Complaints and self advocacy

Last year’s Patient Experience in England overview covered the Parliamentary and Health Service Ombudsman’s “Making Complaints Count” report. It set out proposals for more consistent and responsive complaints handling, and called for a “cultural transformation… to recognise complaints as a valuable source of learning”. The following reports, published in the twelve months since, offer some pointers to improvement.

“Most patients and families submit complaints to prevent harm from occurring to others” says this paper. And from the provider perspective, complaints “are increasingly recognised as a critical source of insight for quality improvement”.

But does complaints handling actually lead to improvement? The study found four areas where “the design of national rules and policies functioned to undermine a patient-centric and improvement-focused approach to complaints”. These were as follows:

• Muddled routes: a “confusing landscape of routes for raising concerns” and confusion over the role of PALS (Patient Advice and Liaison Service) as against the complaints team. • Asymmetry: investigative procedures “predominantly structured to judge the ‘wellfoundedness’ of complaints”, with internal evidence regarded as superior. • False information: the KO41a official complaints data collection system seen as inappropriate, or even as a source of “false information”. • Adverse incentives: performance targets leading to pressure not to exceed response timelines, or creating adverse incentives such as a focus on reducing complaints volumes.

The authors emphasise that procedural problems like these are not necessarily “a consequence of sinister or malign organisational actors seeking to impose silence”. Instead, they can be seen as a case of “well-intentioned staff confined by an overly formalised and bureaucratic system”.

The paper finishes with recommendations for change, including patient involvement in complaints investigations, the establishment of independent investigation bodies, and more meaningful data analysis.

This paper takes a similar view: “Mechanisms for raising complaints and concerns often disappoint those who use them, or fail to produce a resolution that meets their expectations”.

The authors point to one cause of difficulty: the fact that complaints come from highly personalised experiences and motivations, but are met by complaints procedures “oriented towards organisational objectives”. Another way to describe this is as a difference between “communicative rationality” and “functional rationality”.

Communicative rationality is what happens when people engage in deliberation, constructive disagreement, and negotiated consensus. Functional rationality, however, “belongs in the domain of the System”. It enables people to work towards organisational objectives that have already been established, and are not up for negotiation.

Straightforward concerns about uncontroversial matters can be well served by functional pathways. But many patient concerns are more complex – and when complex concerns are channelled into predetermined pathways, they can become “stripped of meaning”. The overriding goal is “packaging them in a form that could be processed”. Ultimately, “the collection of patient experience data... can become estranged from understanding patient experience itself, preoccupied instead with processing data for its own sake”.

The authors do not suggest that existing functionally rational processes should be jettisoned. But they do suggest a greater role for communicative rationality, via processes that can allow for a more sense-making response. This could “ensure that wider considerations were deliberated, rather than being discarded by functionally rational processes that had no means of addressing them”.

Complaints can be seen as a form of “self advocacy” by patients. But they are of course reactive, with concerns being raised after an error has occurred.

This study reviewed ten years’ worth of patient safety incident reports from the National Reporting and Learning System, and looked at self advocacy as a proactive safeguard. Findings included the following:

Patient trajectory was characterised by a lack of active decisionmaking and communication between teams. Errors included poor documentation, patient monitoring errors, and lack of continuity of care.

Arrival to diagnosis featured problems such as diagnostic error, often because the system relies on the most junior (and inexperienced) doctors seeing patients first.

Management of care created a higher risk of patient safety incidents when there were multiple handovers between teams, and transfers between wards.

The researchers found a system largely dependent on patient advocacy. This was “necessary due to a lack of care co-ordination during the patient journey, resulting in patients having to remind staff about investigations or referrals”.

Worryingly, “patients who were unable to self-advocate were often overlooked due to system pressures”. This points, say the authors, to “the necessity of self-advocacy from patients as a safety net”.

Self advocacy might be necessary – but it can be difficult within hospital cultures that deter it.

This study found that when patient need exceeds labour resources (ie at at time of workforce shortages), medical care tends to be prioritised, with a corresponding reduction of ‘fundamental care’ (personal cleansing, dressing, toileting, eating and drinking etc). In spite of this, “patients can be reluctant to ask for care for fear of being labelled difficult”.

Patients interviewed for the study talked about “staying out of trouble” and “not wanting to make a nuisance” or “pester staff”. They tended to keep an eye on nursing staff to decide whether and how to ask for help with their fundamental care needs.

In some cases, “they would wait to make fundamental care requests... waiting until the next shift if necessary”. But sometimes “they stopped asking for care because they felt it would not be given”.

The study notes that “patients who were most in need of physical support and patients with cognitive impairments experienced serious omissions of care”. And it finishes by stating that unless nursing staff can maintain an “engaged” interaction with patients, the idea of “patient involvement in hospital care decisions will remain at the level of rhetoric”.