South East Coast & London Network

Parents, Carers & Families

 

This page is dedicated to Parents/Carers and Families with Diabetes that live in the SEC and London Region. 

We have parent representatives who work on your behalf to give views to all healthcare professionals within the SEC and London and nationally to improve diabetes care regionally and nationally. 

There is a dedicated Facebook page for parents and carers that lets you connect to other families and offers you support. You can share your experiences and you will find useful information and details of any events in your area. Go to:  https://www.facebook.com/groups/southeastandlondon (SEC and London Paediatric Diabetes Network Parents Group)

To find out more you can contact the parent representatives for the network:

Kate Fazekerley on email at kate@fazakerley.org

Adrienne Burton on email at adrienne@atburton.plus.com

Jenny Dias on email at jenny@miriad.co.uk

Nicola Pole on email at nicola.pole@virgin.net

Please download the Facebook Poster to display in clinics, and to forward onto people. 

2015 Poster - SEC and London FB group

 


 

Next Parents Meeting - Saturday 4th July 2015

Please come and join us for our 6th parents/carers and families meeting on the 4th July 2015 at Medway. For more information and to book a place please contact Adrienne Burton on adrienne@atburton.plus.com

Download poster for more information

 


 

Here are details of the parent representatives in the SEC & London region;


Adrienne Burton  (Vice Chair of Families with Diabetes National Network)  -   (Bexhill on Sea, East Sussex)  my daughter is Jessica aged 15 and she had her first insulin injection around 7 or 8 weeks old. She has a rare genetic condition called Congenital Hyperinsulinism and had her pancreas removed at Great Ormond Street around 4 or 5 weeks old along with many more operations around that time as well.  I started and run the www.hi-fund.org, a fund under the GOSH charity umbrella which I’m taking to the next level of a stand-alone charity in 2015 and the CHI support group.  

Jessica has been using an insulin pump with full time CGM for over 8 years now and does well on it and wants to train to become an doctor in endocrinology.  She has a Statement of Special Educational Needs but how this works for her in school has changed dramatically over the years as Jessica has grown up.  I am an integral part of the Children with Diabetes UK Advocacy Group and have organised the annual CWD holiday to the Cotswolds where we have around 200 to 300 people attending.  My work with the HI Fund has taken me to many European countries to deliver presentations to other parents and professionals.  I became a parent rep for the South East Coast and London network a few years ago and really enjoy seeing how things work behind the scenes and being a part of a huge positive change within paediatric diabetes in this country.

I am a legal secretary working for my family’s law firm for the last 27 years.  I was office manager for 12 years until Jessica was born when I had to become part time.  I am a very busy single parent.  


Jenny Dias - I am mum to Sam aged 10, Poppy who is 6, and wife to Adam.  Sam was diagnosed in May 2009 at the age of 4.  Sam is now on the Omnipod Pump and determined that having Type 1 Diabetes will not stop him doing or achieving anything he wants.

I became involved in the SEC and London Network a couple of years ago and really enjoy being a Parent Rep.  I have attended several National meetings and also meetings within the North Thames area of the Network.  It is wonderful that as parents we have a strong voice that is being listened to.

I currently work part time for my husband, who owns a property development company.  In my spare time I enjoy looking after my animals which include micro pigs, ducks, chickens, rabbits, guinea pigs and dog.   I am also an active member of the PTA at Poppy’s school.  I enjoy running and in 2011 I ran the London Marathon for JDRF, which was a wonderful experience.  I ran with my husband, my brother and Sam’s Godfather and we dressed as the Flintstone’s – I was Wilma!

Prior to having children I worked for a Management Consultants as a Resource Manager in their Project and Change Management Practice. 


Kate Fazakerley (Chair of the Families with Diabetes National Network) - (Clapham, London) Our daughter was diagnosed in 1999 at the age of two and is now 17. I became involved in advocacy when a neighbour asked me to come along to the paediatric diabetes network meeting at our local hospital a few years later and I became a parent rep for the London and the South East coast network in 2013. I am currently chair of the Families with Diabetes Network which is the network of all the regional parent reps in England. I also sit on the National Paediatric Diabetes Audit board as a parent rep and the National Paediatric Diabetes Audit Patient Recorded Experience and Outcome Measures (PREMS) committee which designed the questionnaires for families for families to feedback in clinics. I have also been involved in peer review both as a parent reviewer and also as a parent rep on the measures committee.

When I’m not a diabetes advocate, I work part time for a local building company as a Health and Safety Manager although my background is in Marketing and I worked as a Marketing Manager for years, both before and after having children. 


Nicola Pole -  (Crawley in West Sussex) I am mum to Katie who was diagnosed in June 2011, aged 10 years old and now on an accu-chek combo pump and we have funding for dexcom sensors; and also mum to Emily who is 16 and my husband is Francis. . I am a primary school teacher although I now do supply cover at the school that I previously worked at rather than teaching full time.

I made contact with JDRF shortly after Katie was diagnosed and through them met people from CWD and heard about the National networks. I am fairly new to being a parent rep but have attended several meetings within the local area and also within the Western part of our Network. I am also an active member of a local independent support group that meets on a monthly basis and aims to give parents an opportunity to meet and chat and share their thoughts and the challenges of being a parent of a child with Type 1 diabetes. I am also part of a group within Sussex who help organise events for children with Type 1 and their parents called dBeatz. When I am not being mum and wife or teaching I am also training our dog, a Labradoodle to alert to Katie’s hypo’s and hyper’s and we have had some incredible experiences where she has alerted without Katie having any awareness of how low she was. I am also involved with Girlguiding UK and run a Rainbow Guide Unit. I believe that all children should receive the best quality of care and support possible and hope that by working together with hospital teams and parents we can help to bring about gradual changes that will lead to this.

 


 

Resources for parents

 

Here are some resources that have been developed by the University College of London Hospitals, they have kindly agreed for their information to be included on these pages. 

Here is a link to some 'How to' videos that have been produced by UCLH, including 'How to insert a cannula', 'How to do an injection', How to do a Glucagon injection', as well as others. 

https://www.uclh.nhs.uk/OurServices/ServiceA-Z/CYPS/PDIAB/Pages/Howtovideoguides.aspx 

The UCLH team have also developed many information resources that are available for you to look at and read. Please go to their website https://www.uclh.nhs.uk/OurServices/ServiceA-Z/CYPS/PDIAB/Pages/Home.aspx for more information.