July 2016

Welcome to the Brainbow Newsletter

Welcome to the third edition of the Brainbow newsletter. Following the circulation of the last two monthly editions it was felt that we should now move to circulating it on a bi-monthly basis

instead. It is hoped that the newsletter will continue to be a useful and interesting source. If there is anything you would like to include in future editions, and which relates to the care of

paediatric brain tumour patients, please let us know.

We would like to say a very special thank-you to Camille’s Appeal, a co-founder of

Brainbow, as this will be their last newsletter before the closure of the charity.  Without

the contribution of Camille’s Appeal, Brain-bow would not be where it is today and cer-tainly would not be able to tell such a story

of success and wonderful contribution it has made to the lives of the patients and their

families.  We wish the Trustees of Camille’s Appeal the very best for the future.More can be read on page 8….

Issue 3

Issue 3

The summer months often bring a slightly quieter time on the wards however this year there has been an unprecedented demand across the whole of the paediatric service. There have been a lot of inpatients already known to us (either as long-term rehabs who have continued to be inpatients from a few months ago, or readmissions). Two of the patients in May and June were our long term rehab patients, and there has also been a lot of palliative care cases who have been on the ward for a number of weeks who have required regular input from the team.

Brainbow StatisticsEquipment Orders

Brainbow is delighted to have a shed! The new Brainbow shed has recently arrived which is located behind the fence of the C2 garden. The shed has been funded from part of the generous donation by the Joshua Tarrant Memorial Fund.

Previously it had not been possible to purchase larger equipment items due to a lack of storage space. A big thank you to the Joshua Tarrant Memorial Fund.

Feedback

We were delighted to receive such lovely feedback from a parent, including an amazing donation. This is a testament to everyone’s hard work across the paediatric wards:

"My brother and his friend did a sponsored 100mile bike ride through the night in respect of our son who was diag-nosed with a brain tumour in November 2015. We as a family hope that the amazing amount of money that was raised will help other families and children recover fully.

“Brainbow helped us as parents and our son to recover after successful surgery at Addenbrooke's, and we will be forever grateful to the Brainbow team alongside all other medical staff within Addenbrooke's. We have raised an amazing amount of £2900 to thank you for our son's care."

July 2016 | Page 2

www.cuh.org.uk/addenbrookes-hospital/services/brainbow

Brainbow website

Joshua’s Story

Celebrating end of treatment

Joshua is a young man who loves Lego. He was diagnosed with a brain tumour in August 2015 when he was 7 years old.

Joshua had 8 hours of surgery and then started with 3 rounds of chemotherapy. He then had to have radiotherapy each day

for 6 weeks. During this time Joshua stayed at Addenbrooke’s with his Mum or Dad. After this, Joshua had another 3 rounds

of chemotherapy, he was able to receive this at the Norfolk & Norwich nearer to home.

`

Joshua was seen by the Brainbow Occupational Therapist, Physiotherapist, Speech and Language

Therapist and Clinical Psychologist at various times. They all learnt a lot about Lego!

Joshua loved going to school when in the hospital, and he was able to go to school when he was at home as well.

Joshua’s school were really generous and raised money for the Brainbow Service, £350 from their Christmas concerts.

Throughout his treatment, Joshua was always able to raise a smile from everyone who met him and his determination

was wonderful to see. He taught his team in radiotherapy about Lego Ninjago, and tested them regularly.

`It was a very exciting day in May this year when Joshua was able to ring the end of treatment bell!

July 2016 | Page 3

Congratulations to Joshua and his family!

The way you cut a vegetable can change the way

it tastes

All of the Nutella sold in a year could

spread over more than 1000 football

fields

You share your Birthday with more

than 19 million people around the world

Did you know?

National and local news

Understanding the genetics of paediatric glioblastoma Dr Steven Pollard, University of Edinburgh ‘’Paediatric glioblastoma is a devastating brain tumour that less than 20 per cent of young patients survive. This collaborative project brings together research teams from the UK, Canada and Sweden to define the role of a recently discovered genetic mutation in paediatric glioblastoma and determine whether it represents a possible target for a new therapeutic approach. The team will also create new cellular models of the disease for on-going drug-discovery efforts.’’ Amount of grant: £357,589 Read more here: http://www.childrenwithcancer.org.uk/News/understanding-the-genetics-of-paedi-atric-glioblastoma

Current brain tumour projects “Brain and spinal cord tu-mours are the most common solid tumour to occur in chil-dren, with around 400 new cases every year in the UK.” View projects here: http://w w w . c h i l d r e n w i t h-cancer.org.uk/Pages/News/Category/current-brain-tu-mour-projects

RCGP announces Brain Tumours in Children as a clinical spotlight project “The project is designed to help primary care profes-sionals in identifying symp-toms” Read more here: http://www.rcgp.org.uk/news/2016/june/rcgp-an-nounces-brain-tumours-in-children-as-a-clinical-spot-light-project.aspx

MP visit highlights importance of brain tumour research “Rob Marris, Labour MP for Wolver-hampton South West, recently visit-ed the Cancer Research Group at the University of Wolverhampton to find out more about their research into brain tumours.” Read more here: http://www.wlv.ac.uk/about-us/news-and-events/latest-news/2016/june-2016/mp-visit-highlights-impor-tance-of-brain-tumour-research.php

July 2016 | Page 4

Posterior FOSSA SYNDROME QUIZHere are some quiz questions on Posterior Fossa Syndrome - answer them with a TRUE or a FALSE!

1 | Children with mid-line cerebellar tumours are most at risk

2 | Symptoms are most frequently seen immediately following surgery (first 24 hours)

3 | Significant speech and language difficulties are always long standing

4 | Severe Posterior Fossa Syndrome is a contra-indication for delivering chemotherapy or radiotherapy for the underlying tumour

5 | Little information is available for families of a child with Posterior Fossa Syndrome

true / false

true / false

true / false

true / false

true / false

Look out for the answers in the next issue…

July 2016 | Page 5

Brain tumours are

the largest cause

of preventable or

treatable blindness

in children

Brain tumours do

not discriminate

amongst gender,

class or ethnicity

Brain Tumour Facts

Brain tumours are currently treated by surgery, radiation therapy and chemotherapy

Meet the brainbow clinical psychology team WHO ARE THEY?

Dr Angela Kirby heads up the psychology team and has extensive experience within the realm of paediatric oncology and haematology. She was involved in the development of Brainbow and continues to work for the service part time. She endeavours to find creative ways to engage children.

Dr Angela Kirby Principal Clinical Psychologist

Dr Aafke Ninteman has gained e x p e r i e n c e i n a d u l t a n d paediatric neuropsychology. Aafke spent a number of years working in Kent and London before moving to Cambridge and start ing her job with Brainbow in autumn 2015. She is passionate about providing support for families affected by brain injury.

Dr Aafke Ninteman Senior Clinical Psychologist

K a t h y C o x j o i n e d t h e Brainbow Service as an A s s i s t a n t C l i n i c a l Psychologist in August 2014. Kathy feels privileged to learn f r o m h e r B r a i n b o w colleagues and the families she works with; she hopes to qualify as a Clinical Psychol-ogist in the future.

Kathy Cox Assistant Clinical Psychologist

WHAT DO THEY DO?

Clinical Psychologists may work with families at diagnosis, during treatment and after treatment has finished. We work with inpatients, outpatients and families. Clinical Psychologists also provide bereavement and emotional support to families.

The team specialises in a range of therapeutic approaches such as cognitive behavioural therapy and systemic therapy. We think about the needs of the young person as well as the parents/carers, siblings and the wider network (e.g. school). We might work with individuals, families or run groups. We also provide consultation and training to other professionals who work with the young person in the community.

Treatment for brain tumours can impact on the young person’s thinking, emotions and behaviour. For example, some children might have a harder time taking in information at school or making friends. In order to evaluate any treatment related effects, we follow up children after treatment with a com-prehensive assessment. We work closely with the rest of the Brainbow Service, in order to provide a full multi-disciplinary assessment and to help the young person reach their full potential at school and in their everyday activities. We also work collaboratively with the paediatric ward counsellors.

July 2016 | Page 6

WHAT ARE THEY WORKING ON AT THE MOMENT?

Alongside continuing our inpatient and outpatient work with children and their families we are always looking at how we can develop what we do.

We run support groups for children and their families. Angela and the team have run yearly groups for children and their families and we are looking to run more including a ‘Memory Group’ with the Brainbow Occupational Therapist.

Recently we have made a new “child friendly” assessment tool to help us find out more young people’s thoughts.

We have been reviewing the ways we support siblings. We have recently devised a new measure that we hope will help us identify siblings who need more support; we have just started trialling this with families.

We are also looking at continually improving our methods of cognitive assessment and have recently purchased new assessments including non-verbal cognitive assessments.

MOST COMMON QUESTIONS PEOPLE ASK US ABOUT WORKING IN PSYCHOLOGY

“Can you read my mind?”

July 2016 | Page 7

Staffing update

Welcome to Louise Heavey who started

as the Brainbow Administrative

Assistant on 18th July 2016!

Members of the Brainbow

team gave a presentation to

the wider oncology team on

complex rehab using a recent

patient as a case study. It was

well received! The presenta-

tion helped the wider team re-

flect together about joint work-

ing and ways to further help

families and young people.

Congratulations to David Young, Paediatric

Physiotherapist on securing a position to

do a Masters in Research at UEA which he is due to start in September.

Congratulations to Elisabeth Kerley, Project Coordina-tor on her recent

engagement!

Anna’s HopeTwitter: AnnasHopeUK

Facebook: AnnasHopeUK

www.annas-hope.co.uk

Tom’s TrustTwitter: toms_trust

Facebook: Toms-Trust/117701668320340

www.tomstrust.org.uk

Camille’s Appeal

Twitter: camillesappeal

www.camillesappeal.co.uk

Partnership Charities

Thank you to Camille’s Appeal: Cambridge University Hospitals (CUH) presented the trustees of Camille's Appeal with a token of recognition for the invaluable contribution as a co-founder of Brainbow as the charity prepares to close later this summer.

Alongside Anna's Hope and Tom's Trust, Camille's Appeal founded Brainbow in 2013 working with CUH to provide a rehabilitation service in the East of England for children with brain tumours.

The presentation took place at the Brainbow Management Committee Meeting on Wednesday 15 June 2016.

Dr Amos Burke, Consultant Paediatric Oncologist, said: "Brainbow has transformed the life of children and families in the East of England. Brainbow has become the byword for rehabilitation for children with brain tumours, and the establishment of this service just shows what can be done by sharing a vision.

"We want to acknowledge Camille's Appeal's invaluable partnership with Brainbow, and without everyone we would not be who we are and what we are.”

The presentation ended with the cutting of the Brainbow Cake.

CUH consultant Amos Burke with Camille’s Appeal trustees Sarah Richards and Wes Carter after the Award presentation.

The Brainbow cake.

July 2016 | Page 8

Partnership Charity events

July 2016 | Page 9