Brainbow warriors - multidisciplinary therapy for children with brain tumors

A pioneering collaboration enhances therapy for children with brain tumours. Janet Wright reports

Physio David Young. Photo: Mark Bullimore

Teamwork is part of everyday life for most physiotherapists. Now a pioneering project for children with brain tumours is taking the multidisciplinary concept an important step further.

Brainbow – named by a young patient – opened its doors in October 2013. It aims to provide NHS specialist neuro-oncology rehabilitation assessment, and some treatment, for children from around the east of England.

Based at Addenbrooke’s hospital in Cambridge, the Brainbow service includes a physio, a clinical psychologist, an occupational therapist and a speech and language therapist; there’s also input from a project co-ordinator and clinical lead consultant.

‘On the ward you’d be working with other therapists, and having meetings,’ says band 7 physio David Young, currently providing maternity-leave cover for Brainbow’s Kate Stephens. ‘But in terms of having therapists all in one room for an initial assessment, a one-stop shop, Brainbow is unique.’

The set-up allows time for the whole team to get together and formulate a coordinated plan for each patient, in consultation with the family. At the initial assessment, each therapist has a chance to assess the child while others talk to the parents or carers and answer questions.

‘With a younger child there’s more input from the parents or carers,’ says Mr Young. ‘But an older child will be very much involved in telling you how they are and how they’re progressing. We want children to tell us their goals so we can tailor the treatment towards them.’

After assessment, the Brainbow therapists coordinate therapy, linking closely with inpatient services and local teams.

When patients are admitted for surgery, or for chemotherapy or radiotherapy, members of the team may visit them every day. When they leave, the team stays in contact, monitoring their progress with the use of outcome measures.


Pioneering collaboration

Some patients may be having follow-up care 10 years after their diagnosis. And for those nearing 16, Brainbow aims to ease the transition from paediatric to adult services.

‘The aim of this unique joint assessment model is to improve the patient experience, optimise joint working across professions and help children with brain tumours reach their full potential,’ Mr Young explains.

Brainbow is the result of a pioneering collaboration between Cambridge University Hospitals NHS Foundation Trust and three charities for children with brain tumours. For the first three years, the therapists are being funded by the charities: Anna’s Hope, Camille’s Appeal and Tom’s Trust.

‘Currently, care provision for children with brain tumours is hugely varied across areas and between therapists, and many of the long-term effects of treatment are not fully understood or recognised,’ says Mr Young.

‘The aim is for this service to be sustainable in the future. We’re looking to share learning in order to improve overall services for children with brain tumours.’

Meanwhile, the whole team works together in helping young patients formulate their goals. Standardised outcome measures monitor the patients’ progress, showing where they’ve done as well as or better than they’d hoped and where they need more help.

‘We also work very closely with families, schools, hospices and other community therapists,’ says Mr Young. ‘It’s new for me, to ring a teacher and find out how a child is doing at school – not only their education but also physical education (PE) and interacting with classmates.’

Integrating activities into daily life

One teenage patient, for example, was clear about having different goals for different contexts.

At school Joanne (not her real name) wanted to concentrate on her education, so she decided to stay in her wheelchair and keep her energy for lessons. But at home, Joanne wanted to move around more freely, so Mr Young worked with her on transferring from the wheelchair and standing.

As she makes progress towards her goals, the therapists bring in new strategies to support her. Joanne’s physiotherapy is now concentrating on her mobility with a frame and enabling her to climb stairs at home.

During joint treatment sessions, the occupational therapist has been working on Joanne’s fine motor skills, using adaptive technology such as pen grippers.

The clinical psychologist looks at how fatigue is affecting her self-esteem and how she’s feeling and interacting at school. The speech and language therapist is helping Joanne with swallowing and eating as well as communication.

Mr Young’s remit includes coming up with activity ideas, tailored for patients at their current age and level of ability, and enjoyable enough for children to want to take part – throwing and catching or using the whole body.

One favourite is ‘animal walking’: moving heavily on all fours like an elephant, for example, or with arms swinging like a monkey, to work on different areas of proprioception or coordination.

‘Any activity ideas we come up with, we include parents, teachers and community therapists, so the activities can be carried out in the child’s daily life,’ says Mr Young. ‘They can also be adapted to be used in the classroom or incorporated into a sports or PE lesson, so other children can be involved in the rehab as well. We send out the activity ideas and the schools use them as they wish.’

It’s rewarding work in a pioneering field. But the downside is unavoidable: working with children who have cancer, therapists sometimes face the pain of dealing with a patient’s death. Anna’s Hope and Tom’s Trust, two of the supporting charities, were set up in memory of children who died.

‘There are those very sad cases, and we are affected by them,’ Mr Young admits. ‘It’s difficult, it’s sad. You have to make sure you’re maintaining your ability to work professionally. You’re still asking yourself “How can I have a positive effect on what’s happening?”

‘Some of the treatment is palliative. You can still be constructive as a therapist, making things more manageable for the child. Even simple strategies for parents in lifting and moving their child can help and be viewed as a success.’

And some outcomes get the whole team cheering.

Mr Young and occupational therapist Katie Johnson worked with one eight-year-old patient who had surgery in January.

‘He couldn’t stand independently,’ Mr Young recalls. ‘He had to be supported by two of us. Then he was walking with hand support of one person. Then he was walking with supervision. We were empowering mum and dad to stand back and let him go.

‘Now we’ve heard he’s riding his bike! It’s one of those occasions when you shout for joy – it’s a “YES!” moment. We were all celebrating.’

For Mr Young, that was one of many high points of a job that unites his main professional interests, honed while working abroad.

During a year in a Tanzania, he worked at a disability hospital with children who had conditions such as spina bifida, cerebral palsy and hydrocephalus. In post-earthquake Haiti, he treated children with trauma and acquired neurological disabilities.

‘I’ve always liked working with children and I’m very interested in neurology and rehabilitation,’ says Mr Young. ‘So marrying these together is a really good fit for me.’

The Brainbow model is an equally good fit, he believes, not only for his present patients but for youngsters with other needs.

‘What we’re doing is bringing key professions together, assessing and giving activity ideas. It’s a model that can be adapted to all children.’ fl

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Janet Wright

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