Adrian Hawley, PIC, had the chance to listen to Dawn Benson, a senior lecturer and researcher at Northumbria University, at an AVMA Best Practice in Quantum Conference in Liverpool in March 2017. He was so moved by her talk, he felt he had to share what Dawn said about the effect a Clinical Negligence claim for compensation has on a family. This feature is a combination of the study undertaken by Dawn and the first-hand experience of her talk.
Avoidable harm in healthcare is often exemplified in terms of fatalities, although there are many people who being individuals, patients and their families and indeed professionals who live with the lifelong consequences of avoidable harm. Her son Michael is one of those people. Michael experienced avoidable birth injury and as a consequence he lives life as a disabled person. It’s Dawn’s experience that as Michael’s mother and as an academic in disability studies which is a branch of sociology that led her to undertake her research work a few years ago.
The work is about parents, it’s also about professionals and it’s about the organisations that those professionals work for. But above all it’s about reliability. The study started with a very straightforward question ‘why do parents of children who are avoidably harmed in the birth period pursue claims for clinical negligence?’
Dawn started the study because she was interested in it. She also had personal reasons for doing so; she had pursued a claim for clinical negligence.
Why Parents Pursued Litigation
The parents offered a variety of reasons for bringing litigation and those reasons did not necessarily remain the same throughout the process of the claim. In fact, motivations for pursuing litigation typically changed as parents gained experience of bringing up their birth injured child. Usually they had experience of the same motivations as each other only at different points in their individual litigation journeys. The data also suggests that partners may differ in their motivations for pursuing litigation and have distinctive hopes and expectations of what the process could achieve.
Parents specifically identified seeking explanations, resolution and outcomes which would protect others as initial reasons for pursuing the claim. However, as time moved on it became apparent that a deep fear of dependency upon the state increasingly strengthened their motivation, in all cases this is what the families focused on towards the end of the litigation process, usually at this point they had given up hope of achieving any of their other aims.
The parents wanted:
- answers about what had happened, to find out the truth
- lessons to be learned to protect others in the future
- to achieve some form of resolution
- to be financially independent of the state for support services.
Whilst many – but not all – parents expressed feeling some form of initial anger towards maternity professionals they eventually developed their own complex narratives around the birth injury event and in doing so made sense of the events in ways which dissolved any desire for individual blame. Rather they recognised that systems, technical skills and above all cultures were responsible for the errors which contributed to the circumstances of their child’s injury.
After completing litigation parents were left with a sense that they had not resolved their anxieties; that litigation in itself does not provide all the answers they seek, although it does go some way to securing their child’s future in making them financially independent of the state; neither does it promote professional learning.
We insured her future with the claim, we ensured she’s got money to provide for whatever she needs for the rest of her life but I don’t think we made any progress in getting any answers or changing anything for anyone else which I had hoped.
Message to Legal Professionals
The data reveals that, for parents of children avoidably injured at birth life is shaped by a discourse of disabling reductive constraints as their lives become dominated by the involvement of, and surveillance by, others. Families who have contributed to the research depict professional intervention as often diminishing, rather than enabling; of the chance to build family life in ways of their own choosing and makes clear there can be no doubt that having a child disabled through avoidable birth injury completely alters a family’s life trajectory.
Below are some examples of feedback from interviewees, along with key messages for lawyers and medical negligence professionals (in bold):
Parents identified aspects of the litigation process which were particularly difficult for them and they offered messages to legal teams, expert witnesses and deputies which expose inconsistencies and opportunities to improve practice.
The process of litigation was like living in a goldfish bowl – parents are concerned that their home and their lifestyles become a project for expert witnesses as well as statutory sector service professionals and they lose their privacy.
“The other side’s technical expert said: “Oh, you know, I think that you are overly bonded with your daughter and you need to set some boundaries and some distance.” I really felt like I wanted to stick two fingers up at them and tell them where to go. But, you know, I didn’t. I sat there and smiled politely and said yeah, this is because just so that you know why I’m overly bonded with her, is because one of us sleeps with her. She has epilepsy. We know she has constant seizures when she’s asleep from her last EEG, and I know too many children that have died, I don’t care if you think I’m overly bonded with her…”
Expert witnesses: do your homework – read the notes before the visit. Parents have been traumatised and reliving the birth event with expert witnesses sets them back in their recovery.
“I had to tell it so many times that I just sort of it also means you have less closure on it ‘cos you’re constantly having to tell the story over again. Do they really need to know this, three speech therapists do they really need to know about his birth? It’s the endless going over.”
Minimise the number of appointments – generally parents want single experts.
“The amount of time spent doing assessments, it didn’t warrant it. We both needed to take a couple of days off work each that’s four days pay lost and then we needed to take her little brother and stay in a hotel.”
Show empathy – a positive outcome in terms of litigation is not necessarily what parents want. They are often torn between recognising that their child will need the financial award and being disappointed with the knowledge that the event was avoidable.
“They came into this very room. ‘Oh, hello, lovely to see you. Congratulations’. I just felt it was so inappropriate, because, really? What – congratulations they’ve admitted that somebody was wrong and ruined my life.”
Parents also experience harm – although the child has been physically injured parents are psychologically harmed through the birth injury event which impacts upon their ability to trust professionals to care for their child.
“It all made me think about not ever trusting anyone to look after him, I think I am like my friend….who, her daughter was starved of oxygen and they used the same solicitors as us. She is very overprotective and can’t let other people do the looking after. I think I am like her and it’s strange that other parents for special needs kids aren’t the same; maybe it’s just us after we have been through this thing. We can’t trust anymore… I am in a permanent state of anxiety.”
Be realistic – parents want litigation professionals to recognise that the award does not truly put them back in the position they would have been in but for the injury. It does improve life but quantum should take account of the child in the context of the whole family in all respects. Parents want honest discourse around quantum and either awards which enable inclusive lifestyles or acknowledgment that the award is not going to enable them the ordinary freedom which non-disabled families have.
“I got really annoyed throughout the claim at the game aspect of it…the solicitors they almost, in a funny kind of way enjoyed this element of the game, even our solicitors. To them it was them kind of doing their jobs and at times I got really upset and they say well that’s just the way they play it. I said, I’m not playing a game, this isn’t a game to me.”
“To them, it really was. I’ve never done this before so I wasn’t expecting this. We were told that we need to over-egg our claim. We were told ‘you always ask for more than you want because you’re not going to get it and if you ask for what you want you’re not going to get it so you ask for more than you think you’re ever going to get because they’re always going to knock you down…can’t we just sit around like sensible human beings and talk about what we really need? Yes be honest, not over egg this end and over egg that end, then meet in the middle. Let’s cut all that out.”
It became apparent that parents were having different experiences of their relationships with the deputy and that parents are not aware of the different types of deputy. They are not really given enough information about the role of the deputy or indeed the options. Perhaps more concerning is the way parents all go through the same ordinary difficulties over for example holidays, housing and education. All things which deputies/private client departments have extensive experience of; there would appear to be many missed opportunities by deputies and indeed the Court of Protection for information sharing.
Messages for Health, Social Care & Education Professionals
After experiencing an avoidable, life threatening birth injury event parents have little choice but to learn quickly to become reliable parents and carers for their children, which they do by enacting the characteristics of what Weick and Sutcliffe (2007) call a ‘mindful infrastructure’.
High Reliability Organisations (HROs) are organisations which have less than their share of errors. They understand that the factors which make people human can increase the vulnerability of their operations, they focus upon possibilities for failure and thereby mitigate against it.
Parents, like ‘High Reliability Organisations’, are concerned to make sense of their experience and do this by tracking small failures/errors, resisting oversimplification, remaining sensitive to operations, maintaining capabilities for resilience and taking advantage of shifting locations of expertise. Such characteristics exemplify ‘mindfulness’ and the capability to discover predict and manage unexpected events.
Narratives of parents involved in the research suggest that systems and cultures in health care settings and hospitals, where their children encountered birth injury, were not characterised by features expected of High Reliability Organisations. Moreover, health, education and social care services which parents went on to encounter also did not have in place systems to cultivate or sustain themselves as Highly Reliable.
The research suggests the response of parents to avoidable birth injury offers professionals a powerful resource for working towards High Reliability practices. It concludes that, it is over simplistic to see the pursuit of litigation as an instrumental manifestation of anger, distress or denial following avoidable damage to a child. Rather, the experience of parents who pursue litigation adds considerable under-standing to the complexity of disabling consequences of birth injury and how these can be minimised.
The families who took part in this study look back at avoidable birth injury as a tragic event knowing that if the organisations had put the right people in the right place at the right time they and their children would not have been harmed; they want High Reliability principles to surround childbirth.
Dawn Benson is a senior lecturer and researcher at Northumbria University. Her academic interests are in Disability Studies and education. Particularly Dawn is interested in the process of inclusion and inclusive education within the current UK education system and dichotomies which exist between the SEN legal framework and anti-discrimination legislation. Dawn’s recent research on Birth Injury, Disabling Families and Enabling Human Factors engages principles of Human Factors and safety systems within High Reliability Organisations to highlight.
Adrian Hawley is Head of Court of Protection Costs at PIC. To contact him, please click here.