By Peter Walsh, Joanne Hughes, James Titcombe 30 November 2022
A recently published report highlights the shortcomings in care provided by the NHS. Peter Walsh, Joanne Hughes and James Titcombe emphasise how millions could be saved if people were empowered early on to have their needs met without the need to turn to litigation
NHS scandal after NHS scandal over decades has sparked outrage and sympathy with the people affected having had to struggle on their own and against all the odds with a system that is in denial. Yet to this day, nothing has been put in place to help people in these situations get the independent, specialist advice and support they need. It is unlikely that some of these gross failures would even have come to light at all without the brave and persistent efforts of heroic patients and families. Take those affected by events in the East Kent maternity scandal – the latest one to hit the headlines with Bill Kirkup’s independent inquiry report.
Before them, the “Cure the NHS” campaigners whose efforts led to the Mid Staffordshire Public Inquiry; and the Morecambe Bay campaigners who also had to move mountain and earth to get the inquiry that was needed. However, in addition to these large-scale and high-profile scandals, smaller scandals are taking place every day, with people who have been harmed or lost loved ones as a result of patient safety failures in the NHS being left to navigate the complex system of NHS investigations; inquests; complaints; health professional regulation and legal issues on their own. Or even worse, like those in the afore-mentioned scandals, people are faced with a wall of denial, deceit and even lies and dirty tricks. The NHS spend millions on expensive consultants and on lawyers to try to avoid coroners criticising them, but do not spend a penny on funding independent advice or advocacy for the patients and families it has caused avoidable harm. The best you can hope for is being “signposted” to a small number of admirable but un-resourced charities in the hope they might be able to help.
A report published by the Harmed Patients Alliance, aptly named “Signpost to Nowhere?” -the case for funded independent advocacy, advice and information for patients and families following patient safety incidents” shines a bright light on this neglected issue and offers a way forward. The report is being considered at a roundtable meeting of key stakeholders also being held, including representatives of NHS England; the Care Quality Commission; the Patient Safety Commissioner; the Parliamentary and Health Service Ombudsman; NHS Resolution; the Healthcare Safety Investigations Branch; and patients’ and advocacy groups. It is hoped that this will result in system-wide acknowledgement of this important and currently unmet need and a commitment to do something about it.
The report points out the irony of the NHS focus on “just” culture when it is prepared to abandon the people it has harmed in this way. It suggests that the NHS owes a “moral duty of care” to attend to the needs it creates for people affected by avoidable harm in the NHS to support their wellbeing, trust in the NHS and their relationship with it. As the “Harmed Patients Pathway” – a project by the charity Action against Medical Accidents and the Harmed Patients Alliance points out, access to independent advice and advocacy is one of those needs the harm event creates. But it is probably the biggest and most glaring gap.
People are more likely to turn to a lawyer if no other independent, professional, and healthcare harm specialised source of advice and support is available to them
The report points out that (quite rightly) the government aims to ensure that anyone with a complaint about the NHS has access to independent advice or advocacy. That applies as much to complaints about car parking or hospital food as it does complaints about poor treatment which has caused harm. It spends £15.1m a year on independent NHS complaints advocacy which helps people navigate the NHS complaints procedure. But that is all it is funded to do. So, you are guaranteed independent help with a complaint about car parking or if you just want to make a complaint, but absolutely no funding is put in specifically to ensure people who have suffered harm in the NHS get the specialist and wide ranging independent information advice and support they need, to help them have their needs met.
Part of the problem, the report says, is that each part of the healthcare and regulatory system is purely focused on its own specific area. For example, the complaints system; health professional regulation; litigation and inquests; or patient safety investigations. An approach which attends to the holistic needs of the patients and families affected is recommended, rather than different parts of the system striving to “manage” people through their own process. Not only would that be much more helpful to the harmed patients and their families, it would allow for economies of scale. What seems like a momentous challenge to one part of the system is much more manageable when dealt with systematically.
The report also quotes academic and other evidence that shows empowering people via independent advice and advocacy not only reduces their distress, it also leads to massive cost savings. Research commissioned by NHS Resolution for example found that strong motivations for people who chose to take legal action was the poor investigation, poor communication and a lack of honesty with them. Empowering people through independent help is known to reduce these sorts of outcomes. Millions might be saved if people were empowered early on to have their needs met without the need to turn to litigation.
People are more likely to turn to a lawyer if no other independent, professional, and healthcare harm specialised source of advice and support is available to them. People are more likely to refer a health professional to a regulator if they haven’t had independent information and advice about alternatives. People are more likely to be meaningfully involved in a patient safety investigation if they have independent support to help them understand the benefits of involvement and trust the process, and better investigations can help save lives.
It is a scandal that people the NHS has harmed can be abandoned in this way. The lack of attention to addressing the need for independent advice and advocacy that has been stressed by hundreds of patients and families attending countless ‘listening events’, and many major inquiries, is causing resentment and a suspicion that the system does not want harmed families to be well informed and empowered to have their needs met when they are harmed. This all leads to further ‘compounded’ or ‘second harm’ to the very people who have already been harmed. Is this report and summit a catalyst to this being addressed at long last? We certainly hope so.