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SB2015 said:
Hi Hannah
Although the regional offices may know about the local groups that does not magically create a group that is more focused on Type 1. There may be T1 groups in large cities , especially university towns, but there are very few in the more rural areas, which is why like Amberzack, I am interested in DUK addressing the needs of adults with T1, as well as the needs for people up to the age of 30.
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SB - from somewhere or another - the Involvement Network I believe - I have only today received an email asking for T1s to volunteer to review some leaflets which are currently published and intended to assist Type 2 Peer Support Groups - but which have been changed so as to apply to Type 1 Peer Support Groups.

I've volunteered to do this - however I asked the question you are asking - I wasn't aware that such Type specific Groups ran for either Type !!

I'm not interested in starting one since I have channels in force that I've dug myself, should I need advice - and I'm not interested now in either running one or being an Officer (of anything, we both spent enough years doing that!) but I would have found one useful had there been one available in my hours of need. Instead I joined a forum, because there was no other choice open to me. However - I might be able to support one locally if people need the type of questions answered that we answered here - and also to let them know they aren't alone or different - and get comfort from that alone.
 
DeusXM said:
Which unfortunately confirms my worst fears. Your funding strategy is reactive, not proactive. That's appalling for an organisation that is supposed to be taking a leadership role.
It's a really simple question: why isn't Diabetes UK leading and co-ordinating the UK diabetes research agenda? Why are we allowing private institutions with no particular stake in diabetes to effectively determine what gets researched?
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Hi - The simple answer is that, we are leading and co-ordinating the UK diabetes research agenda and we do not allow private institutions to determine what is researched.

We have a mixture of strategic and non-strategic research proposals. For both types of submissions, only researchers who are based in NHS hospitals or Universities, within the UK can submit applications. Applications go through a rigorous screening process. Once submitted they are reviewed by both national and international experts in the field, before being screened by a Research Panel and our Grants Advisory Panel. The general proposals we receive are non-strategic.

Strategic submissions occur when we invite researchers in a particular scientific field, to propose projects based on a certain area of research. We recently did this with the research into immuno-therapy.

To improve our approach to strategic submissions, we have developed a new structure and process to help us prioritise for these requests. This has been developed through the creation of our Clinical Studies Groups. The groups have been broken down into different themes (see the framework diagram on our website). We are currently finding leaders in each field who will determine what the framework should be for each group. We're also recruiting Chairs and key members who will be expert clinicians or leaders in their field. The groups will also include members of the public who are living with diabetes. The groups will aim to find out what is already being researched in their field, what is not being researched, where the gaps are and thus what needs to be looked at. These groups will help us to prioritise the most vital research in each area and will influence our future themed-strategic requests to researchers.

In addition to the development of the CSG's, we are working in partnership with the James Lind Alliance who oversee Priority Setting Partnerships and will help us to determine the Top 10 research priorities for the year. This information will be fed into the Clinical Study Groups to establish the top priorities in research. Combined with the CSG investigations, this will help in influencing future research. It will also help support the groups in obtaining additional funding from NIHR National Institute of Health Research, meaning more funding and better research!

We are continuously seeking the opinions and support of everyone to help us tell determine what needs to be researched and what changes need to happen. Please help us do this, through answering any surveys posted or evidence submission requests – you can get involved with our current request on our website here.

These surveys help our Research Team - but we look for your help and advice across the board - I will keep you all posted whenever there is a request out there 🙂
 
Hello - I have just some additional information from Anna Morris, our Head of Research Funding. Hopefully this will help to clarify things a little further around the way research is funded. 🙂

Many thanks for your enquiry. I am pleased to say that Diabetes UK is at the forefront of leading and co-ordinating setting of the diabetes research agenda and I will give some examples of what we are currently doing in this space. I should say we do have a mixed approach to funding which does include our researcher led funding streams (all awarded to not for profit academic institutes such as hospitals and universities) but we also have a strategic approach to funding.

Over the years Diabetes UK has issued a number of strategic calls in specific areas that have been identified as priorities by Diabetes UK and our Science and Research Advisory Group (made up of people living with diabetes, healthcare professionals and researchers). To give a few examples, it is through this process that we awarded the study in Cambridge on the artificial pancreas, the trial in Glasgow and Newcastle on the low calorie diet for Type 2 remission and most recently the awards investigating a vaccine for Type 1 diabetes.

When we issued our new research strategy at the end of 2015 one of the things we committed to doing was increasing the voice of people with diabetes in our research funding programme and to take an even greater lead in setting the research agenda for diabetes. To do this we have initiated two new activities.

Firstly we will be setting up the first ever Clinical Studies Groups for diabetes. These groups will bring together people living with diabetes, healthcare professionals and scientists across a number of broad topic areas to identify the gaps in research that are holding progress back and the priority areas and studies that will move us forward more quickly. We will then use these priorities to influence our funding programme but also to influence other UK funders. You can read more about the groups here https://www.diabetes.org.uk/Research/Our-approach-to-research/Clinical-Studies-Groups/

In addition to setting up the Clinical Studies Groups we are also carrying out a Priority Setting partnership for Type 2 diabetes in association with the James Lind Alliance. This partnership (which takes the form of a nationwide survey followed by focus groups) will allow us to find the Top 10 research priorities for people with Type 2 diabetes, carers and healthcare professionals. The priorities are then used to influence those who work in universities and academic institutions, government agencies or in industry. Diabetes UK will use the priorities in the decisions it makes about how research is funded. You can read more about the process (and if you have Type 2 diabetes complete the survey) here: https://www.diabetes.org.uk/Research/Our-approach-to-research/Have-your-say/Type-2-diabetes-Priority-Setting-Partnership/This is the first time there has been a Priority Setting Partnership for Type 2 diabetes but there has been one for Type 1 diabetes and you can read about the outputs of that here https://www.diabetes.org.uk/Research/Our-approach-to-research/Have-your-say/Type-1-diabetes-Priority-Setting-Partnership/

I hope that this reassures you that we are active in setting the agenda for research in diabetes and committed to reflecting the views of people living with diabetes when we do so. If you’d like to discuss any aspect in more detail I would be very happy to do so.

Anna Morris, Head of Research Funding
 
Thanks @Hannah M (and indeed, Anna too!) for clarifying - good to see that there is actually a proactive approach.

I would say though that is extremely disappointing that despite having 10 top priorities for T1 research, not one of these priorities is 'find a cure'. I don't disagree that the other things on the list such as closed-loop pumps could ultimately lead to a workable 'permanent' treatment of cure but I'm really quite worried about how much is spent on research aspects where the answer seems to either be very easy to answer as yes or no (seriously, you're still having to ask if pumps are a good idea? This argument was settled 20 years ago which is why they're frontline treatment in Europe and North America), and worst of all, there is no reference at all to a cure.

I note the priorities list states 'The priorities of people with Type 1 diabetes are very important to us, and we may review the current list of priorities in the next few years, to make sure that it’s still a true reflection. We're currently supporting work to answer a number of the priorities.' I suspect if you ask anyone with T1 'what do you think is the most important thing to research in diabetes', none of them would say 'I would like to find out if people who are better trained are better at supporting with people with diabetes'.

Each and every one of us is going to say 'I would like you to find out how to cure diabetes'.

Just one of the research priorities for Diabetes UK in T1 is even tangentially related to finding a cure.

So my official feedback is, have as many priorities as you want. But don't forget that the absolute, non-negotiable, number 1 eternal priority is finding a cure.
 
Yes - but Deus you have to appreciate that whilst people are looking for a cure - people MUST be assisted to live with the diabetes. By all means find a cure (LOL) but please don't spend all your resources on that - cos 'I' need help NOW. (not me actually, right at the mo, but there are millions of 'mes' aren't there?)

I wouldn't be at all happy if DUK were to say that's that - we'll pay scant attention to day to day issues despite knowing there are problems and difficulties arising all over the place - day to day - we are going the spend a LOT more of our income solely on a cure.

They also can't fund research for everything we need and want, ALL the time. I'm blooming certain that finding a cure for T1 isn't most T2's priority!
 
trophywench said:
Yes - but Deus you have to appreciate that whilst people are looking for a cure - people MUST be assisted to live with the diabetes. By all means find a cure (LOL) but please don't spend all your resources on that - cos 'I' need help NOW. (not me actually, right at the mo, but there are millions of 'mes' aren't there?)

I wouldn't be at all happy if DUK were to say that's that - we'll pay scant attention to day to day issues despite knowing there are problems and difficulties arising all over the place - day to day - we are going the spend a LOT more of our income solely on a cure.

They also can't fund research for everything we need and want, ALL the time. I'm blooming certain that finding a cure for T1 isn't most T2's priority!
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I appreciate that, which is why I said we should have other priorities too, but the #1 should always be the cure. At this stage it looks like Diabetes UK has zero interest or involvement in finding a cure. Also, this is the T1 research priority list, not the general priority list.
 
DeusXM said:
I appreciate that, which is why I said we should have other priorities too, but the #1 should always be the cure. At this stage it looks like Diabetes UK has zero interest or involvement in finding a cure. Also, this is the T1 research priority list, not the general priority list.
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I agree. To my mind JDRF are doing the most - T1 specific research with the aim of finding a cure.
 
Well you'd expect them to, else why are they called that! LOL

DUK do not actually exist primarily for the purpose of research even, let alone for a cure! They have to be all things to all men (women and children ......)
 
Thanks for your comments @DeusXM, there is really no denying the importance of finding a cure. It is one of the 3 main goals in the Diabetes UK Research Approach and is central to the entire Research Strategy. These goals are what we adhere to when looking at all research proposals. The 3 goals are:
Care: Improve care and self-management for people living with diabetes today
Cure: Find ways to cure diabetes in those who have it now or develop it in the future
Prevent: Stop diabetes and its complications before they develop in those at risk

There is no dispute that finding a cure is an essential priority, however, you may appreciate that it is important to continue to fund research in other areas as unfortunately, we cannot know how long it will take to find a cure.
All of this broadened research in diabetes care and prevention has helped develop things such as glucose monitors, insulin pens, insulin pumps, CGM's to name a few. The changes in diabetes technology have been huge over the years, and without continued research across different areas these advances would not have been achieved. Curing diabetes has always been and will remain a key priority in research funding until it is achieved.
 
Hi there. We really appreciate the work done by DUK, and fully understand that newly diagnosed adults and children with their families probably need most support. But does DUK hold care events for older Type1s and their carers? My 65 year old husband was diagnosed Type 1 over 30 years ago. He no longer gets warnings of hypos, suffers from increasing tiredness, and his eyes are well lasered. I would love to share a day with older Type 1s and their carers...because that is my increasing role. Is there anything organised for us?
 
I work on the front line in a busy office where I meet customers face-to-face on a daily basis.

On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.

I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.

At 10:39am my blood glucose level was 2.5mmol/l.

The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695

Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?

Any advice or opinion would be gratefully received.
 
Chappy1234 said:
I work on the front line in a busy office where I meet customers face-to-face on a daily basis.

On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.

I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.

At 10:39am my blood glucose level was 2.5mmol/l.

The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695

Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?

Any advice or opinion would be gratefully received.
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Did you test after eating the treatment? Did you test after the 'incident'? Much would depend on the hypo and reason for it - it's perfectly possible to have a hypo, treat it and recover, then suffer another hypo an hour later. I think it is highly unlikely you would have remained hypo for a full hour (after treating the 2.5) without being aware of it, and the rule is to test again after 15 minutes to ensure your levels have risen. As I said though, nothing to say you couldn't have dipped again - did you have any further treatment after the incident?
 
Diabeteshelper said:
Hi there. We really appreciate the work done by DUK, and fully understand that newly diagnosed adults and children with their families probably need most support. But does DUK hold care events for older Type1s and their carers? My 65 year old husband was diagnosed Type 1 over 30 years ago. He no longer gets warnings of hypos, suffers from increasing tiredness, and his eyes are well lasered. I would love to share a day with older Type 1s and their carers...because that is my increasing role. Is there anything organised for us?
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Hi and thanks for your comment in this thread. You raise a really good point. The subject of care events for the growing adult demographic of those with T1 has been mentioned on this thread previously and it is something that is currently being reviewed for 2017 events. We have taken onboard this increased need for events for those over 30, however creating events for older Type 1s and their carers is something that hasn't yet been raised and so certainly something to be considered. Expanding care events to a wider range of age groups is something that we have seen a growing need for and we are grateful for any ideas and suggestions - the more feedback we recieve the better, so thank you again!
 
Chappy1234 said:
I work on the front line in a busy office where I meet customers face-to-face on a daily basis.

On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.

I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.

At 10:39am my blood glucose level was 2.5mmol/l.

The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695

Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?

Any advice or opinion would be gratefully received.
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Hi, if you need any extra guidance in regards to your appeal against your employers decision, you may find this informaiton pack useful: https://www.diabetes.org.uk/Upload/How we help/Avocacy/Advocacy pack_EmploymentV3-Jan2016.pdf
 
Hannah M said:
Hi and thanks for your comment in this thread. You raise a really good point. The subject of care events for the growing adult demographic of those with T1 has been mentioned on this thread previously and it is something that is currently being reviewed for 2017 events. We have taken onboard this increased need for events for those over 30, however creating events for older Type 1s and their carers is something that hasn't yet been raised and so certainly something to be considered. Expanding care events to a wider range of age groups is something that we have seen a growing need for and we are grateful for any ideas and suggestions - the more feedback we recieve the better, so thank you again!
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Hi Hannah
For older adults who are diagnosed with T1, many of the needs are the same as for those that are younger adults. Can you tell us what the programme has been for the 18 - 30 days. It could then help us to identify where there are commonalities and also what needs to be different.
From earlier conversations I know that at the 18 - 30 there is some emphasis on transitions from paediatric care to adult and also from college to work. It may be that there is no need to reinvent the wheel but better to adapt it. I am aware that for this year there was one event for all adults in London which unfortunately I was unable to attend. What was the programme there. How well did it work?
Perhaps between us we can come up with some ideas.
 
Hannah M said:
Hello everyone, as Northerner has kindly mentioned, I’m here to answer any niggling questions you may have about Diabetes UK, pass on your views or thoughts and offer insight to things happening in the organisations. I’m really looking forward to getting to know you all and become part of this very supportive community. 🙂:D
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Hi Hannah
I am very happy to chat here I hope you can help I have been reading that some blood glucose meter are now non compliant with current regulations I have a Freestyle Freedom Lite is this compliant.
Many thanks
Andrew Lindsay
 
SB2015 said:
Hi Hannah
For older adults who are diagnosed with T1, many of the needs are the same as for those that are younger adults. Can you tell us what the programme has been for the 18 - 30 days. It could then help us to identify where there are commonalities and also what needs to be different.
From earlier conversations I know that at the 18 - 30 there is some emphasis on transitions from paediatric care to adult and also from college to work. It may be that there is no need to reinvent the wheel but better to adapt it. I am aware that for this year there was one event for all adults in London which unfortunately I was unable to attend. What was the programme there. How well did it work?
Perhaps between us we can come up with some ideas.
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Absolutley - we would like to get some input during the planning process for the 2017 events so I will keep you updated. I will also come back to you in the next few days with some feedback from the adult event last month. 🙂
 
Andrew David Lindsay said:
Hi Hannah
I am very happy to chat here I hope you can help I have been reading that some blood glucose meter are now non compliant with current regulations I have a Freestyle Freedom Lite is this compliant.
Many thanks
Andrew Lindsay
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Hi Andrew - did you get your meter through your GP or did you purchase it yourself? GPs should be ensuring that non-compliant meters are replced to compliant models. However, probably the best thing to do would be to call the manufacturer Abbot Diabetes Care on 0500 467 466 as they can clarify if your specific model is compliant.
 
Dear Hannah, Is there any chance of DUK lobbying to get neuropathy recognised as a disability. I have had diabetes for forty two years and was the typical rebel teenager who could eat and drink what she wanted and never bothered about blood sugar levels. This carried on throughout y twenties,thirties and fortiesand for a brief period of time ,in my fifties, l finally started to take diabetes seriously but l then fell ill with a uti that the medics failed to cure which has led to me being admitted nine times with sepsis. To cut a long story short l am claiming pip but they refuse to accept that my neuropathy gets worse after each bout of sepsis or that it even exists and causes me severe pain.l am in the process of investigating leg amputation and what the difference would be compared to the constant pain of neuropathy that l am suffering now. I am trapped inside my own little prison now that l cannot even have a mobility car.l have neuropathy and arthritis in my back so cannot just get into any car or taxi. I'll go now before l get too maudlin
 
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