Week 2: Inquest inequalities #107days

If someone dies unexpectedly in detention (in prison, immigration services, police custody or under mental health sectioning) there is a legal requirement that the coroner must hold an inquest. An inquest is a public investigation to establish who the person was, and where, when and how they died. If someone dies in the care of the state, then article 2 of the European Convention on Human rights (the right to life) is evoked, and the coroner may decided to hold an article 2 inquest. This is more thorough and far reaching than inquests into deaths that do not engage this duty.

For further info, INQUEST have thorough info and excellent caseworkers to provide advice.

This all seems fairly straightforward but in practice is a lot murkier and difficult for families to negotiate. Here are some of the issues that we’ve learned over the past year or so.

1. The NHS can use public funding to pay for legal representation at inquests

Astonishingly, NHS trusts are able to fund expert legal teams while families can only rarely access exceptional funding to cover their costs. The criteria for exceptional funding is enormously complicated and confusing. The cost of legal representation is not only for attendance at the inquest (and pre-inquest review meetings) but involves a large amount of preparatory work. Our solicitor has read through extensive documentation and records, identified issues to be brought to the attention of the coroner, written submissions, created a witness list and repeatedly requested missing documentation from Southern Health. So far, this has cost around £14,000.

Last month a High Court ruling in a case brought by Joanna Letts (who was trying to establish whether her brother’s death was related to hospital failings) says official guidance on whether to provide legal aid has been ‘misleading and inaccurate’.

2. Inquests are supposed to be inquisitorial and not adversarial

In practice, NHS trusts may be very keen to narrow the focus of inquests to reduce potential damage to reputation and avoid negative findings by the coroner. Sloven had an expert barrister in representing the police and medical defence organisations at the first pre-inquest review meeting. He argued that an article 2 inquest was not necessary because the article 2 procedural obligations were met by the various ongoing investigations relating to LB’s death. He also argued the conditions for having a jury were not met because drowning was not an ‘unnatural’ death. The Minister of State for Justice and Civil Liberties, Simon Hughes, argues that families do not need legal representation at inquests. The coroner should make the process understandable. This is clearly nonsensical given the legal arguments banging back and forth between the Sloven legal team and ours.

3. Witness coaching

Witness coaching is clearly common at inquests. Rosi Reed documented the obvious coaching Sloven employees had undergone at Nico’s recent inquest. There have also been repeated questions about the behaviour of staff at Joshua Titcombe’s inquest, and the common view is that staff were clearly coached. Indeed, Dr Bill Kirkup in his investigation into what happened at Morecambe Bay had this to say:

We also found evidence of inappropriate distortion of the process of preparation for an inquest, with circulation of what we could only describe as ‘model answers’. Central to this was the conflict of roles of one individual who inappropriately combined the functions of senior midwife, maternity risk manager, supervisor of midwives and staff representative. We make no criticism of staff for individual errors, which, for the most part, happen despite their best efforts and are found in all healthcare systems. Where individuals collude in concealing the truth of what has happened, however, their behaviour is inexcusable, as well as unprofessional.

Kirkup’s report had 44 recommendations for improvements, number 30 is as follows:

30. A national protocol should be drawn up setting out the duties of all Trusts and their staff in relation to inquests. This should include, but not be limited to, the avoidance of attempts to ‘fend off’ inquests, a mandatory requirement not to coach staff or provide ‘model answers’, the need to avoid collusion between staff on lines to take, and the inappropriateness of relying on coronial processes or expert opinions provided to coroners to substitute for incident investigation. Action: NHS England, the Care Quality Commission.

It is explicitly clear that if a family hopes to establish what actually happened to their loved one then a legal team with expertise in getting beyond learned statements is necessary.

Yesterday the Public Administration Select Committee of the House of Commons published a report Investigating clinical incidents in the NHS. You can read the JusticeforLB response to it here, while we welcome it’s recommendations, we do not think they go far enough.

It is crystal clear that more reform is needed of the inquest system in the UK. The system is archaic and there is no parity of arms.

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Day 40: Musings from the Magic Roundabout #107days

We were delighted when Ermintrude offered to write a blog post for #107days. Day 40 shares her thoughts and musings, and we’ve named the post in honour of her pen name, but also in acknowledgement of the constant sense of being stuck on a merry go round in dealings with Southern Health.

merrygoround

This is what Ermintrude had to say in support of #JusticeforLB:

I wanted to write something to remember and honour LB, his family and people who are in similar situations now. I wanted to rage against systems that allowed this to happen but as I’ve read people’s contributions, I realise I can’t add more honesty than those who have experienced the utter despair and despicable treatment in the hands of health and social care professionals.  So I am just pondering some memories, fitting them together and thinking about what I can do to promote better care and better systems for people who have learning disabilities and for all people who are subject to the vagaries of a disjointed and unempathetic system.  Here is my modest contribution.

When I was at school, we had weekly trips to a local residential home for people with learning disabilities. It was billed as ‘community service’. We could go instead of playing hockey. My aim wasn’t very noble when I volunteered, I have to say. I wasn’t very good at sports. Looking back though, at some of those afternoons, I remember how we didn’t really see an us/them and it became more than a way to avoid hockey. We laughed, we joked, we played silly board games, chatted about music and television and school. It became a fun way to spend the afternoons because we were simply hanging out with people who laughed at our jokes and who we enjoyed being around.

Looking back over the thirty years since then, I wonder whether this was really anything revolutionary we were doing. Or if we just need to stop looking for answers and try and find some of the solutions we have already found but just do them better.  I went to university and dabbled in a little voluntary work with older people. I joined one of those countless ‘societies’ which are on offer which did little jobs around the house for older, isolated people. I pity the poor women (it was mostly women I happened to visit) who had me wallpapering their front rooms for them but in my defence, I think, in return, we always chatted for far longer than we worked. Big society. Right.

And then past university, which is where I’m going to settle a while, I picked up on the voluntary work with CSV and went to spend a year in a residential home (with staff accommodation attached as it was in the middle of nowhere) for adults with learning disabilities and epilepsy.

It is here that I’m going to settle a while because it was where I learnt a lot about epilepsy, learning disabilities and the relationships between the two. Everyone who lived in the home had epilepsy. We were given core training in managing situations, particularly when people had seizures and as a new volunteer, while I was supposed to be doing the ‘fun’ stuff in addition to the staff – like taking people out in the local area, running games groups and discussion groups in the evenings and generally just wandering around ‘being sociable’, a big part of my morning routine was supervising baths.

I remember feeling quite awkward initially about having to watch people having baths. Of course, we did it as subtlely as we could. We had privacy curtains surround the bath with a small gap to observe and often I (as all the staff would – this wasn’t something different I did) we would chatter away to people as they sat in the bath, just making sure there were no long silences or that I didn’t monopolise the conversation too much. Always, we listened out for any splashes. I did have to pull the plug out a few times when people had seizures in the bath (that was the first thing we were to do). And thinking of a man, who drowned in an NHS run hospital where the care and supervision should have been there, I often thought back to those days when we would all be taught, from the very junior people like me how to manage seizures in baths, it makes me angry. That was 20 years ago.

I moved on after that job to work in learning disabilities services for a number of years until I qualified as a social worker and switched to work with older adults but a part of my heart stayed there.

So how have we got to a situation where services exist and an organisation exists which provides them in an NHS healthcare setting where the minimum standards were not met. We aren’t talking good quality care here, we are talking about providing dangerous and neglectful care. Care which contributes to the death of people, to the death of Connor.

There are a number of things which can be put into the basket.

Firstly, poor organisations delivering poor services. This is no excuse. This is not about ‘modern’ or ‘not modern’ ways. I was doing this in 1993. I’m sure there were many problems with the places I worked in but they provided far better care, 20 years ago, than Southern Health manages now. And the CEO talks of ‘not working in a modern way’. I wonder how often she has sat outside a bathroom, listening for someone in a bath and listened if they had any seizure that she would have to act on. I wonder. I wonder how often, and maybe I’m misjudging her, she has sat with the people who receive her services, in the settings and environments which have failed to provide the basics like safe seclusion facilities, like functioning defibrillators and listened. Truly listened.  While there are poor services and these services are allowed to continue to exist without censure, we can’t claim that we have a health service to be proud of. I worked in the NHS for many years. I am proud of the work I did. I’ve come across many many wonderful doctors and nurses but as an organisation, we have to be able to criticise parts without being made to feel we are criticising all. Some parts don’t function.

Secondly, and this is linked, poor oversight and lazy commissioning. Commissioners have a responsibility to check the quality of the services which they are paying for and to hold providers to account. They hold the purse-strings and have to be assured that they are happy with what is being provided. This is not about ‘avoiding scandals’ although I fear sometimes it might be. It is about seeking the best. There seems to be a lack of aspiration around some services for people with learning disabilities and my feeling is that this gap is particularly evident in health-based settings. We can talk Winterbourne endlessly and good work may be being done but we need to see more action and less rhetoric. The commissioning and commissioners are lazy because they don’t scrutinise or challenge.

Thirdly, there is the societal assumptions and expectations for people with learning disabilities. We talk about the watershed of Winterbourne but Connor died in the post-Winterbourne landscape. We talk about people moving nearer home as if that is a cure-all but poor care happens near home too. And not everyone has a home to go back to. I remember some work I did once with a man with profound learning disabilities who had no family. We can’t make assumptions about people having families who will advocate and fight for them. As a society we need to fight as strongly as those families might for those without. We fail miserably here. The expectations and assumptions are set low because there isn’t much thought or consideration for difference. Some organisations say the right words but there are often lazy assumptions made.

So is there scope for change?

I hope so. We have developed a health and social care system which is routed in jargon and exclusion. I worked in health and social care for 20+ years and it confuses me. How can we expect others to understand when we can’t ourselves. We have different funding streams and different funding levels for different things. Some pots are mixed up and some are centrally commissioned, some locally commissioned, some contracted out by provider services. Some are charged and some aren’t. What a mess we have created.  Instead of transformation being what it actually means, it has been tacking on poor systems (such as the extra complicated way that personal budgets have been rolled out) onto poor systems. Where is the complete redesign? The NHS moans and groans about too many changes. No, it’s too many of the wrong kinds of changes. There needs to be change. There needs to be integration but there need to be sensible people driving it. People who experience the services as recipients – not those cozied up to each other in Whitehall and local government/CCG silos chatting to the same people they have done for years and exchanging thoughts over golf in Surrey.

My hope is that we can drive these changes. For LB, and for all who need to have their voices amplified so that things can move on. Because they need to.