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. 

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.

Caring For Our Future by Forgetting Advocacy?

I’ve just taken a quick look at  “Caring for our future: reforming care and support” and it seems to signal an end to the phrase “information, advice and advocacy”. Information? Yes. Advice? Yes? Advocacy?.....

Well in terms of advocacy there seems to be some misunderstanding, some rewinding of the clock, a whole lot of forgetting and a potentially risky future. Here’s the sum total of the report’s mention of advocacy.

“Advocacy services have been in place for more than 30 years, often providing support for people who lack mental capacity and who have no-one to act on their behalf. These services will continue to play a vital role in supporting people and we need to understand better the benefits of these services and how cost-effective they can be. We will therefore work with partners to develop and disseminate best practice and potential new business models”

That's it. 

Well, most advocacy is for people who have capacity. Overwhelmingly so. It’s not the lack of capacity to make a specific decision that leads people to need advocacy. Rather it’s the experience of not being listened to, not being included in decision making, being discriminated against, being abused, being in receipt of poor or inappropriate services or not being able to access services (including basic health care) at all. Those are the main triggers.  To focus on a lack of capacity risks locating the fault with the individual, not the services. 

And advocacy is not just for people who have no-one to act on their behalf. Not even the IMCA role is limited to this. Many of  carers I spoke to at the social care lobby of parliament talked about wanting an advocate for the person they looked after. And while I’m firmly behind the idea of getting a better view on the impact and effectiveness of services, I'm concerned that this single statement ignores a wealth of evidence pointing to the impact and value of advocacy. 

If that’s the case, forget all of those mentions about the importance of advocacy as a safeguard against abuse and in safeguarding processes. Forget the CQC's thematic review on learning disability services, ignore SCIE guidance on safeguarding, forget the lessons from Winterbourne view, forget the Kerr-Haslam report, forget all the other reports that make the same point. 

Ignore Valuing People, forget about the Care Quality Commission’s excellence framework. Forget about the NHS Confederation’s report Delivering Dignity. Forget the value that the Mental Capacity Act  Code of Practice puts on advocacy as a means of enabling people to be more involved in decisions about their lives (and no, that’s not a reference to IMCA). Forget EHRC's report "From safetynet to springboard". Forget the Law Commission’s report on reforming social, they were obviously having an off day when they recommended realising the right to advocacy for all disabled people. And I can only conclude that the Joint Committee on Human Rights was similarly confused when they supported the call.  Forget them both, forget them all, but remember this.

Every single time someone approaches an advocacy service, it is an indication that they believe some decisions about their life are out of their control; that something about them is being decided without them, that they are at risk or their voice is not being heard. A request for advocacy is a request for autonomy and control. It’s often a sign that the care and support system isn’t working. And, with the exception of some statutory provision, it’s a statement of belief from individual people that advocacy creates real change for them.

So when we look for the effectiveness, cost effectiveness and value of advocacy, let’s make sure we don’t choose models that ignore those problems or are incapable of offering credible solutions. And when it comes to decisions that materially impact on the lives of people who demand advocacy services, let’s live up to the statement  that the health white paper borrowed from the advocacy movement - “Nothing about me without me”.

Right answer, wrong question?

I recently got a birthday card that said “The answer is football. The question is largely irrelevant”. Someone knows me very well. When people hear organisations talk about the need for more advocacy provision they may well suspect the same kind of failing. It doesn’t matter what the question is, we’ll tell you that the answer is advocacy.

So today I spent the day with the Care in Crisis lobby of parliament and taking part in the online #twobby. I met many inspirational people, heard challenging stories from people struggling to get the right social care, met and had a good discussion with my local MP and heard Paul Burstow talk about his plans for the Social Care White Paper.  And I tried not to talk about advocacy too much, because the questions weren’t always about advocacy; they were usually about dignity, fairness, funding, appropriate services, connection to communities.  Advocacy isn’t the answer to these questions, but it is a mechanism that informs those answers.

So when we hear that people need support to navigate the new care system, that people need support speaking up, that getting appropriate care is a constant battle, that people are afraid of complaining on behalf of relatives, that closed care systems breed abuse  – well, advocacy is part of the answer. (If you don't believe me you may want to look at my previous post A Gap in Dignity and Rights.)

Paul Burstow spoke of a future where local authorities should be held to account within national frameworks of expectations. He has previously spoken of the role that advocacy plays in demonstrating that local authorities are meeting their equalities duties. Including a requirement to record the advocacy needs of a community in the Joint Strategic Needs Assessment would help local communities hold LAs to account on this; it would let us see the distance between should and is.

Then local communities would be able to check that there is at least one mechanism in place to address the real question; have we done enough to make sure that everyone's care needs will be met in a personal, appropriate and dignified way?