Overshadowed

A couple of years ago I did some work around inequalities in healthcare; the fact that people with mental health problems or learning disabilities tend to get significantly poorer access to and outcomes from health services. This was a reaction both to the many examples I’d come across through working with advocacy organisations and the BMA report that showed that diagnostic overshadowing (i.e.  ascribing physical health complaints to issues relating to mental health or disability) contributes to a shortening of life expectancy of between 10 – 15 years.

Sometimes these issues are framed in terms of a shortfall in the person; that the person can’t speak up or articulate their problems well. Or that there is an intrinsic interlinking of mental health and physical health pathology. I’d like to offer an alternative narrative, but to do so I have to give some additional context.

There was a time when I was able to keep personal and professional stuff completely separate. Some of you will know that this kind of ended when I was open about my experiences with depression. In one post I talked of trying to view my depression as a state from which I was recovering rather than a one-off incident like a car crash. The comparison wasn’t arbitrary. I’d recently been in car accident and was sure that the road to recovery would be swift. Now, almost two years later, I am still dealing with spinal pain. Though I am a fan of irony it is little compensation for the pain and the impact that has on my life.

So what does this have to do with anything? Well, a little while ago after the physio had said I had a clear and consistent problem relating to a couple of my vertebrae I was sent for an MRI scan. When I phoned my GP surgery to find out the outcome, the doctor that I spoke to said that the results were unclear as the image not good enough for diagnosis. No problem there, such things happen. The next thing they said surprised me, though it really shouldn’t have. In short it was along these lines (paraphrased for brevity) :

GP:         I see from your notes that there are references to depression. Are you sure that the pain isn’t just an expression of that?

Me:        I’m pretty sure. I think it’s more to do with being in a stationary car that was hit from behind by a car going over 30 mph. The pain started about an hour after the incident. It hasn’t changed for 2 years. I’m pretty sure that’s the more likely cause.

GP:         But you might not know how depression can affect the way you perceive pain. Are you sure it’s not about that?

Me:        No, I’m pretty sure it was the car accident. I know a bit about depression, this isn’t part of it. By the way, how did you jump from “the image isn’t clear enough for diagnosis” to “are you sure it’s not in your head?”

GP:         Erm…

There’s a wonderful idea in logic called Ockham’s (or Occam’s) razor. It basically means that  if there are a competing ways of explaining something, you should choose the explanation that relies on the fewest assumptions. The GP assumed that it was more likely that I would experience back pain as an expression of depression. I assumed that it was more likely to be down to being rear ended by a car.

The GP assumed that an unclear MRI scan was down to my depression. (No, I don’t get it either). I assume it’s more likely to be down to having to lie on my back for a scan on an injury that is exacerbated by any pressure being put on my back. I would say that I’d leave it to you decide which was the more likely explanation, but we’d both know I was lying.

I was able to talk this through with the GP, we got to a reasonable endpoint. But I absolutely felt as if a health problem with a definably physical cause (it even had a registration plate for goodness sake) was being put down to my past mental health. It takes a pretty big assumption to overshadow a car.

So I’m offering this up as an example. Whether we call it diagnostic overshadowing or the credibility gap, the problem can’t be located solely in the person who is disadvantaged in healthcare. It’s not just about being able to speak up; I can do that. It’s not about a lack of articulacy; I hope I’ve shown I can manage to string a few words together. It’s not even about mysterious causes. Cars have not been mysterious since the early 1900s. The problem is caused by the fact that, regardless of how  much it strains Ockham’s razor, too many people think that mental health problems somehow preclude physical ill health.

12,000 people - is that much of a problem?

This is the first in a series linked posts about thousands of people being denied their rights to an Independent Mental Health Advocate (IMHA). This isn’t merely some technicality in the implementation of a health system. 

Ask yourself this question, if you were detained against your will, or treated without your consent, would you want to know what was going on? As you try to find out why you're there - scared and confused, would you want to know what your rights were? Would you want to have someone there that to make sure you were treated with respect; that you were listened to? That is what an IMHA is there for. That's what thousands of people are being denied.

The lack of access to IMHA is a matter of systemic and ongoing breaches of mental health law relating to Independent Mental Health Advocacy.  Upcoming posts will address how the problem could be resolved and some wider underlying issues. This post looks at how big the problem is and why it matters.

Around this time last year I wrote a piece for the Guardian Social Care Network about thousands of people being deniedtheir rights. People subject to compulsory powers of the Mental Health Act, whether in hospital or on a community treatment order, have a right to an independent mental health advocate (IMHA) to help them know their rights and to ensure they have a voice in decisions about their care and treatment.  The Care Quality Commission’s report on the MentalHealth Act (2010/11)   showed that for many people this was not the case.

In January this year, the CQC released their report on theMental Health Act 2011/12. I was hoping to see some changes as a result of the previous report, and indeed there were some. For example, the report showed that people were more likely to be informed of their legal right to see an IMHA.  There was also a rise in the number of wards on which an available IMHA service was found and the attendance of an IMHA when one was requested.

Mental Health Act Report Area	2010/11	2011/12
Is there evidence of an IMHA service?	85%	89%
Do patients have regular access to an IMHA?	65%	74%
Does the IMHA come when requested?	86%	88%

(Taken from figure 11 of CQC report)

However, as these areas are meant to be guaranteed by the Mental Health Act, these figures should be close to 100% . The CQC report shows that their reality is still far from guaranteed. That means that the table could be presented like this:

	2010/11	2011/12
No evidence of an IMHA service	15%	11%
No regular access to an IMHA	35%	26%
People who requested an IMHA who didn’t get one	14%	12%

Percentages can be a bit dry, so let’s put some real numbers to that. The CQC report states that there are approximately 61,000 people detained in a hospital setting at any one time. This means that last year 6,710 people were detained somewhere that there was no evidence of a safeguard to which they are legally entitled. Last year 15,860 people were detained but had no regular access to someone who could help them know their rights and speak up alongside them. And even where people requested an IMHA, 7, 320 didn’t get to see someone. One in eight people that had requested access to a service to which they are legally entitled never received it. One in eight.

Whatever way you slice it, somewhere between 7,000 and 15,000 people in hospital last year were denied something promised to them in law. Given that the report also showed minimal awareness of IMHA amongst the 5,000 people Community Treatment Orders, the figure would rise above 12,000.

12,000 people can be a bit hard to visualise, so here’s some ways to think about it.

• It’s more than the entire English based staff of the Care Quality Commission, Department of Health, Department of Communities and Local Government, Crown Prosecution Service and the UK Space Agency (although, to be honest, there are only 40 of the latter.)

Prefer a sporting example?

• When Andy Murray walks onto Number One Court at Wimbledon today he will be playing in front of a capacity crowd of 11,430. Or put another way, it’s more than the entire crowd that watched Burnely vs Crystal Palace in January 2013 (11,564).

If you prefer culture to sport...

• Get the massed audiences of packed houses at Royal Albert Hall, Hammersmith Apollo and Royal Opera House combined – that’s about it.

Now imagine the news report that says that an entire football stadium is denied its rights, that all those at Number One court today will be failed by a system, that the staff of those government departments will be failed by service commissioning, delivery and regulation. That this state of affairs will be known but not acted on. That this will go on for years.

I dare you to walk onto the pitch at Turf Moor and tell the crowd that you're going to do that to them. I wonder if the staff of those government departments and agencies would feel it a mere problem of implementation if it were happening to them. Well, it is happening right now to people who have been diagnosed with mental health problems. It's been set out in black and white in numerous reports, yet it doesn't seem to create much alarm. Is it the stigma of mental health that prevents us from being up in arms about it?  I don't know, but it needs to change.

Next time, I'll give some practical examples of what I think what needs to change and how we can make them  happen. For now I ask that you accept that this is a major problem.