The Need for Care, Candour and Change

My last post talked about the poor access to healthcare for people in hospitals. No, really.  So I want to pose a simple question; what hospitals are for?

Now, I would have thought that hospitals are something to do with health. I'd expect hospitals to play a role in treating someone's health issues to make their life better. Or if you don't know what's wrong, hospitals might assess the problem. And during that process, when people are unwell,or injured, scared, and desperately hoping for things to improve, I'd expect hospitals to be a place of care. Not just because it's socially acceptable, or right, but because a lack of care creates stress - and that's not good for recovery.

So three purposes of a hospital; assessment, treatment and care.

Let's see what happens in a place called an "assessment and treatment unit". They've gone for a Ronseal approach to the name. And you'd expect care because, well we’ve all heard of the duty of care, haven’t we?

 “The right to a duty of care – health professionals must use reasonable care and skill and patients are entitled to receive care of a standard which a responsible body of medical opinion‟ considers to be appropriate to their condition.”

So assessment, treatment and care – they’ve nailed it. Surely assessment and treatment centres should be the zenith of the care experience. Only, they're not.

STATT, is an assessment and treatment unit run by Southern Health in Oxfordshire. That’s where 18 year old Connor Sparrowhawk went for care, and died.

I first heard about Connor through a blog that his mother Sara writes. There he was known as LB (short for laughing boy) or The Dude. The blog was outstanding, not only because of the beautiful writing, but because it celebrated the oddities and joys that life with Connor entailed. The blog was often one source of joy and hope in a world where both are too often lacking. The blog is still outstanding, but since Connor's death, that's for far sadder reasons.

The trust initially claimed that Connor had died of natural causes. He hadn't.

Connor had a condition called Klinefelter's syndrome, which includes learning disability and epilepsy. He died after having a seizure in the bath. He drowned. In the unit where he meant to be cared for. There was no effective plan in place to deal with his epilepsy. The awareness of his epilepsy seems sketchy. His parents flagged up indicators that he was having seizures. They were ignored.

An independent investigation began, but the trust didn’t seem to have its act together. Connor's family understandably feared a cover up. They engaged a legal team to prevent this and as a result they have run up legal costs. Despite the work of the legal team and the investigators, the trust still didn't cover itself in glory. For example, it found a bunch of documents only two days before the final report was published. Too late for any comment from Connor's family. The report was published, 84 days after the trust's own 60 day time limit for the enquiry had elapsed. Here’s a brief summary of the timeline relating to the investigation from Sara’s blog.

The trust did not appear to embrace the duty of candour - one of the key recommendations of the Francis report. It appears to have been more concerned with denying responsibility than responding humanely to Connor's parents or dealing with the problems that were so clearly apparent in their services. They've obstructed the investigation into Connor's death, marginalised his family, and tried to gag the person who was supposed to be providing support to Connor's family  in the investigation (to the point of saying that they couldn't pass on details to Connor's family and couldn't even say that they were operating under a gagging clause).

Despite this the report did finally come out, and Sara’s solicitors described the outcomes of the report as follows:

“The report, completed by the independent organisation Verita, investigated Connor’s death and found the following:
1. That Connor’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s     epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance

The report follows a highly critical CQC inspection published in December 2013 in which the STATT unit failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.”

Now stop for a second. Go back and read point 5. Sometimes things are horribly simple.
Now go back and read points 5 and 6 together. You might find yourself doing this for some time.

Just in case you think that Sara’s solicitors might be putting an overly dramatic spin on things, take a look at some of the extracts from the report itself. It can be found on Southern Health’s website .

F1 We found no evidence that an epilepsy profile was completed when CS was admitted to the unit. This was a key omission.

F2 We found no evidence that CS had a medical review on admission which should have included a review of his epilepsy.

F3 Epilepsy was not considered as part of CS’ risk assessment at or after his admission to the unit.

F4 The trust care pathway Epilepsy in people with a learning disability map (2012) had not been implemented in Oxford in 2013. This map is based on NICE guidelines which were in place at the time and should have been followed.

F5 There was no comprehensive care plan to manage CS’ epilepsy.

F6 The information in CS’ clinical notes was contradictory in relation to his epilepsy history and care.”

And here’s an excerpt from the report on what should have been expected and what actually happened

“6.8 Vicki Myson reviewed CS’ clinical notes for this investigation. She wrote in her report to us:

“There was no epilepsy profile completed for [CS] on his admission to the unit. Within the profile I would expect to have seen a history of [CS] epilepsy, a description of all seizure types experienced and a history of anti-epileptic medication. The care of [CS] was multi-disciplinary and, therefore, paramount for all staff involved being aware of seizure types so that they can be accurately observed and reported. When epilepsy was mentioned during written communications the seizure types are only named and not described.”

6.9 The records indicate that CS should have been seen by a junior doctor on admission (known as clerking in). This ensures a medical assessment on admission along with decisions about observations, medication and physical care. This would often be in conjunction with nursing admission processes. We have not seen any record of such an assessment.

6.16 We found no evidence in the clinical records to indicate that his epilepsy was explored. A number of physical and risk assessments were undertaken and updated during his stay at the unit but none that explored his epilepsy until 23 May 2013. Within CS’ notes there are no individual risk assessments about CS’ epilepsy or assessment of the risk of seizures.

Comment

Had the risk assessment been done it should have considered risks associated with activities like bathing and cooking.

6.17 S11 wrote in the health action plan on 14 April that CS had received an epilepsy risk assessment. We found no documentary evidence of this. “

So Connor died in an assessment and treatment unit that seems short on assessment, and treatment, and care. It's hard to see how the professionals there lived up to their duty of care. And the way that the investigation has been handled shows no real sign of living up to the Duty of Candour that was recommended in the Francis report.

So what now, what next? What can change?

Sara started a campaign called Justice for LB. It needs support. The truth about the system and people that allowed Connor’s death to happen must come out, and merely saying that lessons will be learned is not enough. Things must change. And simply put, someone who has lost their son should not be left holding the bill for ensuring that happens.

And it’s not just about LB, it’s for all the young Dudes. There were 5 people in the unit when Connor died. What was treatment like for the other 4? What is it like for others in assessment and treatment units in Oxfordshire, and up and down the country? What’s it like for so many people with learning disabilities, for so many people in residential care - given what we already know through the document Death by Indifference?

Good assessment, appropriate treatment, genuine care and candour when things are going wrong. We should not expect anything less from health services. No one should. Yet CQC’s report on mental healthcare show that physical health is too often ignored in psychiatric wards, how can we have hospitals that don’t provide treatment? Physical health problems do not disappear as soon as a diagnosis relating to mental health or learning disability comes along. Treating the whole person is the responsibility of whichever service, and whichever professional is meant to be providing care for you.

Similarly, the CQC report's examples of ward staff not doing anything to stop intense pain, get someone their dentures, glasses or even a change of clothes for over a week casts some doubt on the willingness of some hospitals to provide basic care. Doesn't that echo Mid-Staffs? Surely that must change? But what will change if even a case as clear cut as Connor’s does not provoke immediate and meaningful action?

#justiceforlb

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. 

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”.