Why does the standard of care differ in the uk

hey @DannyH ...unfortunately the postcode lottery is alive and well across the UK --- if you are looking for tech specifically i would suggest contacting Dr Partha Kar on Twitter as he is a hero in fighting for people on an individual basis across England

the other thing i want to say on this which might not be popular is that we as individuals have to advocate ( fight) for ourselves because the system is so beaurocratic and does not provide a catch all for all of us

KennyA said:

I understand where you're coming from. The main issue I think is that the health service in England has to cope with caring for around 60 million people all of whom are individuals with differing needs. To get round the problem of ensuring that everyone got good care, governments over the last thirty or forty years have done two things. Firstly, they set up the National Institute of Health and Care Excellence (NICE) in 1999 with the aim of avoiding a "postcode lottery" over who got what. NICE guidelines provide a standarised approach to healthcare in England and Wales. Of course the idea of a settled standarised approach is difficult if information or evidence changes: it is often hard to change a guideline once it's in place. You'll find more here: https://www.nice.org.uk/

However, at the same time, governments have devolved funding decisions to local healthcare organisations largely consisting of local GPs. These bodies get to decide what NHS resources are used for in local areas, but whatever services are provided must be provided according to the NICE guidelines. Unless the local organisations have a bottomless money pit (and they don't) they have to prioritise some things above others, often because there are particular healthcare problems in that location - think cities versus countryside, for example. So areas will usually have services provided slightly differently - but all to the standards set in the NICE guidelines.

Hope that's useful - I worked in this area for about thirty years....

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hard to compare around 400,000 type 1 diabetics against a population of 60 million plus people in terms of needs ..we make up less than 1% of the UK population ....we do require more in terms of support to stay alive but we certainly should not be grouped with the majority of people living in the UK that are healthy in terms of allocating resource

I would say it's not just about giving people the latest technology. A Freestyle Libre will does not make someone's Hba1C better – the user engaging with their Freestyle Libre and learning more about their diabetes as a result makes their Hba1C better.

I've had a Libre since 2016 and it did make my control a bit better but it's only really this year I truly ramped up the standard I set for myself.

Therefore, even though I've had the same technology for six years but it's only in the last of those six years I've really made the most of it. The reason I used to have worse control than I do now is primarily because my approach was wrong, not because I didn't have sufficient technology.

If you want any examples of how I made things better, I am happy to share them.

DannyH said:

Hi I get a little bit how things work I just don't get why. As before after 32 years I still struggle to get any meaningful access to a pump or consultants etc. I attend diabetes appointments regular, but huge waiting lists or criteria to meet etc. As before losing vision, kidney problems, explained having stomach issues to be told might have gastroparesis, asked about what tests can be done and again a consultant needs to refer me but they seem non existent. But the amount of operations over the last year or so on eye alone must run into the 10s of thousands of pounds, then I have lucentis eye injections around 800 a time which I have once every month or 2. The cost of complications seem far higher than the initial things that could help me in the long run. I'll keep trying, but think already accepted what's to be. Just seems a shame and on a financial point of view seems to be working backwards. They seem to struggle to fund anything preventive measures or help etc, but will run up huge costs treating complications etc, just doesn't make sense to me.

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Agree completely baffling over the longer term.

I'd reason, THAT is as @KennyA describes the decentralisation of funding, etc.


Surgery A has so much money to spend .

Hospital B has so much money to spend.

Both will be judged by many matrixes as to how well they perform.

Seems to me, Surgery A doesn't, & probably cant think long term under the current regime, if it's going to make budget and stay within marked boundaries

Increasingly that will see others not treated early enough (and a long term cost saving way ) to avoid some progressing of an illness.

Diabetes comes straight to mind.

So that now impacts on Hospital B, putting pressure on it & it's waiting list/services.

Which clearly can do little to slow the overflow from the poor (poorer then it should/could be) decision making at GP level..

Meaning longer waits, poorer outcomes, more return visits to GP, etc etc and so the cycle goes on & on.


So not right, for us as a population or as patients.

Not very joined up thinking, sadly

Sadly Danny pumps are expensive and your trust is only likely to fund one if you meet NICE guidelines for one, they are not a magic wand to good control, as they require a lot of input and adjusting with ratios to start with, otherwise you are simply taking up a pump and achieving high levels again using this instead. I know from your posts that you are struggling to get your levels into single digits, they would want to see you working harder on achieving this as without the input from you then they are unlikely to fund a pump as they would view that it wouldn't be useful for you. They can also take the pump away if they feel you aren't working well with it too.

Sorry if this sounds harsh, but that's all from my experience of getting access, it really does help to have a DSN on your side to work with you, regardless of which trust you fall into, getting a good one on your side can turn things around, I wouldn't have my pump today if a DSN didn't believe in me and help to gain access, also I got refused at first, but we persisted and got access about 8 months or so later, so it's a long process.

I was told that I couldn't have a Libre because my type one was sufficiently well controlled that I wouldn't see any benefit from using one and thus costing the NHS more money for no benefit , which you have to say has a logic behind it .

DannyH said:

Just a quick query as a type one for 32 years just wondering why the standard of care is different up and down the country and not the same for everyone. As having various issues from my eyes, kidneys etc at 42 think I've all ready accepted my fate. What I don't get though from losing vision, to kidney problems to feeling rubbish alot. Getting access to consultants or the newer technology ie pumps etc, why is it so hard for some yet others have been on a pump for years. Even the pump manufacturers say please contact your local hospital for availability on the NHS as each one is different. Basically admitting some hospitals do fund things like the pump and others won't. Think all the work diabetes UK and all the other companies bringing out newer technology should make sure it's available to all or at the very least to the people that most need it. I just don't get it at all. The complications etc from diabetes costs alot more in the long run than the initial costs of helping diabetics more in the prevention of complications. In 2022 in the UK it's so hit and miss with the care and funding you receive, we are still living in a time where your place of birth does have an impact on life expectancy. Shame.

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Ultimately, the standard of care differs across the country because that is the system of healthcare which 650 members of Parliament (or their predecessors) have allowed to come into effect.

Oh, and because the NHS in England receives a finite amount of money each year. That pot of money is distributed unequally amongst the various health authorities in England (according to a BBC Newsnight programme I saw recently, counterintuitively the more deprived an area, the less NHS funding it receives) who have to prioritise what they consider to be the most important health issues, particularly as the health authorities who commission care are required legally to balance their budgets each year.

I believe cancer care receives more funding than any other disease.

Endless tinkering with the healthcare system since the NHS was established on 5 July 1948. Such tinkering sped up during both New Labour and the coalition government of 2010 to 2015, with the widely regarded as disastrous reorganisation of the NHS into "clinical commissioning groups" (now reorganised further into so called 'integrated care systems") where clinicians who have little or no financial training or experience decide how the money allocated to their health area for which they are responsible will be spent.

The reforms that took place from 2010 to 2015 under the coalition government saw the Secretary of State for Health cease to have legal responsibility for healthcare.

And just like local councils, I understand that integrated care systems (formerly clinical commissioning groups) are required legally to balance their budgets each year.

The National Institute for Health and Care Excellence (NICE) whilst a good idea in principle, has always had an obvious weakness as far as consistency of delivery of patient care across the country is concerned.

NICE does have the power to mandate that particular drugs or treatments must be given to patients as part of its role in assessing "medical technology."

However, NICE also issues "guidance" on the most suitable treatments for a number of diseases, and it is here where the NHS postcode lottery begins.

Most of NICE's pronouncements are issued in the form of disease treatment "guidelines," and as any lawyer will tell you, in England and Wales "guidance" means exactly what it says, and it is not mandatory.

While NHS organisations are required to take NICE guidance into account when making decisions about treatments for patients, those organisations can consider the NICE guidance and choose not to follow it (though there might be consequences legally if they don't follow the guidance).

Which is why so many of the former clinical commissioning groups (now integrated care systems) have a discretion in the health areas they are responsible for not to pay for certain drugs, medical devices or certain treatments that might benefit patients.

If one is a patient living in an integrated care system unwilling (or unable) financially to spend its budget on a drug, medical device or treatment that one believes may be beneficial, and the patient cannot persuade the ICS to spend that money, after exhausting the NHS's own complaints procedures, the only recourse one has is to ask HM courts to make the ICS decide differently. Which is itself never easy (but not impossible) as the NHS retains - at significant expense - some of the leading healthcare lawyers in the country to fight such cases.

But yes, ultimately there is an NHS treatment postcode lottery because that is the way our elected politicians want it and they have structured deliberately the system to work as it does at present.

jaywak said:

I was told that I couldn't have a Libre because my type one was sufficiently well controlled that I wouldn't see any benefit from using one and thus costing the NHS more money for no benefit , which you have to say has a logic behind it .

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Not factual. They have been shown to save money which is why they have been fully recommended by NICE.
This morning on Twitter Partha mentioned 2023 as hopefully being the year for closed loops. The ultimate!

The best advice I can give you Danny is to just get a good Diabetic Nurse on your side, they are worth their weight in gold and will help you, you just need to try and build a relationship with them, explain how much work you're putting into it and what each day looks like, tell them about your DP too as this is a potential case for pump support too, the more they know about you the more likely they are to help, but you have to reach out to them.

Hi Danny - hope today goes well ?

Are you under the care of a diabetic nurse ? I have my DSN's email and although we don't talk much I have made myself well known to her and we communicate on email, so if I am having a bad time i'll drop her an email and she replies within a day, it's much easier than waiting for an apt or trying to ring her as she is so busy, like I said having this relationship with my nurse has made the world of difference in regards to how I manage my diabetes.

Well done for getting down to 12, you will adjust to lower levels if you do so slowly, but it's this type of effort that will make them sit up and notice you as they will see you can putting the effort in, they can only meet you half way on this so you have to do your bit.