Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services.
The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist.
The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm.
It is important to note that designing services around patients is not exclusive to learning disabilities; designing services with ALL patients at the centre with their involvement is crucial for trusts to provide safe care.
The outpatient appointment
Attending an outpatient appointment, in my experience, is daunting at the best of times. First, there is the appointment date. Often you have had to wait an exceptionally long time for this appointment (providing the referral letter hasn’t been lost). The date and time are chosen by the Trust. There are some Trusts and specialities that will allow you to choose a time and place, but more often than not you are not able to choose and changing the date and time can prove tricky.
There are many reasons for a patient not to turn up for an appointment. These reasons and how to mitigate them are looked at by Trusts. The 'Did not attend' (DNA) rate is looked at by Trusts. DNAs have an enormous impact on the healthcare system in terms of increasing both costs and waiting times. Trusts often want to reduce these to:
- reduce costs
- improve clinic or service efficiency
- enable more effective booking of slots
- reduce mismatch between demand and capacity
- increase productivity.
Then there is getting there. Getting time off work or college, making childcare arrangements, getting transport… finding parking! Before patients even get to the appointment, they have often been up a while planning this trip. Imagine what this must be like for a patient with learning disabilities. This poses even more planning.
- What medication might we meed to take with us?
- Are there changing facilities for adults?
- Can we get access? Is there space to wait?
- Will anyone understand me?
- How long will we be there for?
- Do they have all my information?
Services need to be designed with patients' needs at the forefront: the ability to change appointment dates, the location in where the appointment is held, parking facilities, length of appointment, type of appointment, is a virtual appointment or telephone appointment more appropriate?
If you have a learning disability, you may have a family member or carer with you. If you have transitioned out of children’s services you will be seeing someone new, in a new environment. You may not have had the time to discuss the fine nuances to your care that is really important to you. You have now left the comfort bubble of paediatrics where you and your family had built up trust with the previous consultant and care team, and you are now having to build up new relationships. What is in place for you to feel comfortable? Has anyone asked what would help?
Reasonable adjustments such as a double-length consultation is a great way of ensuring people with learning disabilities have enough time to process information and are given time to answer questions. Extra time is only one of many reasonable adjustments that can be made.
I would like to reflect on a recent time when I cared for a patient with autism and I didn’t have all the information to enable me to plan care for them at this particular time.
This patient had spinal surgery and spent a very brief period on the intensive care unit. As part of my role as a critical care outreach nurse, I see patients who have been in the intensive care unit to check that they are doing well, that ongoing plans of care are in place and that they understand what has happened to them.
I read that this patient had autism, but I had no other information. I was unaware of how the autism affected her, if she needed a carer, what she likes, dislikes, how to approach conversations or anything that was important to her.
There is a health passport that can be used to aid exactly this information, this is filled out by the patient with their family or carer. Unfortunately, I could not locate the passport. I read the medical notes and went in armed with my usual questions and proforma that we use for all patients. Usual visits like this last from around 10 minutes (for a quick check) to an hour if they are a complex long stay. With the operation that this patient had, I was expecting to be with the patient for around 20 minutes.
After introducing myself to the patient, it was clear that the proforma I was going to use wasn’t going to work. Tick boxes and quick fire questions were not the right way of going about this consultation. This patient was scared. More scared than a patient without autism. Their usual routine was gone, they were unable to ask as many questions as they normally would as the nurses and doctors were busy, their surroundings were different, the food was different, new medications, new faces everyday – there was no consistency.
The ward round had just happened, the patient had a good plan in place and was due to go home the following day. Normally, this would mean that my visit would be a quick one as the clinical needs of the patient are less complex. This visit took me 90 minutes.
Not only did I not have the care passport to hand, due to the coronavirus pandemic I had a face mask on. I felt completely ill-equipped for this consultation. I knew I was missing vital pieces of information which would help me communicate with this patent more effectively. So much of our communication is from facial expressions. A smile for reassurance makes a huge difference. I now have yet another barrier to overcome to communicate with my patient in a way that they can understand and feel comfortable.
This particular patient asked many questions. This I had not factored into my day. I have a list of 12 patients to see, in between answering calls from staff on wards who have unwell patients for me to review. It’s too late to abandon the consultation or leave it for a less busy time. I’m at the patient’s bedside and I’m already committed to giving this patient my full attention.
After we spent around 20 minutes discussing why I had to wear a mask, what the mask was made of, how many I had to wear in a day, why patients were not wearing masks, we then got onto the subject of food. Where the food is made, how does it get here, who heats it up? Then it came to the other patients in the bay. She knew all of them by name and proceeded to tell me the goings on that happened during the night.
I’m clearly not going to get my proforma completed here. This is because my proforma is not important to my patient.
"What matters to you?"
During my Darzi Fellowship I had the opportunity to visit the Royal Free. Here I met an amazing physiotherapist called Karen Turner. She introduced me to asking the question ‘What matters to you?’ Simple – but so very effective and empowering for your patient to be asked this. The food, my mask and the people around her were of greatest importance to my patient at this time – not what she thought of her stay or if she wanted me to go through the intensive care unit steps booklet; these were important for me to know, these were questions that gave the Trust insight of what is important to them.
It dawned on me that we had designed our follow-up service to suit us and not involved families or the patient. I feel a quality improvement project coming on! Reasonable adjustments take planning, as clinicians we need to know about them. We need to factor them into our work. The NHS has just enough capacity to run if all patients followed the NHS pathways, if all patients grasped everything and followed all instructions, took their medications on time, turned up for their appointments – there wouldn’t be a problem. It takes me back to the clip from the BBC programme ‘Yes Minister’ of the fully functioning hospital with no patients and that services run very well without patients!
Currently systems within the NHS are designed around the building, the staff within it and the targets that are set out by NHS England and the Department of Health and Social Care.
If we started designing care and access around patient need and ask them what would make it easier – what helps? what matters to you? – what would healthcare look like?
During this time of uncertainty and change, I see exciting opportunities to take stock and see what’s working and what isn’t – and lets start involving patients at every stage.
Call to action
- What are you doing to ensure reasonable adjustments are made for people with learning disabilities where you work?
- What more needs to be done to ensure that people with learning disabilities feel part of the conversation and play an active role in their care?
- Are you a patient, carer or relative? What has your experience been like?
- Have you any experiences in designing services with patients? Perhaps you are a patient and have been a part of the process.
About the Author
Claire is an experienced nurse of over 20 years. She has worked in numerous specialities in the NHS and in different places around the world, from being a repatriation nurse to volunteering in refugee camps and striking up collaborations with nurses in the USA. Since 2011, Claire has worked as a Critical Care Outreach Sister where her desire for patient safety was ignited.