Feeling pain & valuing people

I’ve been catching up on George Julian’s tweets on the inquest into Rachel Johnstone’s sad and avoidable death. Rachel was a 49 year old lady who died in November 2018 after having all of her teeth removed, Rachel was described by her family as a lovely girl who loved her life, music and dancing. She lived in a residential service, staffed by nurses and had been experiencing pain in her mouth preventing her from eating. Her mum was anxious about her having so many teeth removed in one go and the decision was made to do so while she was under general anaesthetic. Post procedure there is some contradiction and little evidence as to the information provided, her carers say they were given some paperwork and no advice on how to care for Rachel after having 19 teeth (and fragments removed) under a general anaesthetic. At the inquest it was recognised that registered nurses where Rachel lived failed to carry out appropriate physiological observations post-surgery and did not escalate concerns about her presentation to get the emergency response she needed. She died of cerebral hypoxia, aspirational pneumonia and as a result of neglect.

Last week I had toothache.  Anyone who has seen me or spoken to me has known about it.  I’ve been in pain, holding my face, distracted during conversation, uncomfortable while eating, drinking, talking and sleeping.  I managed to get into my dentist where she made an assessment of my pain and held a discussion about the best way to save my tooth and resolve my problem.  My dentist started a root canal, removed part of an old broken root and gave me a care sheet which I have followed, rinsing with salt water, four hourly pain relief and generally taking it easy on my new temporary filling, I need a further two appointments to resolve this issue. 

Communicating pain

My personal experience and the failings of care for Rachel Johnstone have made me think about the people I have worked with and cared for over the years with a learning disability.  People who have often been reliant on others to recognise changes in their behaviour that might indicate they are in pain.  I thought about a young person who’s carer told me about them approaching holding a knife and tapping the side of their face.  When the carer looked, the young persons face was hot, swollen and towards the back of their mouth was a large, visible abscess.  Undoubtedly this young person was in pain and needed to communicate that in a way that those around them could understand.  Without the verbal language to describe pain and with cognitive challenges that might mean pain feels different, is difficult to localise or understand, a person with a learning disability could be experiencing pain without others knowing. 

I’ve heard lots of stories in my career of people who have experienced pain and not been able to communicate this. Sometimes people with learning disabilities live for a long time with conditions or injuries that could be causing pain, it is thought that those who are reliant on wheelchairs are often living with chronic pain. There are also things that may be detected in health checks or investigations of other things e.g. perforated ear drums or detached retinas due to self-injurious behaviour, dental carries or foreign bodies inserted or ingested. I know of people who have broken a bone in their foot or leg and continued to walk on it, the injury later being detected by swelling, redness and changes in their behaviour. A recent question on twitter highlighted many of these experiences, parents and people with learning disabilities and or autism reflecting on situations where pain was detected or discovered.

The danger of myths and misconceptions

There is an unfortunate misconception that people with learning disabilities do not feel pain in the same ways as others. I’ve heard this said, out loud, by people who should really know better.

This myth is damaging to how we care for and support people with learning disabilities, how we work with and respond to their loved ones and carers and how health inequalities can continue to be reinforced, leading to avoidable and premature deaths of people with learning disabilities. To say something like ‘they don’t feel pain’ gives out messages about how people with learning disabilities can continue to be viewed in society, a dehumanising assumption being made, reinforcing the status of ‘other’. A significant contribution to this belief is due to the paucity of research in this area for people with learning disabilities, who may be excluded from trials and the development of the evidence base due to a variety of reasons. There is a lack of understanding of pain for people with learning disabilities because they are under represented in the evidence base and their experiences are not captured, their voices not heard.

The difficulties with communication and exhibition of behaviour which to others is unusual or difficult to understand can mean diagnostic overshadowing happens, the persons presentation is attributed to the fact they have a learning disability or have in the past, displayed behaviour described as challenging.  Increasingly though, there is exposure of poor quality care and treatment of people with learning disabilities who are not afforded the fundamental assessments of their needs.  Nursing observations and monitoring of signs and symptoms of deterioration and change are essential in promoting positive outcomes for people with learning disabilities.

Recognising when someone is in pain

It is really important that we look out for pain, that those supporting the person consider the possibility and at a basic level recognise events which may contribute to pain e.g. post self-injury or post seizure- does the person have a headache? During the menstrual cycle, not just on the days of a period, but the days leading up to and mid cycle events that could also be painful. Post-operatively or post-dental treatment, it is so important that people are not treated as if they can cope with a lot of pain, this is inhumane and could contribute to ongoing problems and distress, damage to relationships and trust in being cared for.    Evidence indicates that people with learning disabilities are likely to experience pain, either chronic or acute, to the same level we would expect in the general population and more recent research from Doody and Bailey (2017) indicated that people with learning disabilities are more likely to experience frequent and severe pain than others.

When in pain people with learning disabilities:

  • Might find this difficult to describe or describe it in ways that are difficult for others to recognise
  • May be hypo or hyper sensitive to the experience
  • May communicate pain by changes in their behaviour
  • Might vocalise in different ways, louder or quieter, change in frequency or tone
  • When in pain, may withdraw and be less motivated to engage in activities or regular routines
  • May not be as motivated to eat or drink or do other things they usually enjoy or engage in
  • Sleep patterns might change or they may seem restless

It is important to remember that pain is a unique experience for everyone and some people with learning disabilities may indicate pain in other ways.

Whenever there is a change in a person’s behaviour we should always seek to rule out an underlying health condition, this can be incorporated into a full functional assessment to help understand the behavioural presentation and inform future planning for the persons needs.  Involving parents and carers in the process is essential to having a complete picture.  There have been situations where people have been described as exhibiting pain related behaviour ‘for attention’ it is important that a statement like this is evidence based and not a not judgement. 

We must make sure that people do not suffer pain, unnecessarily, because of others judgements about how the person might communicate or be experiencing pain. 

Using a pain profile or assessment can be helpful to support those who don’t know a person with learning disabilities well to understand what a person looks and sounds like when they are in pain as well as how they might behave. The DisDat is a good example of capturing a baseline understanding of when someone is not in pain to be able to measure a change against. Some pain pictures are described in Moulster (2020) highlighting the importance of nursing observations and making an evidence based assessment and description of pain related presentation.

We have the resources, the accessible information, the tools that are designed specifically to meet the needs of people with learning disabilities but something keeps going wrong. Are the lives of people with learning disabilities not valued in the same way as others? Rachel Johnstone deserved recognition of her value as a human being with unique needs and vulnerabilities, she required a specific level of support, nursing assessment and intervention and she was failed.


Barney, C.C., Anderson, R. D., Defrin, R., Genik, L.M., Mcguire, B.E., & Symons. F.J. (2020) Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain reports [online]:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7302581/

Doody, O., Bailey, M.E. (2017) Pain and pain assessment in people with intellectual disability: issues and challenges in practice. British Journal of Learning Disabilities. 45:3, 157-165

Moulster G (2020) Identifying pain in people who have complex communication needs. Nursing Times [online]; 116: 2, 19-22. 200122-Identifying-pain-in-people-who-have-complex-communication-needs.pdf

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