New App for Children & Families Affected by Sickle Cell

Roald Dahl’s Marvellous Children’s Charity have just released a new app designed for children and families affected by sickle cell disease. The app, ‘Little George and the Dragon’, is a creative way of explaining sickle cell to children aged five to ten in a gentle and accessible manner. Families visit Waggle Avenue and follow Little George as he learns how to manage his pain with help from his Mum and his friend Dragon.

Screen Shot 2017-10-12 at 09.22.55

Credit: Roald Dahl’s Marvellous Children’s Charity

Accompanying the app is a book and together they form part of a comprehensive educational package for children and families. Education is a vital element of managing sickle cell and the project was launched to address the lack of available resources.

The app and accompanying book was inspired by children at Alder Hey Children’s Hospital and funded in conjunction with The Burdett Trust for Nursing, Alder Hey Children’s Hospital and multi-media charity Twin Vision.

Roald Dahl’s Marvellous Children’s Charity have already found that Little George and the Dragon has been beneficial for many families. The interactive nature of the resources in particular has proven to be an effective way of accessing and understanding sometimes difficult information.

Giselle Padmore-Payne, Roald Dahl Transition CNS at King’s College Hospital, had this to say about the app:

‘Today’s society revolves around technology; the ‘Little George and the Dragon’ app is a fantastic approach to engage children and their families in a captivating and interesting way, enabling them to learn about sickle cell disease and how to apply some preventative treatments and methods. This app assists them with day to day living using a realistic and holistic approach. As part of the Roald Dahl Marvellous Children’s Charity network  of nurses, I am extremely proud that my colleagues at Alder Hey Children’s hospital have created such as an innovative, useful  and easy to use app. The app can be downloaded from App store or via Samsung. Well done Team !!!!!’

To download the app, search ‘Little George App’ and email: enquiries@roalddahlcharity.org to find out how you can get a copy of the book. You can find out more about Roald Dahl’s Marvellous Children’s Charity and the work they do on their website.

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‘Education’ Workshop

Education Workshop 4.11.17

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Book online via eventbrite.

 

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Patient Events at King’s College Hospital

This summer the sickle team at King’s organised two events for patients. In July we held a patient forum, to which we invited all sickle cell and thalassaemia patients at King’s, and in August we held a transition workshop for patients aged 14-18 who are either approaching transition or going through the process.

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On a Friday evening in July approximately thirty patients gathered in the Boardroom in the Hambleden Wing to take part in our forum. The hot topics for discussion included stem cell transplants, psychology, hydroxycarbamide, and managing pain among others.

Gary Bridges, adult psychologist, introduced the new adult psychology service at King’s and Dr Victoria Potter gave a talk on stem cell transplants. Transplants for adult sickle cell patients is a very exciting topic at the moment and those in attendance had lots of questions for Dr Potter.

We held the transition workshop on a somewhat grey Saturday in early August and welcomed a number of teenage patients and their parents. We had an interactive programme planned for the day that included a talk from psychologist Gary Bridges and Consultant Haematologist Sara Stuart-Smith, as well as a tour of the adult wards, A&E and outpatient unit.

transitionworkshop3At the transition workshop with KCH transition nurse, Giselle Padmore-Payne.

For part of the afternoon we asked patients to design their own goodbye cards that the paediatric team could give to patients when they transition to the adult service. We awarded prizes for the designs (with the prizes kindly donated by SickleKan and Roald Dahl’s Marvellous Children’s Charity), and hope to get them printed to use in the future. Take a look at the wonderfully artistic designs:

transitionworkshop5Goodbye card designs

The focus of both events was encouraging patient and their families to provide feedback on the service at King’s. Feedback is so important in helping us shape the services we offer and make improvement that have a positive impact on the people who actually use those services. Some common themes came up across both events, including: experiences in A&E, improving education/training for nurses and doctors, raising awareness of sickle cell disease, improving the ambulance service (read more about a recent update here), tailoring support and services to individual needs, and education for siblings, family and friends. Many of the teenagers at our transition workshop also suggested the idea of mentors – people with sickle cell who can support and mentor other patients.

The team at King’s plan to hold a patient forum twice a year and continue with regular transition workshops in the future. Feedback from the patients, parents and carers who use our service is vital to making worthwhile changes and improving the experiences had within this hospital and the network as a whole.

Thank you to everyone who attended these events and to the sickle team at King’s for facilitating them! A huge thank you also to Roald Dahl’s Marvellous Children’s Charity and SickleKan for supporting the transition workshop and providing prizes and goodies.

If you are a patient at King’s and would like to find out when our next forum will be, please ask your nurse or get in touch with Eleanor (info@ststn.co.uk). 

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Get Involved with the Quiet Voice Arts Project

Arts Project flyer-image001QUIET VOICE ARTS PROJECT – BAD BLOOD IN PARTNERSHIP WITH THE SICKLE CELL SOCIETY

What is it about?

A sound track is being produced for a short multi-media dance performance which explores the complex relationship that Afro-Caribbean people have living with Sickle Cell Disorder.

The film and performance will be screened on Wednesday 27th September 2017 with other artists performing and a presentation by the Sickle Cell Society. Ticket sales from the event will be donated to The Sickle Cell Society.

This performance will be filmed and screened as part of a major exhibition running from 12th October to 1st November at the Science Gallery London.

The project is being produced by Stephen Rudder of Quiet Voice who has Sickle Cell Trait.

How many people do you need and what age?

We are looking for 10 people from Caribbean Heritage living with Sickle Cell Disorder to participate in this exciting arts project.

We need people from Caribbean Heritage living with sickle cell Disorder of all ages: predominantly young people over 15 years old as well as adults and elders.

We also need 1 person between the age of 18-25 years to attend four sessions for the research and development stage.

Ideally we are looking for people living in London and especially those in the London Borough of Southwark.

What will I have to do?

You will attend a relaxed and informal interview session where you will express your perspective on certain aspects of living with Sickle Cell Disorder.

Where and when will it take place?

Individual interview sessions will take place between these dates: Thursday 17th August 2017 to Thursday 24th August 2017 at our South London office at Longfield Hall, 50 Knatchbull Road, London, SE5 9QY.

Interviews will take between 30 – 45 minutes. Travel will be reimbursed and you will receive an £10 Amazon gift voucher for your time.

I am interested to find out more, what do I have to do?

Please contact Stephen Rudder at Quiet Voice by email stephen.r@quietvoice.co or by mobile 07973 424 947.

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