Case Study

Communication difficulty is a significant problem for children with learning disabilities or autism and their families. This can become a considerable contributing factor in the presentation of challenging behaviours. It is therefore important that parents and carers are effectively supported to meet their child’s communication needs. It is estimated that 20% to 30% of people diagnosed with autism will never develop speech. It is therefore essential that alternative functional communication is developed for these children. The Pictorial Exchange Communication System (PECS) was developed in 2002. Benefits have been found to include reducing behaviours that challenge, encouraging speech and increasing social communication. PECS focusses on school and home environment but does not have pictures explaining what may happen in hospital which we know is an environment and experience
which can cause increased anxiety and difficulty for children with LD and for their families.

Alison Dean joined the Trust in September 2015 and was already thinking about how she could develop PECS into a system that could be used in a healthcare setting. In April 2016, Alison met K and his mother A. K is an 11 year old lad who has autism, ADHD, global development delay and PVL. K was non-verbal up until the age of 7,
he has echoalia and repeats what he has heard as a form of communication, but does not always understand the meaning.

Because of his diagnosis, he has to attend a number of healthcare settings and mum was clearly having lots of difficulty supporting K in these environments. K would become very distressed and noncompliant and simple procedures became a battleground which left K, A and the healthcare professionals very distressed and upset. When Alison met K and A she could see that finding an alternative way of
communicating with K could have significant benefits for him. Alison showed him a picture of a doctor feeling a tummy prior to an ultrasound scan and noticed this instantly relieved his anxiety and the procedure was successful. Alison wanted to develop flashcards that could be used to communicate with K when he accessed BHRUT for care. In addition, the Voice of the Child audits undertaken in the Trust showed the need for a total communication approach, as many children benefited from the use of pictures to help explain their care, including blood test and radiology. Alison knew that if she could develop a system that worked for K and A, then it could be extended across children’s services throughout the Trust.

Alison began working on a healthcare version of the PECS. She had already identified from nursing and medical colleagues some basic or more frequent things they did with patients or asked patients to comply with – for example, I need to examine your tummy, I need to look in your ears. Images were selected which were child-friendly but would accurately portray the most common requests of the medical professional or patient. The images and requests were shown to a number of patients and families to see if they were beneficial and relevant and feedback was very positive. Alison also consulted with nursing and medical colleagues to ensure the balance between patient need and professional need was addressed. The prototype pack was developed into small 80mmx80mm cards, with a pack of 22 ‘wants’. Alison took the prototype to a number of Trust groups and committees to engage widely with colleagues. Tweaks to the prototype pack were made and the final version was approved by January 2017. An external company were commissioned to produce the packs and the Trust order 50 packs of 22 flashcards (‘wants’) at a cost of £250. This project was funded by the hospital charity who felt that the impact on children with learning disabilities and their families would be significant and therefore something that they wanted to support.

Once approved the first pack produced was given to A to use with K. At the same time K needed to attend the hospital because of a physical health concern with his tummy. The doctor used the flashcards showing a picture of a doctor feeling the tummy to K whilst also telling him what was going to happen. K then gave implied consent to have the examination. The examination went smoothly and was with much reduced difficulty than previous attempts at examination had been. This method was
expanded to all aspects of K’s medical care and he quickly became aware of what each card meant was going to happen. The visual cards alongside the verbal instruction or request has had a significant impact on K’s experience. He no longer becomes distressed because he knows what is going to happen. He complies with requests or instructions – and just by showing him the appropriate card, can prepare himself for what is going to happen. He can finally have a full examination without himself, his mother or the staff becoming distressed and upset. This has meant that his physical health problems could be addressed appropriately. K now follows a routine which all medical professionals involved in his care have adopted. His anxieties are now lessened as he understands what is about to happen. This in turn has had a positive impact on his family and home life. A has embraced the cards
so much that she worked with all health professionals involved in K’s care so that wherever he accesses care he has the same experience. She has been successful in using these with K’s GP and his clinical team at Great Ormond Street Hospital. Within BHRUT, Alison quickly identified that the same cards could be used for many children. 50 packs were purchased and in order to make them accessible to
the widest number of children, they were distributed across the paediatric services including the inpatient wards, the outpatient areas, the Emergency Departments and Theatres. This means that wherever a child with learning disabilities accesses care at BHRUT, our staff have alternative ways of communicating with the child that will help reduce anxiety and distress. The cards are now routinely used across a number of areas where children access care and treatment. In addition, some families
have requested their own packs. Currently we do not have enough packs to provide one per family but Alison has provided a slide pack directly to families that can be printed and used. Across our 3 feeder boroughs we have approximately 1000 children attending Special Educational Needs schools. All of these children have the potential to require care and treatment from our hospitals. In addition, there are a significant amount of children with learning disabilities who attend mainstream schools and many of these children will access our outpatient services on a regular basis. There is significant potential for this project to impact positively on the lives and experiences of our patients and their families.

Relative quotes: “Thank you so much Alison you helped so much yesterday and turned a negative into a positive for Jude. Thank god for people like you these pictures are great help also thanks so much again.” – DL mother of Jude

“K and his family would like to thank you for making his visit to the dentist less stressful with the help of pictures. The Dentist was very impressed with the pictures and followed exactly how the pictures were illustrated.” A

“My child thinks picture cards are a great way to help him understand what they are saying” Anonymous feedback from Voice of the Child audit.

Staff quotes:
“The flashcards have been fantastic to work with especially to prepare the children for a procedures and I have noticed the parents have been more relaxed knowing their child is aware of what is going to happen next.” Lucy – playworker

“I have used the cards and it helps greatly in communication with children who have LD. Their faces lit up and the rapport improves. Very good ‘invention. ” Consultant Paediatrician

The availability of the cards is included as part of mandatory learning disability training for staff so there is continued promotion of this option. The compliance and use of these cards is monitored through the bi-annual Voice of the Child audit, which seeks to find out what tools are used in order to communicate effectively. Following the success of this project the Trust is now exploring how this can be expanded to support adult patients who may have an additional need for example those who are
deaf, whose first language is not English, who have had a stroke or have a dementia diagnosis.

The concept of the flash cards is simple but the impact significant. The flashcards in their current form for children are already being used by parents in other healthcare settings e. g. GP, dentist, other hospitals. We are exploring how the cards could be developed for use by adult patients who have additional communication needs for example deaf, English as a second language, dementia, stroke patients. The concept and format would be very easily transferable to other NHS Trusts – acute, mental health and primary care and could be used on a small, individual scale (e. g. GP practice) or Trust-wide.

The underlying principle of this initiative is the simplicity. The brain processes images 60,000 times faster than text and images are used in so many different ways in everyday life including the use of emojis, memes, gifs, etc. The Special Educational Needs schools focus their learning on pictorial communication tools, yet this is not replicated within the hospital, where anxieties may be far higher, especially if someone is out of routine. There are communication and easy-read materials available but these are often inaccessible to staff at the time they need them. However, practitioners should be able to carry these small cards with them and have them to hand when required to use pictures to help communication. The cards use photos rather than widget symbols which may be misinterpreted.

This card pack fills a previous gap in the market as although PECS are widely used in education there were no PECS packs available which help explain what might happen during a hospital admission, including examination, observation and medication. The way in which the pack has been developed also allows the patient to express some of their wants, for example, toilet, play, home, yes or no, brightness and noise.

The key learning from this initiative is to engage with the people you are aiming the project at. It was essential to ensure that patients and their families were happy with the card content and format however, there was an important piece of work undertaken in engaging the staff who would use the cards with patients. By including staff groups from the outset, people were engaged and could see the benefits –this in turn led to onward promotion of the project across staff groups and when the packs were given out to areas, there was an anticipation already: people were asking when will we get ours!