The meeting went ahead with Baroness Barbara Young, Louise & Libby from DUK despite the snow. Due to a technical hitch people using Skype couldn't join the meeting.(my user error I think!!).A few people couldn't make it because of the snow.
I have often sat and pondered, what exactly do I want for Claudia.
The answer: A happy healthy "normal" life!
How can that be achieved with a child with Type 1?
My thoughts: a pathway needs to be put in place that is age appropriate and comprehensive(includes all aspects of living with Type 1). This pathway should enable any child of any age to tap into it smoothly at diagnosis and walk down its seemless path until adult hood.
Recently I was lucky and had an insight into the "German Model Of Care"
It brought a tear to my eye.
In brief:
Germany deliver a standard of care that every single child and family should receive at diagnosis!
They "treat the whole family". The care and education is "age appropriate" and is continual!!
I am hoping that I will have parts of the presentation to put on my site.
The most striking slide for me: A pie chart that was almost all pale blue except for a thin and I mean a thin red line. That was the input from the medical care team each year.
The point made: It is crucial that the hospital visits are as positive,supportive and are high impact.
So how can Diabetes UK fit into our lives and help support us and perhaps help the UK achieve a similar standard of care through out the UK,that is delivered in Germany? I have to say there are teams within the UK that come very close. However there are many areas that are no where near!!
For me personally you can't hold Diabetes UK or any Diabetes Charity accountable for many aspects of our diabetes care. They do not run the Health Service or hold the funding. Having said that they are in the position to help influence and support. They are prepared to take money that we have raised and with that comes accountability!!
Most of the questions put forward contained common themes:
Awareness Of Type 1 Diabetes, including symptoms
Confusion between Type 1 Diabetes &Type 2
Access to pumps & CGM's
Support within the Education System (from nursery to Uni)
Factually correct "Information/article" given by DUK & hospitals.
Contents of the Balance Magazine!
In fact the list is endless, which makes it challenging for people living with Type 1 Diabetes and I suppose Diabetes UK. We could have spent many days debating each question and answer.
So where do we start? I feel that in the past Diabetes UK have tried to cover too many issues often leading to minimal or no impact.
So do we beat them over the head for some of the "faux-pas " they have made in the past or do we start with a clean slate?
They have spent an enormous amount of time along with NHS Diabetes, Primary Care, the Government and other bodies highlighting Type 2. It needed to be done. However not at the expensive of putting Type 1 into the shadows.
I don't think anyone had any idea the "negative impact" that this massive Campaign for Type 2 would have on Type 1 community.
Diabetes UK Facts:
They are re-branding, changing it's colour and logo.
There will be a Campaign Next Year supporting people with Type 1.
To be agreed: what exactly is to be covered and supported.
They do support many research, projects in Type 1. They just fail to make them easy to find!
Everyone will have different ideas on what should be a priority. To get an idea Diabetes UK has several meetings over the next few weeks, with key groups to try and understand and prioritise how they can best support the Type 1 community.
How we can help Diabetes UK get it right.
A major issue is: how detailed and graphic should articles by about Type 1 Diabetes and who should the information be aimed at?
There are parents and young people who want to know everything, the good the bad and the ugly and lets remember Type 1 can certainly tick the ugly on many occasions. There are parents and young people who want to know the good and some of the bad. Then there is the group that only want to know the "good".
As a Charity that is difficult to pitch right on many occasions. I am in no way defending Diabetes UK, but perhaps in hindsight I can see why certain situations have arisen.
I am a massive believer in "informed choice" and the fact what is right for one child/family may not be for another. So I think it is vital that we always respect each other, even if we don't agree.
One huge issue for me and many others: conflicting medical advice and information/articles. How do we get over this? Who is right and who is wrong? Is there middle ground? Would a major step be for all the clinical teams to agree a set of guidelines, covering testing, illness, carb counting, night time hypo's etc etc. How would we achieve the above?
Who should Diabetes UK use for clinical advice, given that clinicians often have different opinions. How accurate are the results and outcomes of some studies?
Where should Diabetes UK start in what only can be described as bluuuuuuuuuurrrrrrrrrrrrrrrrr. Where would you start? Taking into account cost and needing maximum impact.
The National tariff looks promising. If it comes to fruition,(it should) for the first time ever, clinics will be awarded funding for each child that attends. There is a framework that will come with this tariff and in order for the Hospitals to claim their funding they will have to meet certain criteria.
I will post the minutes of the meeting when they are agreed with Diabetes UK.
Mark, who was at the meeting said: "I don't mind who does what as long as the care for our children with Type 1 Diabetes dramatically improves." I think he is spot on!! Taking that into account. I believe we all need to work together in one direction in order to be successful.
Perhaps this is the appropriate time to draw a line in the sand and start afresh.
Only time will tell!
I have often sat and pondered, what exactly do I want for Claudia.
The answer: A happy healthy "normal" life!
How can that be achieved with a child with Type 1?
My thoughts: a pathway needs to be put in place that is age appropriate and comprehensive(includes all aspects of living with Type 1). This pathway should enable any child of any age to tap into it smoothly at diagnosis and walk down its seemless path until adult hood.
Recently I was lucky and had an insight into the "German Model Of Care"
It brought a tear to my eye.
In brief:
Germany deliver a standard of care that every single child and family should receive at diagnosis!
They "treat the whole family". The care and education is "age appropriate" and is continual!!
I am hoping that I will have parts of the presentation to put on my site.
The most striking slide for me: A pie chart that was almost all pale blue except for a thin and I mean a thin red line. That was the input from the medical care team each year.
The point made: It is crucial that the hospital visits are as positive,supportive and are high impact.
So how can Diabetes UK fit into our lives and help support us and perhaps help the UK achieve a similar standard of care through out the UK,that is delivered in Germany? I have to say there are teams within the UK that come very close. However there are many areas that are no where near!!
For me personally you can't hold Diabetes UK or any Diabetes Charity accountable for many aspects of our diabetes care. They do not run the Health Service or hold the funding. Having said that they are in the position to help influence and support. They are prepared to take money that we have raised and with that comes accountability!!
Most of the questions put forward contained common themes:
Awareness Of Type 1 Diabetes, including symptoms
Confusion between Type 1 Diabetes &Type 2
Access to pumps & CGM's
Support within the Education System (from nursery to Uni)
Factually correct "Information/article" given by DUK & hospitals.
Contents of the Balance Magazine!
In fact the list is endless, which makes it challenging for people living with Type 1 Diabetes and I suppose Diabetes UK. We could have spent many days debating each question and answer.
So where do we start? I feel that in the past Diabetes UK have tried to cover too many issues often leading to minimal or no impact.
So do we beat them over the head for some of the "faux-pas " they have made in the past or do we start with a clean slate?
They have spent an enormous amount of time along with NHS Diabetes, Primary Care, the Government and other bodies highlighting Type 2. It needed to be done. However not at the expensive of putting Type 1 into the shadows.
I don't think anyone had any idea the "negative impact" that this massive Campaign for Type 2 would have on Type 1 community.
Diabetes UK Facts:
They are re-branding, changing it's colour and logo.
There will be a Campaign Next Year supporting people with Type 1.
To be agreed: what exactly is to be covered and supported.
They do support many research, projects in Type 1. They just fail to make them easy to find!
Everyone will have different ideas on what should be a priority. To get an idea Diabetes UK has several meetings over the next few weeks, with key groups to try and understand and prioritise how they can best support the Type 1 community.
How we can help Diabetes UK get it right.
A major issue is: how detailed and graphic should articles by about Type 1 Diabetes and who should the information be aimed at?
There are parents and young people who want to know everything, the good the bad and the ugly and lets remember Type 1 can certainly tick the ugly on many occasions. There are parents and young people who want to know the good and some of the bad. Then there is the group that only want to know the "good".
As a Charity that is difficult to pitch right on many occasions. I am in no way defending Diabetes UK, but perhaps in hindsight I can see why certain situations have arisen.
I am a massive believer in "informed choice" and the fact what is right for one child/family may not be for another. So I think it is vital that we always respect each other, even if we don't agree.
One huge issue for me and many others: conflicting medical advice and information/articles. How do we get over this? Who is right and who is wrong? Is there middle ground? Would a major step be for all the clinical teams to agree a set of guidelines, covering testing, illness, carb counting, night time hypo's etc etc. How would we achieve the above?
Who should Diabetes UK use for clinical advice, given that clinicians often have different opinions. How accurate are the results and outcomes of some studies?
Where should Diabetes UK start in what only can be described as bluuuuuuuuuurrrrrrrrrrrrrrrrr. Where would you start? Taking into account cost and needing maximum impact.
The National tariff looks promising. If it comes to fruition,(it should) for the first time ever, clinics will be awarded funding for each child that attends. There is a framework that will come with this tariff and in order for the Hospitals to claim their funding they will have to meet certain criteria.
I will post the minutes of the meeting when they are agreed with Diabetes UK.
Mark, who was at the meeting said: "I don't mind who does what as long as the care for our children with Type 1 Diabetes dramatically improves." I think he is spot on!! Taking that into account. I believe we all need to work together in one direction in order to be successful.
Perhaps this is the appropriate time to draw a line in the sand and start afresh.
Only time will tell!
Many thanks for this update!
ReplyDeleteFrom one Parent of Type1 definitely in the 'informed choice' camp! btw - have recently relocated to NW Germany (British Forces) from Scotland - will let you know my thoughts on the German system once we're more familiar with it!
Hello,
ReplyDeleteThat would be brilliant. After hearing the presentation, it would be great to hear the thought of a parent/patient who are now receiving care in Germany. xxx