Month in Review: November

We started November with the task of distributing the recently printed Red Cell News to hospitals around the Network. I’ve taken trips to Lewisham, Croydon, Guy’s, the Evelina, and Wooden Spoon House, and posted the newsletter far and wide. The newsletter is published four times a year and it can take me a couple of weeks to make my way around the Network and make sure it has reached every corner of the region – it’s great to flick through when waiting for an appointment.

Network Meetings

For the most part November was a month of meetings, but thankfully successful and productive ones! Towards the end of the month the Network Leads met for a business meeting at Guy’s Hospital. Key points on the agenda for this meeting included:

  • discussing what events we’ll be holding in 2018,
  • agreeing some of the finer points of the regional MDM (for example, how many patient referrals we can discuss in one meeting),
  • looking at what audits we can undertake to monitor and improve services.

For those who are interested our Network Leads are volunteers who represent a particular area of the Network. For example, we have an audit and governance lead, a research lead, a psychology lead, and several leads representing the adult and paediatric services across the Network.

This month we also held an Education and Peer Support Meeting on the theme of stroke. We welcomed a total of 58 professionals from across the Network and Greater London to this meeting, from consultants to nurses to psychologists to students to specialist registrars and everything in between. The meeting was a great success and we had a range of speakers covering the prevention and management of stroke in sickle cell patients.

Our Guidelines Group also met this month to work on our Network-wide guidelines and patient information leaflets. One guideline has been sent to the Network for comments and will be published online as soon as it is finalised. The Group has been developing guidelines for managing strokes and these were discussed at the Education and Peer Support Meeting – we’re collating the feedback from the meeting now for the next draft.

General News

Elsewhere in the Network, Giselle, Transition CNS at King’s College Hospital, created a poster about the transition service that was displayed at the Queen’s Nursing Institute Transition of Care Conference. Giselle’s contribution was awarded third prize in the poster competition.

Things in the wider sickle cell community have also been busy this month: Dr Kofi Ani, a leading clinical psychologist for SCD (and probably one of the first!), was awarded an MBE, and an evaluation of the National Screening Programme was published online in the Archives of Disease in Childhood. You can read the article here. The Network’s own Dr Moira Dick contributed greatly to the programme and the evaluation of it.

And that’s everything for November! December is a month for planning and preparation (and celebration, naturally), so I’ll be sharing another Month in Review in the New Year. It will include plenty of dates for diaries.

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Red Cell News Issue 9 – Out Now!

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I’m pleased announce that the autumn edition of Red Cell News is now out and making it’s way to hospitals in the network region!

There’s plenty to read in this edition, from an interview with SickleKan founder Kehinde Salami, to a research update, to information about how to seek support at university, and to a look at what we’re doing to raise awareness of sickle cell and thalassaemia among healthcare professionals.

Read Red Cell News online here.

We hope you enjoy this issue and welcome any comments or feedback that you have. If you would like to contribute to the next issue please email info@ststn.co.uk.

 

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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.

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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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