• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Are all T1 Diabetics treated the same by the NHS?

M

Michey

Member
Messages
16
I've always battled with my diabetes and never had much help and support from my team.
I've had diabetes 25 years and had dawn phenomenon and needed a pump. I met all the NICE guidelines but still had to fight for it due to politics and budgets. It was a battle but I got my pump after going to the PCT.
This evening I met a girl under the exact same team as me only she'd had diabetes 5 years and a completely different experience!
She's been given continuous blood monitors, offered pump and they are now asking her to consider a transplant with a consultant. She's been offered everything, yet I have to battle for anything!
Does anyone know if you're penalised by the NHS for the amount of time you've had diabetes? Or your age? Or your consultant?
I feel so let down by the system - I'm always told about new developments but told they won't be available. My pump is treated like a mobile phone contract and nobody's ever mentioned transplants to me.
Thanks for your responses in advance
Michelle
 
I don't think you could compare anyone to your Ken situation. Transplants are not suitable foe everyone and I believe the longer you have been diabetic the less likely it will work. Also some people are very pushy at getting what they want
 
I've had diabetes for 17 years since I was 1 years old and like you I have to battle to get everything I want. Getting my pump took a while and it still felt as if they really didn't want to give me one even after proving it was beneficial for me. It took them months to even get round to saying I could have one.

I find it unfair that for someone at my age I practically have to battle to get any kind of expensive piece of kit but for kids it's given almost instantly.

I don't think my age helps my case as I'm classed as an adult now so figure I'm down the list for priority and and I've had diabetes for so long.
 
Nicola M said:
I've had diabetes for 17 years since I was 1 years old and like you I have to battle to get everything I want. Getting my pump took a while and it still felt as if they really didn't want to give me one even after proving it was beneficial for me. It took them months to even get round to saying I could have one.

I find it unfair that for someone at my age I practically have to battle to get any kind of expensive piece of kit but for kids it's given almost instantly.

I don't think my age helps my case as I'm classed as an adult now so figure I'm down the list for priority and and I've had diabetes for so long.
Click to expand...
I don't think anyone should have to battle to get stuff - it should be as simple as getting it once you show you meet the criteria. I can understand kids being prioritised because their body is smaller so errors have a bigger impact, plus they are developing educationally and preventable illness can affect that.
 
In comparison I've had a really easy time with my team, they bought up the subject of a pump many times before I decided to go for it, I get appointments when I need them and my DSN is always on the end of a phone or an email. I can't get CGM but thats normal for the NHS and I wouldn't consider transplants.
Michelle, it could be that your friend has suffered many complications that only CGM/pump/transplant can sort out like severe hypo unawareness. A transplant is not something to be taken lightly due to the risks involved and they are certainly not routine. I woould be thankful you're not in the position of needing one!
 
In general, I think it pays to be assertive with HCPs in asking for what you need, and asking them if they know of treatments that may help. If you have to insist on something, don't think you are speaking out of turn. You need to have good support to manage your health and it's their job to do their best to help.
 
Simple answer; NO - and it's going to get a lot, LOT worse...

Being aware of state of the NHS budget - specifically diabetic spending, resource allocation and consequent diabetic clinicaI strategies is incredibly important - at an individual level, to give u context and more importantly understanding of the necessity of 'fighting' for the best possible care)

I'll briefly summarise, as there is an incredible amount of information which forms 'the bigger picture';

-88.9 % Type 2
-8% Type 1
-3.1% other

Diabetes cost the NHS £10 Billion last year.
  • £1 Billion was spent on Medication/Medical devices
  • Diabetic Cardiovascular Complications cost £3.4 billion in last financial year
  • £1.8 billion spent on excess bed days (500,000 bed days)
  • etc...
  • ..and rising exponentially. .
The link below shows the changes in prescribing costs over the last 9 yrs, breaks down total/unit cost of every Diabetes related prescribed item.(sobering reading)

http://www.hscic.gov.uk/catalogue/PUB14681/pres-diab-eng-200506-201314-rep.pdf

The below link is a recently published document from the London Diabetes Strategic Networks.

http://www.londonscn.nhs.uk/wp-content/uploads/2015/02/dia-understanding-ldn-challenges-022015.pdf

Dr Stephen Thomas, the Clinical Director, articulates the issues incredibly well in the foreword.

An excerpt from the FIRST paragraph;

"..For example, almost half of the London population is obese or
overweight. This not only adds to an increased risk and likelihood of type 2 diabetes,
but also impacts on other cardiovascular conditions. Obesity is putting a real strain
on healthcare services across all care settings"

Very informative, in particular the fact that clinics within London are not meeting NICE’s eight care processes guidelines (table 3 in above attachment)

The below link will let u see the breakdown of diabetic complications/deaths in ur particular area (CCG - Clinical Commissioning Group)

http://www.hscic.gov.uk/article/2021/Website-Search?productid=16923&q=National+Diabetes+Audit+ccg&&sort=Relevance&size=10&page=1&area=both#top

(this is CCG a-c, use the search bar to find ur specific area if desired - gives u greater perspective to see the extent of the issue in ur own area)

I have a GENUINE concern for the availability of high quality care in the next 10, 20, 30 yrs etc. I think EVERYTHING that can be done to change Govermental/Manufacturing food policies, and EDUCATE people about lifestyle choices is imperative. These 2 issues are the primary causes of obesity, and need to be addressed ASAP.

It's well evidenced that a SUBSTANTIAL proportion of metabolic conditions are reversible/preventable with diet...and exercise.

Obesity apologists need not comment on my post - this is not about fat shaming - its about education and frankly, being honest.
 
Last edited by a moderator:
xAoifex said:
In comparison I've had a really easy time with my team, they bought up the subject of a pump many times before I decided to go for it, I get appointments when I need them and my DSN is always on the end of a phone or an email. I can't get CGM but thats normal for the NHS and I wouldn't consider transplants.
Michelle, it could be that your friend has suffered many complications that only CGM/pump/transplant can sort out like severe hypo unawareness. A transplant is not something to be taken lightly due to the risks involved and they are certainly not routine. I woould be thankful you're not in the position of needing one!
Click to expand...

This is just it!! - she told me she has excellent control on MDI and doesn't understand why they keep pushing her?? Yet I have hypo unawareness, brittle diabetes and don't seem to get anywhere! And it's not through not trying - I've had to micro manage for years and we want a family which is a hell of an incentive! The pump is amazing don't get me wrong and I'm very grateful to have it - but alot of the time my team are as frustrated as I am that they can't get me what I need!
This is why I asked the question - I wondered if it was due to how long you've had diabetes and if that's used as some "criteria tick box"
 
Neemo said:
Simple answer; NO - and it's going to get a lot, LOT worse...

Being aware of state of the NHS budget - specifically diabetic spending, resource allocation and consequent diabetic clinicaI strategies is incredibly important - at an individual level, to give u context and more importantly understanding of the necessity of 'fighting' for the best possible care)

I'll briefly summarise, as there is an incredible amount of information which forms 'the bigger picture';

-88.9 % Type 2
-8% Type 1
-3.1% other

Diabetes cost the NHS £10 Billion last year.
  • £1 Billion was spent on Medication/Medical devices
  • Diabetic Cardiovascular Complications cost £3.4 billion in last financial year
  • £1.8 billion spent on excess bed days (500,000 bed days)
  • etc...
  • ..and rising exponentially. .
The link below shows the changes in prescribing costs over the last 9 yrs, breaks down total/unit cost of every Diabetes related prescribed item.(sobering reading)

http://www.hscic.gov.uk/catalogue/PUB14681/pres-diab-eng-200506-201314-rep.pdf

The below link is a recently published document from the London Diabetes Strategic Networks.

http://www.londonscn.nhs.uk/wp-content/uploads/2015/02/dia-understanding-ldn-challenges-022015.pdf

Dr Stephen Thomas, the Clinical Director, articulates the issues incredibly well in the foreword.

An excerpt from the FIRST paragraph;

"..For example, almost half of the London population is obese or
overweight. This not only adds to an increased risk and likelihood of type 2 diabetes,
but also impacts on other cardiovascular conditions. Obesity is putting a real strain
on healthcare services across all care settings"

Very informative, in particular the fact that clinics within London are not meeting NICE’s eight care processes guidelines (table 3 in above attachment)

The below link will let u see the breakdown of diabetic complications/deaths in ur particular area (CCG - Clinical Commissioning Group)

http://www.hscic.gov.uk/article/2021/Website-Search?productid=16923&q=National+Diabetes+Audit+ccg&&sort=Relevance&size=10&page=1&area=both#top

(this is CCG a-c, use the search bar to find ur specific area if desired - gives u greater perspective to see the extent of the issue in ur own area)

I have a GENUINE concern for the availability of high quality care in the next 10, 20, 30 yrs etc. I think EVERYTHING that can be done to change Govermental/Manufacturing food policies, and EDUCATE people about lifestyle choices is imperative. These 2 issues are the primary causes of obesity, and need to be addressed ASAP.

It's well evidenced that a SUBSTANTIAL proportion of metabolic conditions are reversible/preventable with diet...and exercise.

Obesity apologists need not comment on my post - this is not about fat shaming - its about education and frankly, being honest.
Click to expand...

I understand that diabetes has become a massive drain on the NHS - but it infuriates me that type 1 diabetics are linked to the obesity crisis and not separated from the studies!! It's an autoimmune disease! I was 7 years old and have never been over weight. My immune system attacked my cells that produced insulin, thus my pancreas creates no insulin. There is NO way of reversing this!! So why should my treatment be budgeted in the same way as somebody who has put so much pressure on their body and won't help themselves?
There are also type 2 diabetics out there who have never been obese! The media really needs to make their findings clearer or rename type 1 - management is completely different . What I wouldn't give to be able to reverse my condition or control through diet and tablets!!
 
Michey said:
I understand that diabetes has become a massive drain on the NHS - but it infuriates me that type 1 diabetics are linked to the obesity crisis and not separated from the studies!! It's an autoimmune disease! I was 7 years old and have never been over weight. My immune system attacked my cells that produced insulin, thus my pancreas creates no insulin. There is NO way of reversing this!! So why should my treatment be budgeted in the same way as somebody who has put so much pressure on their body and won't help themselves?
There are also type 2 diabetics out there who have never been obese! The media really needs to make their findings clearer or rename type 1 - management is completely different . What I wouldn't give to be able to reverse my condition or control through diet and tablets!!
Click to expand...
So obese people have "put so much pressure on their body and won't help themselves"? I think you'll find obesity is caused by insulin resistance, not the other way around.
 
CatLadyNZ said:
So obese people have "put so much pressure on their body and won't help themselves"? I think you'll find obesity is caused by insulin resistance, not the other way around.
Click to expand...

"Some" not all!! Which is why everyone should be treated on an individual merit! I actually know people who admit they haven't looked after themselves and it's triggered type 2 - I'm not on a man hunt here and I appreciate everybody is different - but like it or not, there is a crisis through people not looking after themselves or not being educated to do so
 
Michey said:
"Some" not all!! Which is why everyone should be treated on an individual merit! I actually know people who admit they haven't looked after themselves and it's triggered type 2 - I'm not on a man hunt here and I appreciate everybody is different - but like it or not, there is a crisis through people not looking after themselves or not being educated to do so
Click to expand...
It's common for people to believe they caused their T2 by "not looking after themselves" but if you consider the medical facts you will see this is incorrect. Perhaps before T1s start repeating the myth that T2 is caused by poor food choices, they would do well to read up on the real cause:
http://www.phlaunt.com/diabetes/14046739.php
 
If you look at the NICE guidelines, age does, to some extent, come into the guidance. The ease of obtaining a pump is much higher when you are younger and require insulin dosage in sub 1/2U doses. As an adult, if you are achieving good or excellent results on MDI (and this is considered to be an Hba1C in the realms of 6.5% or lower) then you are also getting into the losing game on the resources available to you.

Once you are outside the clear NICE guidelines, you get into the ABCD guidance, which holds less sway with many teams. This is the selection of options such as needing to inject many times a day (double figures usually helps here), starting to run out of injection sites (age is a benefit in this one), having a very active lifestyle, etc. Once you get to this point, it is more of a fight to get the pump, and the reality is that the way that NICE has costed the CGM technologies, these are almost impossible to get on the NHS.

You don't know whether there are also other health complications with this girl you met @Michey . Being offered a transplant after five years is extremely unusual and suggests that there is considerably more going on than you are aware of. Transplants are typically a last resort when the normal treatments are failing.

The frustration for T1s is that had society not changed to consume the wrong types of food that generate metabolic syndrome and that the government guidance been incorrect encouraging the consumption of the wrong stuff, most older T1s would still have T1, whilst most T2s wouldn't necessarily have T2 (although given the acceleration in T1 cases in the past 20 years, one wonders whether the number of T1s would also be lower had the food advice and environment been better). This means that access to the tools that would make managing the condition is much more difficult on the NHS.

While fixing the dietary advice and availability is the long term answer, in the short term, the NHS isn't going to get any more money. How does it get changed, or how does the funding model get changed, in order to allow those who want access to these tools to obtain them without having to do it privately at great expense?
 
CatLadyNZ said:
It's common for people to believe they caused their T2 by "not looking after themselves" but if you consider the medical facts you will see this is incorrect. Perhaps before T1s start repeating the myth that T2 is caused by poor food choices, they would do well to read up on the real cause:
http://www.phlaunt.com/diabetes/14046739.php
Click to expand...
This is an interesting one, and gives a long winded explanation of the acceleration of Type2. Essentially what she is saying is that amongst the human population there is a large pre-disposal to type2, however dietary and food chain changes over the past 50 years have created the toggle switch that pushes many more into a type2 state than has been previously seen.
 
tim2000s said:
If you look at the NICE guidelines, age does, to some extent, come into the guidance. The ease of obtaining a pump is much higher when you are younger and require insulin dosage in sub 1/2U doses. As an adult, if you are achieving good or excellent results on MDI (and this is considered to be an Hba1C in the realms of 6.5% or lower) then you are also getting into the losing game on the resources available to you.

Once you are outside the clear NICE guidelines, you get into the ABCD guidance, which holds less sway with many teams. This is the selection of options such as needing to inject many times a day (double figures usually helps here), starting to run out of injection sites (age is a benefit in this one), having a very active lifestyle, etc. Once you get to this point, it is more of a fight to get the pump, and the reality is that the way that NICE has costed the CGM technologies, these are almost impossible to get on the NHS.

You don't know whether there are also other health complications with this girl you met @Michey . Being offered a transplant after five years is extremely unusual and suggests that there is considerably more going on than you are aware of. Transplants are typically a last resort when the normal treatments are failing.

The frustration for T1s is that had society not changed to consume the wrong types of food that generate metabolic syndrome and that the government guidance been incorrect encouraging the consumption of the wrong stuff, most older T1s would still have T1, whilst most T2s wouldn't necessarily have T2 (although given the acceleration in T1 cases in the past 20 years, one wonders whether the number of T1s would also be lower had the food advice and environment been better). This means that access to the tools that would make managing the condition is much more difficult on the NHS.

While fixing the dietary advice and availability is the long term answer, in the short term, the NHS isn't going to get any more money. How does it get changed, or how does the funding model get changed, in order to allow those who want access to these tools to obtain them without having to do it privately at great expense?
Click to expand...
I think the problem is that the NHS isn't going to get any more money. This pits one group against another. IMO governments should increase the health spend to meet the needs of an aging population and more expensive technologies. There is enough money - they just need to redirect it.
 
CatLadyNZ said:
It's common for people to believe they caused their T2 by "not looking after themselves" but if you consider the medical facts you will see this is incorrect. Perhaps before T1s start repeating the myth that T2 is caused by poor food choices, they would do well to read up on the real cause:
http://www.phlaunt.com/diabetes/14046739.php
Click to expand...

Whatever the cause the treatment is still very different! The point of my thread was to establish if there are specific criterias you have to meet for treatments. Not to get involved in a debate where statistics and media fuelled frenzy influence. I fully appreciate triggers are different - I'm not questioning that at all! I am not type 2 and can only draw on my T1 experience with the NHS - hence stated in my title.
 
Michey said:
Whatever the cause the treatment is still very different! The point of my thread was to establish if there are specific criterias you have to meet for treatments. Not to get involved in a debate where statistics and media fuelled frenzy influence. I fully appreciate triggers are different - I'm not questioning that at all! I am not type 2 and can only draw on my T1 experience with the NHS - hence stated in my title.
Click to expand...
I was just letting you know that blaming T2s for the lack of money available for T1s is not the way to go.
 
Michey said:
I understand that diabetes has become a massive drain on the NHS - but it infuriates me that type 1 diabetics are linked to the obesity crisis and not separated from the studies!! It's an autoimmune disease! I was 7 years old and have never been over weight. My immune system attacked my cells that produced insulin, thus my pancreas creates no insulin. There is NO way of reversing this!! So why should my treatment be budgeted in the same way as somebody who has put so much pressure on their body and won't help themselves?
There are also type 2 diabetics out there who have never been obese! The media really needs to make their findings clearer or rename type 1 - management is completely different . What I wouldn't give to be able to reverse my condition or control through diet and tablets!!
Click to expand...

Yes, there are a proportion of type 2s whose illness can be attributed primarily to genetics/environmental factors - but they can still mitigate the 'effect and extent' of their illness by adopting a carb free diet.

It's not about blaming, as such, its just the fact that the goverment can't afford to procrastinate any longer -THERE IS NO MONEY! !

Look at the budget 2015 and tax receipts; WHERE is the money going to come from??

500,000 bed days for all diabetics in the last year - kinda understand why hospitals are massively oversubscribed!!

Ur still VERY fortunate, I was discharged from the hospital diabetes team nearly 8 yrs ago (31 - type 1 for 20) I only see a local diabetic nurse a couple of times a year - nice lady, BUT UTTERLY CLUELESS - therefore I pretty much have to fend for myself and push for every test/medicine.
 
Neemo said:
Ur still VERY fortunate, I was discharged from the hospital diabetes team nearly 8 yrs ago (31 - type 1 for 20) I only see a local diabetic nurse a couple of times a year - nice lady, BUT UTTERLY CLUELESS - therefore I pretty much have to fend for myself and push for every test/medicine.
Click to expand...
Given that the majority of T1s, whilst sharing the condition, each have very individual management needs dependent on their body, lifestyle, etc., is this approach actually a bad thing?
 
I agree with Tim, there has to be something else going on, a well controlled person without complications doesn't get a transplant. Maybe,her doctor was discussing the future possibility of Islet transplants using stem cells/

At the moment, islet cell and pancreas only transplants are normally given for people who have severe hypoglycaemic unawareness; ie they have frequent really severe hypos and need outside help with them
It takes two pancreases to get enough cells for islet transplants(which is really experimental in the hope that the procedure is refined and that soon we will be able to culture sufficient cells) Obviously just one organ is used for pancreas transplants.
Paradoxically it's a bit 'easier' to get a kidney and pancreas transplant but people get these because their kidneys are failing If the person is diabetic it makes sense to use the pancreas to treat the original problem. In consequence there aren't so many pancreases available for the other transplants
People who have had diabetes for only five years are unlikely to be in either 'boat'.

Last year there were 29 pancreas only transplants, 173 pancreas and kidney transplants and 23 Islet cell transplants. In June, there are 191waiting for pancreas/kidney transplants and 47 for Islets.
http://www.nhs.uk/Conditions/pancreastransplant/Pages/Introduction.aspx
Islet cell transplant guidelines
https://www.nice.org.uk/guidance/IPG257/chapter/1-guidance
(transplant stats)
https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1067/united_kingdom.pdf
 
Back
Top