Who is responsible for your overall diabetes care in the NHS?

[rebrascora]

I am under a consultant at the diabetes clinic. Since Covid it has been a 10min phone appointment about once a year and to be honest I haven't really needed even that because this forum has provided me with the knowledge and experience and confidence to manage my own diabetes well. I get 6 monthly blood tests at my GP surgery, but really Libre provides me with the data I need to manage it day to day and I just order whatever repeat prescriptions I need via my GP online system.
I had my first in person appt on Christmas Eve last year with a new consultant and he was very happy with my results but has made a follow up appointment for the end of April. Just got my copy of the report from that meeting and I am gobsmacked at the amount of detail from that 10-15min appointment and how well he has picked up on all the issues we discussed. Really, really impressed!

 

[Flower]

My diabetes care is from a consultant at a pump clinic plus my own knowledge, experience and the occasional bit of mystic trial and error. I go to the pump clinic about every 18-20 months and discuss any issues with pump settings, test results, change of insulin etc. This arrangement is fine by me, I'm fortunate to have a great DSN I can email about anything between clinics. My prescriptions are from my GP and generally work well apart from items I use infreqently but do still need as a back up being removed.

Complications wise is where any holistic joined up thinking stops. I'm trying to find my way through a patchwork of services both NHS and private to try and save my leg. The advice for diabetic feet is to have regular checks, seek advice immediately but podiatry seems to have suffered badly getting back to a good service since Covid. I can be seen when I have a wound and for the last 8 months I have an ulcer so I'm seen weekly for just that but the rest of my high risk feet destroyed by the same complication are deemed personal care and I pay privately for skin checks, nails, broken skin etc. The whole of my leg is under threat of amputation but my feet are somehow divided up in to NHS and private treatment. It scares and exasperates me and is the complete opposite of holistic.

I'm partially sighted due to proliferative retinopathy and the hospital care for that is fantastic. I'm seen regularly at a retina clinic for scans and checks, also seen at a low vision clinic which is great for advising on any tech or aids that can help. I go to a hospital contact lens clinic which is again a great service.

My aim is to try to keep on top of it all as much as I can but it does weigh heavy hoping I make the right call at the right time.

 

[AndBreathe]

I am under a consultant at the diabetes clinic. Since Covid it has been a 10min phone appointment about once a year and to be honest I haven't really needed even that because this forum has provided me with the knowledge and experience and confidence to manage my own diabetes well. I get 6 monthly blood tests at my GP surgery, but really Libre provides me with the data I need to manage it day to day and I just order whatever repeat prescriptions I need via my GP online system.
I had my first in person appt on Christmas Eve last year with a new consultant and he was very happy with my results but has made a follow up appointment for the end of April. Just got my copy of the report from that meeting and I am gobsmacked at the amount of detail from that 10-15min appointment and how well he has picked up on all the issues we discussed. Really, really impressed!

There are some very bright people out there. It's always a joy to encounter them.

The Endo I see for my errant thyroid has always taken an interest in my diabetes. Thus far I'm winning that bet.

 

[Rosie9876]

I have been living with diabetes Type 1.5 and insulin dependent since 2006, and I am becoming increasingly concerned about the way diabetes care is being managed within the NHS. Given the complexity of diabetes and its complications, I strongly believe that care should be handled by a specialist diabetes team rather than being fragmented across different departments, consultants, and my GP.

Currently, my diabetes care is disjointed:

My GP manages my prescriptions and routine checks but is difficult to access and often unavailable.
There is no diabetes specialist nurse (DSN) available, only a pharmacist.
There is no dietitian support, which is crucial for managing diabetes and its impact on kidney function.
I do not regularly see an endocrinologist at my local hospital. In the past, I have seen one, but appointments have only resulted in minor insulin adjustments.
I was previously seeing a nephrologist twice a year for my chronic kidney disease (CKD stage 3), but as my condition is considered stable, these appointments have been stopped even though CKD requires ongoing monitoring.
Given my complex health situation, I am now questioning whether I am receiving the right level of care. There is no joined-up approach when it comes to managing diabetes and its complications. I feel lost in the system and let down, as it has become a struggle to ensure I receive the appropriate treatment. My concern is that different specialists do not fully understand how their decisions (or lack of action) impact a diabetics overall health. The more I learn about my condition, the more I realise that I have not received the best possible care from the NHS. There should be a dedicated, multidisciplinary diabetes team responsible for coordinating care across all affected areas, rather than patients being sent to separate departments that do not specialise in diabetes.
I would appreciate your advice on how you feel diabetics can access more specialised and coordinated diabetes care. I would also like to know if there are any pathways to be referred to a dedicated diabetes team in the NHS rather than relying on multiple specialists who are not working together to manage this condition effectively.

I can relate to this. I've had T2 for a LONG time. This past October, I came to a crisis point when I was refused an urgent operation because my A1c was too high. Only then did I set about teaching myself about my condition. I learned more reading up and watching YouTube and latterly this forum than in years of NHS care.

When I was first diagnosed, I was referred to a diabetes clinic. Advice was frequent small meals with carbs at each and low fat. After moving, the new GP practice had in-house treatment.

The GP diabetic nurse dismissed tingling feet and claw toes as well as edema which should have been alarm bells. I kept getting an all-clear apart from high glucose, for which my medication was increased.

My GP refused to refer me to a podiatrist. One I went to privately just cut my toenails. My foot problem was only confirmed when I went for a pedicure and they refused me because of the state of my foot, including my big toe being infected. Even then my GP did nothing and said I'd only be referred if I lost sensation. NHS policy.

My routine A1c tests showed my diabetes was poorly controlled, but as my BMI was near normal, i wasn't clear what to do.

Fast forward to now, I am controlling it, with a long way to go. My A1c is going down, now from 88 in October to 50, so nearly prediabetic level, and I am having the operation. Worryingly, the hospital endocrinologist, WITHOUT SEEING ME, prescribed additional medication to lower my blood sugar. My GP ignored the letter from them, and I'm happy to leave it at that.

I feel foolish that I wasn't more proactive earlier, as many on this forum have been.

It's not just diabetes. I also had an ankle injury ineptly handled. The NHS would only X-ray it - it's cheaper - and both a physio and A&E advised me to exercise and walk on it. Torn ligaments and tendons got worse. I eventually paid for a private MRI.

There are many excellent, devoted medical people in the NHS, but it is underfunded, there is too little attention to prevention and too much wrong. But I think it's improving. After years of being told I don't need to test my glucose, I've just been sent a CGM.

 

[nonethewiser]

I have little expectation my records are read beforehand. If I am lucky, they could be read during my appointment.
I don't believe it is intentional bad behaviour. I don't believe they have time for appointments, let alone time between appointments to prepare.

I had a recent case of my Doc insisting on seeing me face to face as a routine blood test flagged anaemia. I went in, he asked a few questions, did a bit of prodding, scheduled more tests and then as I was getting more and more concerned, he thought to ask if I had recently had any surgery. At the time, my arm was in a sling and the details of my last surgery on it were in my records (I had seen it on the NHS app). Clearly, that was the explanation but he had wasted my time, his time, NHS money and made me unnecessarily anxious because he didn't have time to fully prepare beforehand.

Find with consultant appointments they are more informed when it comes to checking blood results scans before appointment commences.

Totally get what you mean about gp appointments, our practice only books 5min appointments unless you specify you want longer which is then 10mins, rarely you get to see same gp as locums are frequently used, so notes possibly ain't read or it's just a quick flick through. Compare this to decade or two before where there was some continuity with your own named gp

Nevertheless NHS is a great institution despite its faults here & there.

 

[pjgtech]

Interesting discussion....
For me, my Diabetes was initially flagged by my GP surgery after a routine blood test. They have a DSN, and everything has been through her, I have not seen a GP, even though presumably a GP signs my prescriptions? The DSN seems to know her stuff, she allowed me time to try to deal with it via weights loss and diet, etc initially. Later she referred me onto the T2D pathway to Remission scheme, and I am grateful for that, as I knew nothing about it at the time.
A couple of times early on when I rang the surgery with queries, either the DSN or a pharmacist rang me back, again, not the GP. Cannot remember the last time I saw a GP, was literally years ago!
Its a cliche I know, but health care generally, and diabetes especially, does seem to be a bit of a post code lottery!

 

[SB2015]

A couple of times early on when I rang the surgery with queries, either the DSN or a pharmacist rang me back, again, not the GP. Cannot remember the last time I saw a GP, was literally years ago

In most Practices the nurses who specialise in diabetes know far more than the GPS so it doesn’t bother me not seeing the GP. They are there for the general stuff and to join the dots, but when I need help with managing a specific condition I want the help from those in the know.

 

[Standup]

I keep getting so frustrated about the lack of a holistic approach or even a 'lead' where there's several teams involved. I had pancreatic cancer and the surgical team is at one hospital which isn't my local health board. The oncologist is at a different hospital and health board. Diabetes clinic is my local hospital and health board. My blood results had some abnormal numbers for my liver and my GP actually asked me who to contact - turned out to be the Upper GI dept at my local hospital who I'd never been seen by. More recently the GP commented on my low white blood cell count and the oncologist separately mentioned enlarged lymph nodes. It took me to raise the question of lymphoma which the GP didn't consider as didn't have access to all my scans and the Oncologist didn't because they specialise in different tumours. Anyway now been referred to Haematology at another hospital as none of the existing teams have the right knowledge.

Each team is great in their own way but the structure and nature of the NHS can actively work against a diagnosis. No one can tell me why Wales needs so many health boards who struggle to share information. I know some people who worked at a senior level in NHS Wales who said there had been many attempts to remove all silos but Hospitals and staff actively fight against it as the culture means they feel localisation is the best approach although it does feel there's an element of 'not invented here' and empire building.

Diabetes care seem equally disjointed. GP does my prescriptions but when I asked about changing CGM was told not their decision and it was all done a Health Board level. Hospital Clinic doesn't have access to my libra nor my eye scans despite the optician referring to them because of some concerns they had.

Trying not to go on too long here 🙂 but it does feel that funding isn't necessarily the biggest problem facing the NHS.

 

[trophywench]

FWIW - and this is England - I was referred to Haematology by my GP surgery because my Diabetes Consultant asked them to do that, since because my HbA1c result had shot up from my 52 - 54 for the previous 20 years they'd done repeated 'Full Blood Counts' over a couple of years every 3 or 6 months and was found to have an unusually high white blood cell result, and lymphocytes, which wasn't reducing so - what was going on? I expected to have to explain everything to the Haematology dep't - but I didn't - the consultant - a lovely lady! - had taken the trouble to find out shedloads of things before I got there. This, by the way, was at The University Hospital Coventry & Warwickshire, because the university Medical School is situated (in the main) within University of Warwick which is physically situated in the outskirts of Coventry, no way is it in Warwick! I also had some more blood tests - which they do not even send across to the Hospital Pathology Lab a few hundred yards away. Most of the tests they need are done specifically within the department BUT one she needed for me had to be sent off to the 'Hub' in Birmingham. I know a senior phlebotomist at Cov hospital and she explained that certain specialised tests are cheaper and quicker to do 'in bulk' so in more recent years, regional hubs have been set up, depending on what the tests are, as to where they get sent and how long it is before the results are available. Turns out I have something called Chronic Lymphocytic Leukaemia - always known by the medical profession as CLL.

Swollen lymph nodes is definitely one effect of CLL but there are tablets which can be prescribed, should it be that. Have a look at the Blood Cancer UK website for info.

And - jolly good luck and hope it all goes well for you.

 

[Standup]

FWIW - and this is England - I was referred to Haematology by my GP surgery because my Diabetes Consultant asked them to do that, since because my HbA1c result had shot up from my 52 - 54 for the previous 20 years they'd done repeated 'Full Blood Counts' over a couple of years every 3 or 6 months and was found to have an unusually high white blood cell result, and lymphocytes, which wasn't reducing so - what was going on? I expected to have to explain everything to the Haematology dep't - but I didn't - the consultant - a lovely lady! - had taken the trouble to find out shedloads of things before I got there. This, by the way, was at The University Hospital Coventry & Warwickshire, because the university Medical School is situated (in the main) within University of Warwick which is physically situated in the outskirts of Coventry, no way is it in Warwick! I also had some more blood tests - which they do not even send across to the Hospital Pathology Lab a few hundred yards away. Most of the tests they need are done specifically within the department BUT one she needed for me had to be sent off to the 'Hub' in Birmingham. I know a senior phlebotomist at Cov hospital and she explained that certain specialised tests are cheaper and quicker to do 'in bulk' so in more recent years, regional hubs have been set up, depending on what the tests are, as to where they get sent and how long it is before the results are available. Turns out I have something called Chronic Lymphocytic Leukaemia - always known by the medical profession as CLL.

Swollen lymph nodes is definitely one effect of CLL but there are tablets which can be prescribed, should it be that. Have a look at the Blood Cancer UK website for info.

And - jolly good luck and hope it all goes well for you.

Thanks Jenny, good to see that it can all join up in some places. I have low white blood cell count so possibly not CLL if the marker is high. It can work as I've had CTs and PETs at lots of different hospitals as my local one was busy but somebody obviously did a ring round and came back to me with a couple of options. I know the NHS is massive but there's small things like one hospital didn't use your NHS number for reference and created their own unique identifier which of course means nothing to the other hospitals - why?

 

[trophywench]

Every hospital in England does that, or at least, always used to, simply because their filing systems were entirely different from each other - and were mostly also frankly B awful. We were all allocated an NHS number basically from birth and each member of a family had their own Medical card so when you left home, went to live elsewhere and needed to register with a new GP, or dentist - you arrived with your Medical card in order to do so.
(My number was MOSK and 3 numbers - I remember the MOSK because since I was little and old enough to find out what a mosque was it bemused me cos I was christened and brought up Methodist - so that was silly! 🙄 )

And then you go to a hospital for whatever reason - and another number.

Then you start work and so an NI number and a Tax code and if it's a big place an employee number. Even if your job has a Grade, that's probably a number too. And your Bank Account.

Chaps in the main don't usually change their last name - but shedloads of girls have and still do - and if you think different numbers is bad ........

 

[JITR]

... if you think different numbers is bad ........

I have some experience of this. You may recall that, about 25 years ago, the Government set up a project to introduce electronic patient records. It was an expensive failure.

The Government started by splitting the country into five regions. They contracted with five American companies, each to install their system in one of the regions.

Some time later I was a guest at a meeting attended by the Government, the NHS, several quangos, and the five companies. At half time I asked one of the attendees what he did. He was employed by one of the companies to coordinate their system with the other four. I asked how often he met his counterparts. Answer, 'Never'.

As Americans say, 'Go figure'.

 

[trophywench]

Ah - that's because the NHS is run as a pat of the UK government.

When you are a government you deliberately never allow one department have anything much to do with other departments for the reason that if A finds out too much about B - before you know it the departments have been amalgamated and Oh-Oh - that's how the overall downfall starts .......

To a certain extent I agree that 'The Government' needs to be careful with info, but ........