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Table 5 Patient safety issues and underlying contributory factors highlighted in the study

From: The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study

Type of issue Contributory factors Examples
Inadequate provision of basic nursing care Lack of staff knowledge or experience to recognise the additional needs of patients with intellectual disabilities Staff nurse (free text on clinical staff questionnaire): ‘I have also seen people avoid feeding these people due to being unfamiliar with them. I have also seen people leave drink and food out of reach for the patient and not offering this to them regularly.’
for example Staff avoidance of patients with intellectual disabilities due to the perceived additional workload or due to fear of these patients Person with intellectual disabilities (interview): ‘I sneaked off and got a drink. See we were forgotten… three hours later they still ain’t coming with my coffee… it happens quite a lot sometimes. If I was a normal person I’d get treated a bit better, like a proper person. “I can’t deal with this person”.’
lack of monitoring of patients’ general wellbeing and comfort,
Over-reliance on carers to provide basic nursing care, or incorrect assumptions that carers will do so Carer (interview): ‘The carers were left even to the point of where to get the sheets to change the bed… [the nurses] didn’t come near him, very scared of him.’
lack of pressure area care. Ward manager (interview): ‘Some nurses shy away from difficult patients. So if there’s a family member there or a carer then they’ll probably quite happily devolve some responsibility to them.’
Misdiagnosis or delayed diagnosis Diagnostic overshadowing Example provided by Director of Operations: A woman with intellectual disabilities attended Accident and Emergency with a carer. During the triage process, the patient was fiddling with the equipment used to take her observations. The observations were not within the ‘normal’ range and the nurse assumed that this may be because of the patient’s interference. The patient and her carer were requested to sit in the waiting room. The patient deteriorated rapidly during her wait and ultimately died.
A man with intellectual disabilities attended A&E on his own as he had noticed blood in his underwear. He had difficulty articulating his symptoms and was sent home from A&E as staff incorrectly believed the man was drunk. Later on, a carer noticed the blood and the man returned to A&E. He had a rectal prolapse which required emergency surgery. (Example provided by Community Intellectual Disability Nurse)
Emergency care practitioner (free text on clinical staff questionnaire): ‘I once found it difficult to assess a young patient with intellectual difficulties who appeared agitated after a head injury. I had to rely on the information given to me by the mother which was not accurate. The patient was discharged and returned a few hours later with an inter-cranial bleed. This could have been prevented if I had been able to assess the patient better and more thoroughly.’
Difficulties in communicating with the patient about symptoms and medical history
Delayed investigations and treatment Failure to provide reasonable adjustments to enable the patient to equitably access the service Example provided by intellectual disability liaison nurse: A man with severe autism needed to have an anaesthetic before a procedure in a day clinic. After waiting for two hours, he became so agitated that the planned procedure could not proceed.
  Communication breakdown with the multidisciplinary team, or between staff and carers, leading to a lack of co-ordination of care Radiographer (free text on clinical staff questionnaire): ‘Frequently, when making appointments, we are not informed that patients have learning disabilities and doctors will request scans which when the patient arrives to have, it is immediately clearly completely inadequate for such a patient to be able to cope with the scan requested and therefore has to be abandoned.’
  Communication difficulties between staff and patients with intellectual disabilities Family carer (interview): ‘We literally ran round (to try and obtain a timely ‘best interest’ decision to enable her profoundly disabled son to have an urgent procedure to unblock his percutaneous endoscopic gastrostomy (PEG) feeding tube ) What they should understand is that the PEG is his lifeline, the food, water, if that’s not working, he can’t swallow (…) and that’s where we run into trouble. People don’t always get it, they don’t understand that there’s urgency.’
  Failures in recognising and treating pain Person with Intellectual Disabilities: A couple of times on [the ward] I tried to get their attention, I was in pain and needed medication. I had to get my mum to speak to them and she had to complain, saying I need medication for my pain.
  Delays due to time taken to establish patient capacity Consultant physician (interview): ‘[The patient] had cancer and needed surgery. I didn’t realise that he didn’t have the capacity to say ‘no’ to the operation. He didn’t want the operation, and I just thought that was that. But [Intellectual Disability Liaison Nurse] came along and asked him, ‘What do you think will happen if you don’t have the operation?’ and he really didn’t know. He didn’t have the capacity. So it became a best interest decision, and we decided to do the operation.’
  Patients less likely to challenge errors or delays Paid carer (interview): ‘Because the gentleman screams when he is touched, the nurses at the hospital would not touch him. They said ‘no, we can’t, he doesn’t want us touching him’. (…) The doctors and nurses on the ward said ‘the best thing is to let nature take its course and let him die’. This was despite no medical or nursing assessment.’
Family Carer (interview): ‘[The doctor in A&E] took me to one side and he said, “What sort of quality of life is she going to have if we pull her through this?” And I said, “She’ll have a fantastic quality of life, she’s got close family, she’s got excellent carers, she’s got lots of things to look forward to in her life.” And he said, “Well, it’ll be up to the ICU team whether or not they’ll treat her, you do realise that she isn’t going to survive if we don’t treat her?”‘
  Patient may fail to comply with investigations or treatment Paid carer (interview): ‘If my staff had not supported [patient], he would either be in a coma or dead because they just wouldn’t have given him any medical intervention.’
  Staff misunderstanding of Mental Capacity Act, or lacking confidence in using it Ward manager (interview): ‘One thing, personally, which upsets me the most – I know they have intellectual disabilities and it’s not very severe sometimes – but they just put all of them when they come in, “Not For Resus”.’
Non-treatment decisions and DNACPR orders Erroneous staff assumptions about the patient’s quality of life
  Staff fear of treating patients who are perceived as ‘challenging’