Table 2

Types of reasonable adjustments that were important to many people with intellectual disabilities

Type of reasonable adjustmentQuotes
Adjusting communication, taking into account the patient's receptive and expressive verbal capacityCarer (questionnaire): ‘Things were not explained to the patient in a way she could understand. Was confused and frustrated.’
Carer (questionnaire): ‘Staff allowed patient time to process information and provided additional easy to understand explanations of condition and exercise programme.’
Addressing the patient's ability to cope with different environments, changes in routine, unfamiliar procedures and unfamiliar staffPerson with intellectual disabilities (interview): ‘I'm not sure whether I'm going to be seen; sometimes—wait, wait, wait, wait, ages, ages, ages, ages to get seen’
Consultant anaesthesist (questionnaire): ‘Learning disability patients are dealt with on dedicated lists. They are given side rooms if done in day surgery. If they are on a main operating list they always go first. Their carers are allowed to be with them apart from in theatre. No visiting times apply’
Addressing the patient's need to change ways in which care/treatment is given

Carer (questionnaire): ‘The nurse said [patient] cannot be screened because she cannot sit up by herself and hold onto anything, therefore the screening cannot be done’
Carer (interview): ‘We went to [name of hospital], it was for an x-ray (…) I said we would need a hoist (…) So I called [the hospital's IDLN] and she met us there. She said, ‘It's all set up for you’ (…) The nurse came right away and said to [name of son], ‘We have your hoist ready, it's been charged, we knew you were coming’’
Including and supporting the patient's carers as expert care partners

Carer (questionnaire): ‘A member of staff came in to relieve us during the day for us to go and get drinks, food etc. This is vital support to us as our son will pull on and grab any tubes etc. So you can see how important it is to have someone with him at all times’
Carer (interview): ‘I told them he always has problems with diarrhoea when he is on antibiotics (…) They didn't take any notice of what I said, and they gave him the antibiotics and he had diarrhoea for 12 days’
Providing advocacy and support for mental capacityConsultant physician (interview): ‘[The patient] had cancer and needed surgery. I didn't realise he didn't have capacity to say ‘no’ to the operation. He didn't want the operation, and I just thought that was that. But [IDLN] 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’
Providing access to intellectual disability expertisePerson with intellectual disabilities (interview): ‘The only time that went well is when I saw the [IDLN].’
Carer (interview): ‘[IDLN] has done a lot of work and I have seen the difference. Dealing with the staff, receptionists, doctors, they are more understanding of [my daughter]'s needs’