For people with learning disabilities the world can be a bewildering and strange place to get to grips with, but in hospitals it can be even worse.
Sometimes members of staff at a busy hospital simply fail to understand what patients with learning disabilities need, which leads to longer waits or failures to provide the right treatment and care. And this lack of understanding can be seen in all staff, from junior to the most senior.
People with learning disabilities make up an estimated one in every 50 hospital patients. But they are largely invisible within hospitals, because there is no effective way to flag them up. Without knowing who they are, staff aren’t able to recognise and address what these patients need.
In a recent study, we found worrying examples of where patient safety has been compromised include a lack of basic nursing care such as providing someone with food and drink.
The study was set up to investigate the factors that promote or compromise the safety of patients with learning disabilities in NHS hospitals. Six hospitals in England took part in the study, which was conducted over 21 months. The research team used questionnaires, interviews and observation with senior hospital managers, clinical staff, patients and carers – a total of 1,251 participants. We also looked at hospital policies and incident reports.
Indifference and discrimination
In 2007, Mencap published a high-profile report titled Death By Indifference. It said six deaths which could have been avoided were due to discrimination in hospitals. Since then, other studies and government-commissioned inquiries have shown how widespread this poor provision of healthcare is for patients with learning disabilities.
In 2013, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities investigated the deathsof 247 people with intellectual disabilities, and found that people with learning disabilities died on average 16 years younger than people in the general population. They concluded that nearly half of these (42%) of deaths were premature, and this was mostly due to failings of the healthcare system (however, a control group of people with learning disabilities did not experience this level of healthcare failings).
The purpose of our study was not to see how widespread such failings were but to understand what makes for good and safe hospital care. Why, despite consistent national guidelines and recommendations for best practice, do these failings still occur?
None of the hospitals we studied was consistently good or constantly poor. There were examples of outstanding practice such as changing hospital routines to accommodate specific needs.
One patient, who was terrified of hospitals, was offered sedative medication in the car park before treatment began. Another underwent several procedures under one anaesthetic, which involved collaboration between clinicians from a number of different specialities. A third was given something that bleeped so he didn’t get anxious in a small waiting room.
The appointment of a specialist learning disability nurse, whose job it was to improve care for patients with learning disabilities, also led to clear improvements. Ward managers can also have a positive effect.
But there were also poor examples in every hospital. And special hospital policies were no guarantee that clinical practice improved.
Upsetting examples of compromised patient safety were found across all hospitals. In one case, a patient who had problems making himself understood was sent home by Accident & Emergency staff who incorrectly thought he was drunk.
In another, abnormal test results were not acted upon because staff assumed they were due to the patient fiddling with the equipment. The patient deteriorated rapidly and later died. On a simpler level, another patient with learning disabilities noticed that the refreshment trolley often passed her by.
Hospital staff typically relied on untrained carers to carry out nursing tasks for which they were not always suited, including toileting and, in one case, even taking the patient’s blood.
Conversely, the expertise and knowledge that carers have about patients isn’t always sought by hospital staff. This, too, can lead to delays and compromised safety. One mother, for example, told hospital doctors her adult son was unable to cope with lying on his back for an investigation. When a doctor later reported that the patient had panicked during the test, the patient’s mother simply said they hadn’t listened to his parents.
Treating people differently
We found many hospital staff thought people with learning disabilities needed to be treated “just like everyone else” and were reluctant to label them as “different”. While this might be true for the level of care that everyone expects, it’s clear that people with learning disabilities have specific needs. If these are ignored, that level of care falls.
A poor understanding of how to deal with people who had issues with mental capacity, for example, results in compromised treatment. We found staff were often unclear or unaware of what to do in certain situations when patients had trouble expressing their consent or opinions. In such cases, treatment was sometimes not offered – when what should have happened was an assessment of mental capacity and, if the patient was found to lack capacity, a treatment decision based on “best interest”.
We can and should do better in our treatment of such vulnerable patients. And all these findings suggest that even when policies are in place, they aren’t necessarily working. We noted a lack of clear lines of responsibility and accountability for the care of each patient with learning disabilities. It’s time these were put into place.