seem like reporting that changes things, there's no learning, no depth. It looks more like shock and run. 

Tonight, Newsnight is talking about elitism in sport. The serious case review isn't mentioned. So let's  look at the wider problem of elitism. It seems that if you have care needs of any kind you’re going to be way down the pecking order.  Shunted out of area, placed where choice is removed from you, at greater risk of abuse. As a society we turn our attention away, and the media is complicit in this.

We who are more able to get things talked about need to keep social care, disability, work capability assessments, abuse and that whole bunch of forbidden topics on the agenda. Look at the coverage, get your stop watches out, and if the balance seems wrong, speak up.

All Rock, No Blackpool?

I’ve been thinking a lot about the Care and Support bill and the fact that it defines advocacy as a social care service for which there may be a need. Identifying needs is important.

Many years ago I did some research about needs evaluation in care planning. It turned out that there was a big difference between what was written in care plans and what was understood and known by ward staff. In general, staff were aware of and acted on a range of information that was rich, complex and arose from an ongoing relationship with the people on the unit. The care plan on the other hand was a bare essentials plan of must do actions. It often missed out some of the most important facts about a person’s needs and abilities because it was assumed that “everyone knows that”. The problem was that when the use of agency staff increased, not everybody did know that.  Lesson; sometimes we assume and imply too much when we really need to spell it out.

On that note, a recent meeting relating to the draft social care bill and white paper is worth exploring. The Department of Health’s interim report on Winterbourne View explicitly stated that the care white paper would explore the role of information, advice and advocacy. In that regard (and many others) it was surprising to see that so little actually appeared in the white paper about advocacy. However, it appears from the meeting at DH  that advocacy is implied within the need for information and advice within the bill. We can argue that it needs to be further developed, that the advocacy “bit” needs to be clarified as somewhat different to the information and advice roles, but we were told that advocacy hadn’t been entirely forgotten. The lessons from Winterbourne are too important for that.

In fact, looking through the principles of the white paper and the aim of the bill, it is hard to imagine the step change in services being delivered without advocacy. You could say that advocacy runs through the white paper like the words in a stick of rock, but I’m concerned that it doesn’t stand out clearly enough. If you haven't been told it's there, if you aren't plugged into the need for advocacy, then you won't notice the word advocacy.

And that means that at the moment with have a stick of rock with no “Blackpool” in it. If the need for advocacy isn’t explicitly spelled out it may get missed when guidance goes from national to local level, something which would reduce the chance of ensuring dignity, choice and control for all. We need the writing to be clearer. If you think so too, please get involved in the consultation on the Care and Support Bill website   – or sign up to Action for Advocacy’s 100 Words on Advocacy.