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. 

When more isn't better

Over the last couple of days at Action for Advocacy’s conference we’ve been helping the advocacy sector to think through some difficult choices for the future. Not just asking “what is advocacy?” but trying to figure out what advocacy needs to be in the future. We’re still working on it.

I’m proud to be part of the independent advocacy sector, but I believe that we must challenge the idea that more advocacy is an inherently good thing. More control for people over their own lives is a good thing. Better ability to speak up is a good thing. People shaped services and dignity in care, all good things which advocacy helps to bring about. Advocacy is merely the tool for achieving these, and independent advocacy is only part (albeit a very important part) of what advocacy is.

In my presentation I asked the question, “Who is my advocate?” We need to move beyond advocacy being only about the independent advocacy role, otherwise we exclude natural advocates (e.g. friends, family and carers) undermine self advocacy, and subvert the need for nurses, social workers and all health and care staff to  speak up for the person in their care. Yes, there are times when independent advocacy is needed but we must be clear that the responsibility is on health and care professionals to listen, to include, to build person centred services, to put the person at the centre of decisions about their life, to ensure that all are treated with dignity and respect.

The provision of independent advocacy must be seen as a supplement, not a replacement, to this duty of care. We need to do more as a sector to work inclusively, supporting people to speak up about their own lives and ensuring carers (paid or unpaid) have the tools and support to enable this to happen. We need to look at how we respond with true meaning to our diverse communities. We must find ways of supporting groups that have an advocacy role within their wider purpose. We need to work together, develop skills create contacts for us all to make rights a tangible reality for all. I’m determined to explore how we can play a role in making this happen.

And despite a climate for increasingly tightly case managed services, when independent advocacy is used it must aim to truly give people more control over their own life. Advocacy services should seek to create change at a system level by being willing and able to robustly challenge poor practice and using data from advocacy work to build a case for wider change. Without this, advocacy runs the risk of being complicit in accepting poor treatment, abuse and denial of rights. We would be saying that we now accept that services will fail people, and that we’re fine with that. We’re not.

We’ve achieved much in the past 10 years but we have a long way to go. Advocacy is a sector that should not celebrate a growth in demand. In the long term we don’t want more independent advocacy; we want better services, tangible rights, fulfilled lives and a strong and equal voice for all. In the meantime, we need to prove to ourselves, our service users, our commissioners and our communities that advocacy is really making a real difference, that it is narrowing the glaring gap between how people should be treated and how they are.