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.

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”.

How much to empowerment?

You’ll never guess what I learned in the back of this cab yesterday... 

I’ve been spending a lot of time thinking about commissioning recently. Having heard so many stories of bad commissioning (poorly thought through tenders, slashed budgets, no demand analysis, ineffective monitoring, prioritisation of price over quality...) the subject consumes much of my thinking.  And then suddenly, sitting in a taxi at the end of a long train journey, I realised that a good model was staring me in the face. There, on a laminated yellow card, was a table saying what I'd pay for getting in, mileage, luggage, cleaning costs etc.

It struck me that this set of charges effectively took price out of the equation of competition in the local taxi market. Freed from this consideration, other factors come into play; how quickly the cab will appear,  how reliable the service is, the courtesy of the operator, ease of ordering.....The choice is made on quality because I already know what I’ll be spending.

I have nothing against competition, in fact I quite like it. But there are some fields where competition on price is useless, and independent advocacy is among them. So I’ve been trying to identify relevant examples of other forms of competition and this table of tariffs gave me one.

I would argue that price driven commissioning in advocacy creates an incentive to provide poor quality. In independent advocacy, too many commissioning decisions appear to have been made on price. If current trends continue, the “advocacy” that is being commissioned is at risk of becoming a purely mechanical response to an identified need; neither seeking to change the system or empower the individual. That is not advocacy. Commissioning such services as advocacy, or pressuring advocacy services towards such a model, leads to a waste of public funds and denies people the support they need to have control over their own life. 

Price driven competition is at risk of defeating its own objective. It takes longer to be creative, create change, release someone’s potential or challenge systematic poor practice than it does to tick a box. Using price only comparisons in advocacy commissioning is like judging Masterchef on who can get their weekly shop at Lidl for the least money (in case of a draw, winner decided on speed). 

So why aren’t we looking for that tariff of fares? Why aren’t we saying, “This is the need in the area, these are the resources that are available. Show us what you can do with that. What difference will you make?” 

That would create competition based on excellence, make monitoring simpler and more relevant, make local commissioners accountable.... and make it more likely that people have a strong and equal voice. That's a destination it's worth paying to reach.