Something afoot at Birmingham Children’s Hospital

Liz Johnson

Through my involvement with Sound It Out – the Birmingham-based community music organisation - I fixed up a series of Soundbeam sessions at Birmingham Children’s Hospital (BCH). Before these initial sessions took place I had no clue as to what effect Soundbeam would have on the children taking part; as it turned out the effect was immediate and striking. Straightaway it was apparent that Soundbeam allowed these seriously ill children to be creative, interact with others, and make decisions in ways that were not always otherwise available to them.

The project was planned with Janet Hetherington, Arts Co-ordinator at Birmingham Children’s Hospital, who suggested we work with the team of Play Specialists who work closely with all the children, and have a detailed knowledge of each child, with their different levels of boredom, frustration, immobility and pain. Sometimes we worked at the bedside with individuals or family groups, sometimes in a separate playroom and sometimes taking over the middle of the whole ward with everyone joining in. At the end of each session the Play Specialists would feed back to us, comparing the children’s responses to Soundbeam with their normal response to other arts activities.

We deliberately targeted the poorliest children as we had already found that Soundbeam could “reach those parts” that other arts cannot; in other words, Soundbeam can elicit a response from children whose energy levels are too low to be able to interact in other creative activities. Soundbeam worked extremely well in situations where a child did not have the strength to hold something in their hand - a brush, or puppet for example - or have the energy to talk.

We identified several areas of significant impact. These include:

• opportunities for parental involvement
• pain relief
• distraction/relief of boredom
• positivity
• challenging preconceptions of staff.

Christopher, a seven-year old awaiting heart transplant, used his hand in the beam for a short while before becoming too fatigued to continue, obviously frustrated with himself as he wanted to play more but was unable to. He was wearing a pulse monitor on his big toe with a red light that was shining through the sheet, so I suggested he could wiggle his toes in the beam. To his delight this worked, and he was able to play and explore sounds more effectively with his toes; as they were supported on the bed it was far less tiring for him.

Toes were also the way in for Mohammed (see photo at top of page), a 13-year old on the Oncology ward during his first chemotherapy treatment. When we first saw Mohammed he was lying rigid on the bed, looking scared and obviously finding the situation very difficult. His parents were also looking shocked and worried, despite the attention of the Play Specialist who was trying to help them all settle in. When I told Mohammed he could make music with his toes using Soundbeam he looked suitably impressed and tentatively wiggled his right foot. Within ten minutes he was vigorously waving and seemingly engrossed in the soundworld he was creating.

Within 15 minutes he had both beams, four switches and an array of drums and other small percussion spread over the bed, inventing patterns and exploring different combinations of sounds. The response from his parents was heartfelt, they were relieved to see their son happy, distracted from his nausea and involved in something positive.

Another patient on the Oncology ward had her Mum and Granny with her. Jennifer, a bright and personable 15-year old, is a long-term patient undergoing chemotherapy and under threat of losing her right leg. She was keen to explore Soundbeam as she had seen it on a Central TV News slot and (after some gentle encouragement from me) her Mum joined Jennifer in a duet on two beams. One of the ward staff was very struck by this sight – and sound; mother and daughter had never been seen to smile together until this session. Usually weighed down by the stress of their circumstances, using Soundbeam now gave them an opportunity to interact, respond and to enjoy each other in a very positive way.

It seems that Soundbeam has potential as a powerful tool for pain relief, as demonstrated on the Liver ward where patients are often in severe pain. A large gathering of eight patients aged 3 to 17 years took over the central area of the ward for one session. These children tend to lead quite isolated lives with little chance to interact with other children due to their illness, so this was a good opportunity to play some fun music games such as Follow the Leader with different children leading when to start and stop, get faster or slower. Also two of the older girls played a duet, with a beam each, while the younger children used the switches as accompaniment. One of these girls, Tess, (12 years old) had chronic severe pain from gallstones. In this session she was in a wheelchair and out of bed for the first time in three days, with very stiff joints. The Play Leader on the ward used the beam on different parts of Tess’s body to encourage her to move gently, starting with her head, shoulders and arms, then moving onto her legs and feet. Throughout the whole session she did not need to press her PCA morphine button, which impressed the Play Leader as very unusual for such an extended period of time.

The preconceptions of other staff were sometimes shifted with Soundbeam. Lydia, a 9-year old with brain cancer was described as “difficult to handle” and volatile. Despite this warning we took her on, and allowed Lydia to explore beams, switches and small percussion in the play room. Sometimes other children were participating and sometimes she was on her own with us, but for the whole 90-minute session Lydia was inventive, creative, responsive, positive and delightful to work with.

A different example of challenging perceptions involves a 13-year old on the Oncology ward at the end of her chemotherapy treatment. She “never wants to take part” in any activity, preferring to be left alone, according to the Ward staff. Ignoring this comment, I went over to her and asked her to tell me her name – from the look she gave me it was as if I’d asked her to climb Mount Everest. Names abandoned, I gave her a sensor and some switches and showed her how to play – she seemed intrigued. I watched with increasing delight as she became more adventurous with the sensors. She soon discovered that with the sensor in her hand she could use her legs, her elbows, and her beautifully bald head to activate the beam. A real sense of cheeky fun came through, and her written comment at the end of the session was “Enjoyed all of it. Lightened my day.”

So where next? Several exciting possibilities are being planned at the moment. A detailed research project with research staff at the University of Central England (UCE) Faculty of Health would monitor levels of pain, communication and levels of well-being (quality of life being one of the new buzz-words in Health). Much research has been done on using Soundbeam with physically or mentally handicapped individuals but there is as yet little or no acknowledged research into its potential in a hospital setting, both with children and with adults.

Janet Hetherington made the following comments at the end of these first sessions, endorsing the huge impression Soundbeam made on patients, parents and staff on the wards:

“This was the first time a Soundbeam had entered these spaces, and the results were astounding...It was clear from user and staff feedback that the Soundbeam had a huge impact on the lives of the participants. Families requested for the Soundbeam to revisit the wards, and commented on how relaxed and happy using the Soundbeam made the patient...Staff commented that they noticed an increase in mobility and communication from patients who prior to using the Soundbeam had difficulties. In one ward where a large number of patients were awaiting transplant, staff said the Soundbeam session was the most effective tool in relaxing and distracting the patients.”

At BCH the impact of Soundbeam has had a lasting effect. The Neurology ward has purchased a Soundbeam which is being used by the Play Leaders on a daily basis with their patients, and other wards are also considering buying the equipment. Hopefully once fully documented research is in place, Soundbeam will be considered an essential resource for hospitals, enabling even the very ill to escape pain and have the chance to interact and be creative, in ways that lift the spirits of everyone involved.