Kate Fazakerley is Chair of the Families with Diabetes National Network since September 2014. Kate will also be joined with her daughter Isobel.
Isobel, was diagnosed with type 1 in 1999 when she was two and is now 18. With years of experience of raising a child with diabetes from toddler to teen with all the intervening ages and stages, Kate, Isobel and their family have navigated the highs and lows of starting school, play-dates, school trips, exams and parties and have learned together how to tackle the challenges of growing up with the added challenges of type 1 diabetes.
Kate has also worked as a parent representative for nearly ten years, initially for the local hospital where Isobel received her care and more recently for the London and the South East region and at a national level.
Isobel, was diagnosed with type 1 in 1999 when she was two and is now 18. With years of experience of raising a child with diabetes from toddler to teen with all the intervening ages and stages, Kate, Isobel and their family have navigated the highs and lows of starting school, play-dates, school trips, exams and parties and have learned together how to tackle the challenges of growing up with the added challenges of type 1 diabetes.
Kate has also worked as a parent representative for nearly ten years, initially for the local hospital where Isobel received her care and more recently for the London and the South East region and at a national level.
She is currently chair of the Families with Diabetes National Network, a network of all regional parent representatives in England who go to meetings with the clinicians in their region. They represent the views of families which they seek through a combination of Facebook groups, online surveys, liaising with local support groups, parent meetings and through the clinics themselves.
Kate writes; "When Isobel was diagnosed, we were fortunate to have a very good specialist nurse but the consultant was a general paediatrician with limited experience of diabetes. At that time paediatric diabetes teams were generally under resourced and the prevailing norm was care that kept the children more or less out of hospital but did not aim for or expect particularly good outcomes in terms of HbA1c. The average at that hospital was around 9.5% or 80 mmol/ml.
I had heard about insulin pumps but met with a complete blank with our consultant so I attended a Diabetes UK meeting on ‘How to Influence the NHS’ and met up with another Mum, Nicola, whose son attended the same hospital and she introduced me to the idea of paediatric diabetes networks.
At that time our local hospital paediatric diabetes team would meet up every couple of months with another local hospital team to share ideas and discuss ways of working together. Nicola had proposed that a parent should also attend these meetings as a user representative so she and I went together and continued to do so for several years. As a result of our work with this group, a new consultant was hired, another specialist nurse, a psychologist and a dietician. The new consultant pushed for the introduction of a pump service and was eventually able to provide one. Isobel was the first child to go on a pump at that hospital.
In 2009, the NHS set up larger networks of paediatric diabetes teams in each region of England and the small network meetings that I had attended became part of the London and the South East Coast regional network – a network of 46 hospital paediatric diabetes teams all meeting together to share best practice. As a result of this work, a tariff was introduced to pay teams for meeting certain standards of care and a system of peer review was introduced to check that teams were properly organised. Each regional network had a clinical lead and a network co-ordinator and these leaders would also meet twice a year.
For this reason, it was decided to set up a parallel Families network and Jacqui Double was invited to chair it with me as Vice Chair."
Kate writes; "When Isobel was diagnosed, we were fortunate to have a very good specialist nurse but the consultant was a general paediatrician with limited experience of diabetes. At that time paediatric diabetes teams were generally under resourced and the prevailing norm was care that kept the children more or less out of hospital but did not aim for or expect particularly good outcomes in terms of HbA1c. The average at that hospital was around 9.5% or 80 mmol/ml.
I had heard about insulin pumps but met with a complete blank with our consultant so I attended a Diabetes UK meeting on ‘How to Influence the NHS’ and met up with another Mum, Nicola, whose son attended the same hospital and she introduced me to the idea of paediatric diabetes networks.
At that time our local hospital paediatric diabetes team would meet up every couple of months with another local hospital team to share ideas and discuss ways of working together. Nicola had proposed that a parent should also attend these meetings as a user representative so she and I went together and continued to do so for several years. As a result of our work with this group, a new consultant was hired, another specialist nurse, a psychologist and a dietician. The new consultant pushed for the introduction of a pump service and was eventually able to provide one. Isobel was the first child to go on a pump at that hospital.
In 2009, the NHS set up larger networks of paediatric diabetes teams in each region of England and the small network meetings that I had attended became part of the London and the South East Coast regional network – a network of 46 hospital paediatric diabetes teams all meeting together to share best practice. As a result of this work, a tariff was introduced to pay teams for meeting certain standards of care and a system of peer review was introduced to check that teams were properly organised. Each regional network had a clinical lead and a network co-ordinator and these leaders would also meet twice a year.
For this reason, it was decided to set up a parallel Families network and Jacqui Double was invited to chair it with me as Vice Chair."
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