The Brainbow Service

What is Brainbow?

Brainbow is the UK’s first rehabilitation service for children with brain tumours embedded in standard NHS care. Launched in 2013, Brainbow began as a unique partnership between local independent charities – Anna’s Hope, Camille’s Appeal, Tom’s Trust and more recently Joshua Tarrant Trust – working with Addenbrooke’s Hospital to fund and provide a pioneering rehabilitation service for all children with brain tumours in the East of England. Brainbow is now fully funded by the NHS from April 2023.

The Brainbow Service is part of the Paediatric Haematology and Oncology team at Addenbrooke’s Hospital and works closely with current staff and teams on the wards as well as local teams across the region.

Background

Currently, access to rehabilitation for children with brain tumours varies across the region and the approaches to rehabilitation are inconsistent across the UK. Brainbow has been set up to help improve access to a more standardised and coordinated rehabilitation approach that can be tailored for all childhood brain tumour patients across the region. It is hoped that the Brainbow Service will contribute towards research on improving the future planning and provision of specialist care for children who have been treated for brain tumours.

Meet the Brainbow Service

The team is made up of a consultant paediatric oncologist as the clinical lead, a service delivery manager, specialist teacher, and administrative assistant; two speech and language therapists, a speech and language therapy assistant, a physiotherapist, and an occupational therapist ; and two clinical psychologists, and an assistant psychologist.

Occupational Therapy (OT)

We aim to help children and young people participate in everyday life activities. We help problem solve around difficulties that may arise during activities of daily living (self-care, learning, school or play), enabling greater independence and promoting safety.

Physiotherapy (Physio)

We help children and young people to regain function and independence following their surgery or treatment. We are able to provide rehabilitation to help your child overcome any weakness or difficulty with balance or coordination that may have been caused by their brain tumour or treatment.

Speech and Language Therapy (SLT & SLTA)

We support children and young people with any speech, language and communication difficulties following treatment or surgery. We aim to build on communication strengths but can help in providing alternative forms of communication when spoken language is difficult. We also work with children and young people who have difficulty with eating, drinking and swallowing. Our aim is to help eating and drinking remain safe and pleasurable.

Clinical Psychology (CP & Assistant Psychologist)

We help children, young people and their families to cope emotionally with what has happened to them, from the point of diagnosis throughout treatment and later as the children return to their schools and lives.

We also undertake neuropsychological assessments to help to plan any future educational needs and help families understand any cognitive difficulties that may result from the tumour, surgery or treatment and consequently design and implement a rehabilitation plan to meet the children’s needs.

Service Delivery Manager

The Service Delivery Manager supports the overall development and management of the service and clinical team.

Specialist Teacher

The role of the teacher is to support pupils who may require additional input whether this be emotional support in relation to school setting, necessary SEND support for a smooth transition throughout rehabilitation phase and returning to school. The teacher actively supports the Brainbow service in outcome measurement from an education perspective, focusing particularly on attendance, access and participation.

Administrative Assistant

The administrator delivers and maintains a professional administration/clerical service to Brainbow and all its patients, relatives and staff. They have a key focus on scheduling appointments, sending out reports and liaising with other local teams on behalf of the therapists.

What will this mean for my child?

We aim to meet every child and family soon after their initial admission to Addenbrooke’s for investigation for a suspected brain tumour. The Brainbow Service will coordinate assessments by members of the team in order to obtain a baseline of their current abilities.

We will then see your child again following any surgery they may undergo and will work very closely with the therapy teams based on the wards to guide and assist with any rehabilitation your child may need. With your permission we will also liaise closely with therapy teams in your local area, keeping them up to date with your child’s progress through any rehabilitation they may require and providing advice and education at all stages through your child’s recovery.

The Brainbow Service aims to ensure clear communication between all the different professionals involved in your child’s care, coordinating the transition process between the hospital and teams closer to home who may continue offering support once your child goes home.

Your child will remain under the named Consultant who has been providing their medical care.

Will the Brainbow service support children who may have already finished their treatment?

The Brainbow Service aims to review all the children who have been treated for a brain tumour and remain under the care of the Paediatric Oncology team at Addenbrooke’s Hospital. Children and their families will be invited to attend clinics held at the Child Development Centre on the hospital site. Assessments may be carried out by the service to help identify the clinical needs of each child. If clinically appropriate, children may be offered further support from the service or we will liaise directly with local teams to ensure that any necessary support can be delivered closer to home. It is recognised that not all community or local services will have the necessary resources to cater for all of the rehabilitation needs identified by the Brainbow Service. In these situations, further discussions with local services will be needed.

If rehabilitation needs are highlighted during any outpatient or community follow up appointments, children will be referred directly to the Brainbow Service. The service will make contact with the family as soon as possible to establish the level of clinical need. The Brainbow service may not be in a position to provide input immediately but each case will be prioritised as clinically appropriate.

Are all children able to access the Brainbow service, regardless of age?

The Brainbow Service is currently for children both previously and newly diagnosed with a brain tumour, under the age of 16 in the East of England. Should a child be approaching the age of 16 and be under the care of the Paediatric Oncology Team, the Brainbow Service will contribute towards a coordinated transition to the adult services by ensuring that any ongoing needs are highlighted and shared with the appropriate adult services.

Contacts/Further information

If you have any further queries or concerns about your child’s needs, please do not hesitate to contact the Brainbow Service on 01223 596163. Messages can be left on our answer machine and a member of the team will respond to your call as soon as possible. Alternatively, you can also ask your Clinical Nurse Specialist or Doctor to contact us if you feel that your child would benefit from our help.

There is also a dedicated email address:

• E-mail - CUH Brainbow (opens in a new tab)