How to make appointments more accessible to neurodivergent patients

Nurses working across primary and community care settings have been asked to consider changes and adjustments they can make to their clinics or appointments for patients who are neurodivergent, as part of a Nursing in Practice conference held in Liverpool.

Lisa Daniels, a community nurse in a health visiting team in London, discussed how sensory needs, executive function and communication differences can affect care, and urged nurses to explore how consultation styles could be improved to create ‘calmer, more inclusive’ experiences.

Ms Daniels, who has severe osteoarthritis and dyslexia, dyspraxia and dyscalculia, drew upon her own lived experiences of care, and the care she provides to patients, to offer general practice and community nurses with a series of key tips on how care can be made more accessible for neurodivergent patients.

Also a member of the Black Nurses and Midwives UK network, Ms Daniels stressed it was important to ‘see the person and not the label’.

‘I still feel like we’re not represented enough during clinics or in hospitals – having the appointments being accessible, and ensuring that it is inclusive – there’s still a lack,’ she said.

Sensory needs

A key aspect of improving consultations and appointments for neurodivergent patients was the need to ‘reduce the sensory load’.

Ms Daniels asked nurses to consider whether there are any harsh smells, bright lights or loud noises and whether they could help minimise them before and during appointments.

It is important to ask questions around sensory needs, including whether the lighting or temperature is comfortable for the patient, she noted.

‘For me, I remember when I was a patient, just not too long ago, the clinic room that I was in was very cold, and even though I was going through a lot of pain, all I was thinking about is, I’m cold [and] when am I going to be warm?’ recalled Ms Daniels.

‘So, in those 15-20 minutes of my pain assessment to be spoken about, all I was just thinking about is “I am in pain, but I am cold”. That was my focus. So basically, my care wasn’t met at all.’

She added: ‘This is the reasons why we need to think about sensory needs. The patient might not feel safe enough to express that they are neurodivergent. So, just ensuring with any patient that you see – “is the room temperature OK? Is the lighting OK?” Just to ensure that their needs are also being considered.’

Creating a ‘calmer clinical space’ was vital, said Ms Daniels, including by reducing visual clutters. In her clinic, for example, she described how she would ensure her coat is folded away, loose papers tidied up and that the room is clear.

Quiet rooms

Healthcare providers should also ensure there is a ‘quiet room’ or space for neurodivergent patients to use, if needed.

While she recognised providers were in some cases up against reduced space, these patients may sometimes need a quiet place to ‘regulate’ and ‘reset’ away from the ‘hustle and bustle’ of their surroundings.

‘Even if maybe for a couple of minutes you leave the room that they’re in, and just giving them some time to process all the information that you’re sharing with them is very important,’ she explained.

Processing time

Some patients who are neurodiverse may also need ‘processing time’ during appointments – to help them understand the information they are being given by a nurse.

‘I know some places, they have 15 minutes, 20 minutes for their appointments, but just factoring in that somebody, a neurodivergent patient, when you are expressing to them this new information, they need time to process,’ she said.

‘They need time to retain all this information that you’re sharing with them, and giving them time to ask questions is very important, because most of the time for me, even after this amazing [conference] day, I won’t process it now. I’ll process it when I get home or when I’m back at the hotel. Because it’s a lot of a change.’

Communication

Ms Daniels also shared the importance of communication and how this can affect patient care.

For example, she warned nurses against forming ‘language barriers’ – including by avoiding the use of metaphors or idioms, which some patients may take literally.

Nurses should also offer patients a choice of communication methods, including whether they would prefer something be written down or a visual aid such as a sign on the door to explain where their appointment is and with who. She also suggested providing patients with an agenda for their appointment on arrival.

Giving patients a choice of communication methods would be helpful, noted Ms Daniels.

‘Allowing them the time to answer all of this is important to gain that respect and that understanding with the neurodivergent patient,’ she added.

Executive function

Ms Daniels also used her presentation to discuss executive function – ‘a set of mental skills that help a person manage tasks, plan and achieve goals by controlling attention, managing thoughts and regulating behaviour’.

People who are neurodivergent may have difficulties with executive function skills and Ms suggested this could influence patients attending appointments on time – but she stressed ‘we don’t all function the same way’.

For Ms Daniels, she explained, she will set several alarms, write her appointment down, have it in an app, and set reminders for an hour before but for other patients, it could mean running late for an appointment or missing it altogether.

‘When we’re talking about executive function, it is [about] trying to raise awareness that if a patient is running late by five to 10 minutes, just for you to have a bit more patience, maybe to think, have they missed the appointment? Has something else happened? Have they forgotten? And maybe given them a call or a text,’ she said.

‘With every patient that I have, if my appointment is tomorrow, on the Wednesday or Thursday, I will send them a text a day before, if they are running late after 15 minutes, I’ll give them a call just again to remind them, and then also just factor in that they might have missed the appointment and to reschedule it as soon as possible.’

While she recognised she had more flexibility as a community nurse who controls her own diary, Ms Daniels stressed it was important to ‘have that mindset’ around executive functioning.

Wanting to be part of the solution

Ms Daniels said her motto had always been ‘be the change you want to see’.

‘I used to always complain and say “why doesn’t a nurse that looks like me talk about being neurodivergent?” and “what accessible support is there?”.

‘[Now], instead of me keeping on asking that question, I decided to be the person that I’ve always wanted to see.’

She added: ‘For me, I’m talking from a lived experience, and I guess I have the added benefit of being a community nurse and at the same time also being a patient.

‘I’ve seen both sides, and because of not seeing a lot of representation, that is why I want to speak up more for us.

‘I want to speak up for me because I want to add to the to solving the issue, not keep on complaining about it.’

Ms Daniels runs a social media campaign called You2CanNurse where she also works to support and employer nurses and midwives with disabilities and neurodiversity.