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

[Cornflake57]

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.

 

[eggyg]

Sorry to be the bearer of bad news but the short answer is no. If you’ve multiple health issues these are dealt with ( or not in a lot of cases, I include myself in that) separate departments. I had my pancreas ( and spleen) removed in 2007. I’m insulin dependent now, and because of the operation I have a few gastric issues, these include adhesions from internal scarring, this has lead to me having a permanent partial bowel obstruction, I also have gastric dumping syndrome, it’s as grim as it sounds, this is also due to having had abdomen surgery, of course not having a pancreas means I can’t digest my food as normal, I take enzymes with every meal and if I don’t get the dose right, well, let’s say it’s not pleasant. To top all this off I also have diverticulitis. Juggling these conditions plus the diabetes is a blooming nightmare. In the gastric hierarchy there’s three departments, upper GI, lower GI and gastrointestinal. I’ve seen them all, there’s no coherencey ( if that’s even a word) between them, they just pass me back between them like a hot potato. My diabetes is never mentioned. I’ve never ever seen an endocrinologist in all these years, I go once a year to my GP surgery for blood tests, a nurse phones with the results. I’ve seen a doctor ONCE about my diabetes in the early days and he had to Google Type 3c! It’s frustrating I know, but the NHS is broken and can’t cope, it’s not personal, it’s the way it is. In a perfect world, we would have everything available for us at a moments notice. Just yesterday I was thinking, once again, should I pay for a private consultation re my various gastric issues? I could afford one consultation but could I afford subsequent consultations, scans etc, most probably not, and nor should I have to. In the meantime I look after my own health as best I can, nothing I have is life threatening per se, but if it was, I’m sure the NHS would step up as they have in the past for me. Frustrating and very annoying I know but unless you pay privately, you’d still have to see various different consultants I would imagine. Sorry the news isn’t better.

 

[Wendal]

Morning Cornflake and sorry you do not feel you are getting the care you require.Your essential point that NHS does not take a holistic approach to managing care which causes issues for anyone with complex medical needs is very valid imo and the system works by your GP acting as a conduit to then refer you on to various specialities of the system.
It is further compounded by the routine monitoring of GPs which are much more familiar with Type 2 rather than Type 1 plus given the financial state of the NHS which means their management of monitoring/ managing ongoing conditions if you are generally controlling them becomes less intensive and even can just disappear.
The system also concentrates on prioritising your most urgent condition which is your CKD rather than your diabetes so even though many of these conditions are linked there is no overarching umbrella department covering nephrology and endocrinology hence you fall between the stools.
Ii suggest if possible you try and learn as much about your diabetes as possible and manage your condition as best you can and concentrate on your CKD.
I know you should get the necessary support but unfortunately it is not always there.This forum is an excellent source of info and experience on managing diabetes and I wish you well in this difficult situation.

 

[helli]

In my case
- my GP manage my prescriptions
- there is a DSN at the local surgery but I am not sure she can spell "Type 1" let alone do more than read the questions in front of her. For example, she does not know how to read a Libre graph and has "never come across" an insulin pump. Despite this, she does a "diabetes review" twice a year.
- about once every 18 months I visit the diabetes clinic where I meet the endocrinologist, DSN and dietitian. For more than 15 years after my diagnosis, I would see a different endo on every appointment but I have had this one for about 4 years . I have had the same DSN since my diagnosis and she knows me and my quirks. The dietitian often changes but she rarely says anything and seems to be there to keep the seat warm.

The diabetes clinic is the only one who understands my diabetes but I get the 6 monthly blood tests as part of my GP surgery diabetes review to ensure I am still on the right track. I do not know what they would do if the blood tests identify any diabetes related issues (they have spotted things like low level anaemia).

Thankfully, I have no complications so do not need to see anyone else about my diabetes. However, in my experience, diabetes is not different to other conditions - I broke my elbow in the summer and I am currently under 3 different clinics for it. They don't talk to each other beyond scan reading my notes as I walk in the room and I have to advocate for myself and my diabetes when it comes to surgery.

To answer your question "who is responsible for your overall diabetes care?" I would say it is me.
I don't mind this - I am the only person who knows my life outside the clinics and I am the person who suffers if I get it wrong. Yes, this means I need to know enough to ask questions and push the point at times (thank you forum!) but diabetes is not a condition where we take the same dose every day for the rest of our life and that's it. So we need to keep an eye on all parts of our lives.

 

[JimmyBlue]

@Cornflake57 sorry to hear about your troubles but as @Wendal says the NHS does not review people's health holistically and that problem has much wider implications than just diabetes, women in general suffer because of this focus on individual areas of specialism. The way that doctors are trained is one of the issues as they are required to specialise quite early on in their careers and then move into siloed environments. A more holistic approach would be likely to improve health outcomes in my view.

My diabetes is managed, including prescriptions, by the Diabetes specialist nurses at the local GP surgery. They will recommend the medications I should take and the things I should consider in managing my diabetes. I only see the GP if there is a material issue identified.

Due to the regional boundaries, my treatment is split between two NHS trusts. One does my annual checks for eyesight tests and some of the other scans and investigations I needed. However the second trust is used by my GP to make sure that I get seen quickly.

 

[Satan’s little helper]

In answer to the title question. Just me & someone with the job title at my GP surgery of “practice pharmacist.”

 

[JITR]

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.

@Cornflake57 A very good question, and a very good discussion so far.

From my experience of T2 and hemachromatosis, I'd say everyone is bang on, not least @helli:

To answer your question "who is responsible for your overall diabetes care?" I would say it is me.

We won't get the NHS to change its fundamental model - 'We deliver to patients' - until we all take responsibility for our own health.

My suggestion, @Cornflake57, is you write down a 'holistic plan' for yourself to discuss with your DSN, GP and specialists. Adjust your plan and its targets as you go along.

Need help with the plan? Look no further than the members of this forum.

 

[digihat]

For the moment I'm under the care of the hospital diabetes team who have been dealing with any bloods/tests consultants. I've just had my last DSN visit they are happy with my current control. I did ask if I was going to be discharged back to my GP Surgery they said that might happen as things are constantly changing but not for the moment. They've told me I can reach out for help just by getting in touch again if needed baring the currently 6 month check in with consultant

GP surgery deals with prescriptions annual foot probably more will shift there I suspect.

 

[Barrowman]

I should consider myself lucky this year as for the first time since becoming a T2 diabetic my recent review was carried out by a DSN who was a diabetic as well. I was able to get answers
to all my questions and came away feeling that for the first time, someone knew what they were
talking about.

 

[nonethewiser]

Been fortunate enough to have been under a hospital diabetes clinic from start where I've had excellent care & support, gp surgery just takes care of prescription items & get notified by clinic when prescription changes need to be made, other than that get bloods taken at gp surgery 2 weeks before hospital appointment, that set up suits me just fine.

Also get seen in a Gastroenterology clinic every 2 years, have to do a round trip of 120 miles but don't mind as it's a good clinic & couldn't get into my local clinic at time of diagnosis as waiting time was long.

Really thinks it's impossible for all clinics to work together in nhs, it's just how it's set up, but nowadays all clinics should be able to access a patients medical records so should be aware of recent blood works complications & such.

 

[Cornflake57]

Been fortunate enough to have been under a hospital diabetes clinic from start where I've had excellent care & support, gp surgery just takes care of prescription items & get notified by clinic when prescription changes need to be made, other than that get bloods taken at gp surgery 2 weeks before hospital appointment, that set up suits me just fine.

Also get seen in a Gastroenterology clinic every 2 years, have to do a round trip of 120 miles but don't mind as it's a good clinic & couldn't get into my local clinic at time of diagnosis as waiting time was long.

Really thinks it's impossible for all clinics to work together in nhs, it's just how it's set up, but nowadays all clinics should be able to access a patients medical records so should be aware of recent blood works complications & such.

From my experience the medical professionals don’t read your medical records before or during your consultation unless you ask a specific question, and you are lucky if they read your referral letter. Once in my yearly review the HCA asked me what was the result of my HbA1c that had come back from my blood test a few weeks previously, my response was she should look at my medical records, her response she walked out of the room and didn’t finish the consultation.

 

[nonethewiser]

From my experience the medical professionals don’t read your medical records before or during your consultation unless you ask a specific question, and you are lucky if they read your referral letter. Once in my yearly review the HCA asked me what was the result of my HbA1c that had come back from my blood test a few weeks previously, my response was she should look at my medical records, her response she walked out of the room and didn’t finish the consultation.

That is bad, hope you reported them.

At very least they should read your referral letter as that explains why your there, surely.

 

[helli]

That is bad, hope you reported them.

At very least they should read your referral letter as that explains why your there, surely.

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.

 

[everydayupsanddowns]

Sorry to hear you are a little unhappy with the fragmented nature of your care @Cornflake57 .

I think that sort of decentralisation and spread of care across different specialists is quite common these days. Initially, when I was first diagnosed, I would see the same hospital clinic every 12 months and they would give me my annual review and check my eyes feet etc. Everything done all in one appointment. But as the decades have passed many services have been separated out including the national eye screening program which is now completely separate.

So for me, my GP handles my repeat prescriptions and also undertakes blood pressure monitoring, toe tickle, weight, and annual review blood checks every 12 months. Separately I now also attend a Pump Clinic (which the GP surgery has little or no experience of) and this again is an annual appointment. I try to keep them about six months apart, but invariably there is a bit of delay to one or other and it’s not uncommon for them to end up more like 18 months apart or coinciding together.

However, with your more complex condition, I can completely understand how concerned you must be. Though perhaps it could be some small encouragement that your kidneys are not felt to require very frequent checks. Presumably the annual blood test monitoring U&E / microalbumin for your diabetes annual review allows them to keep an eye on that?

It is many decades since I’ve seen a dietician!

 

[Bruce Stephens]

Just me & someone with the job title at my GP surgery of “practice pharmacist.”

I'm managed (have an appointment once a year with) my GP surgery. Most recently was actually the pharmacist. She'd obvious received enough training to do the required annual checks so I've not really any complaints. (She may have further medical training for all I know.) They've always been quite happy to refer me to specialist care if needed (I think a DSN visits the surgery once a month, but they're in a community hospital ~10 minutes walk away one day a week).

I think they're trying to make it that any GP can perform such reviews, but at least for Type 1 the quality varies quite a bit. It was only a few years ago I had a review where the GP really wanted to know how many hypos I had per week. I was using Libre so had no idea. I knew what percentage of the time I was low but that apparently wasn't what was wanted...

Realistically I'm not looking for much in those reviews except basic stuff (like the blood test results, particularly the ones I don't know about). It's an opportunity to look at any prescription problems, too.

 

[Satan’s little helper]

I'm managed (have an appointment once a year with) my GP surgery. Most recently was actually the pharmacist. She'd obvious received enough training to do the required annual checks so I've not really any complaints. (She may have further medical training for all I know.) They've always been quite happy to refer me to specialist care if needed (I think a DSN visits the surgery once a month, but they're in a community hospital ~10 minutes walk away one day a week).

I think they're trying to make it that any GP can perform such reviews, but at least for Type 1 the quality varies quite a bit. It was only a few years ago I had a review where the GP really wanted to know how many hypos I had per week. I was using Libre so had no idea. I knew what percentage of the time I was low but that apparently wasn't what was wanted...

Realistically I'm not looking for much in those reviews except basic stuff (like the blood test results, particularly the ones I don't know about). It's an opportunity to look at any prescription problems, too.

I actually do see an endo at a clinic once a year. Not the GP. The marker tests are from a nurse at the surgery though. The last couple of years I’ve been pushing for a pump. Since the Libre prescription all the endo looks at is the 90 day daily patterns on my phone? Though my HbA1c is in line with the guidelines (I don’t like to crow on my scores. Some here struggle.) I pushed for an HCL on hypo grounds. (Comes with the territory.) According to the endo I don’t get hypos. Go figure? He’s not concerned.

 

[Burylancs]

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 had a classic experience. After 10 years under the local hospital diabetic clinic I was released back into the 'wild'. Three years later my GP asked me, 'who is looking after your diabetes nowadays ?'

I said, ' you are'.

In fact I had a great team of me, a diabetic nurse and a pharmacist.

 

[Wendal]

Sorry to hear you are a little unhappy with the fragmented nature of your care @Cornflake57 .

I think that sort of decentralisation and spread of care across different specialists is quite common these days. Initially, when I was first diagnosed, I would see the same hospital clinic every 12 months and they would give me my annual review and check my eyes feet etc. Everything done all in one appointment. But as the decades have passed many services have been separated out including the national eye screening program which is now completely separate.

So for me, my GP handles my repeat prescriptions and also undertakes blood pressure monitoring, toe tickle, weight, and annual review blood checks every 12 months. Separately I now also attend a Pump Clinic (which the GP surgery has little or no experience of) and this again is an annual appointment. I try to keep them about six months apart, but invariably there is a bit of delay to one or other and it’s not uncommon for them to end up more like 18 months apart or coinciding together.

However, with your more complex condition, I can completely understand how concerned you must be. Though perhaps it could be some small encouragement that your kidneys are not felt to require very frequent checks. Presumably the annual blood test monitoring U&E / microalbumin for your diabetes annual review allows them to keep an eye on that?

It is many decades since I’ve seen a dietician!

Agree Mike you make some good points and only a complete review of the NHS would move towards a more integrated holistic system which would certainly imo benefit patients as well as prove much more cost effective but these silos will be very hard to break down.
I do feel at a more local level they can integrate services better and a routine appointment I have at Oswestry which is a specialist ortho hospital always works well with bloods/ bone density/ x rays etc all located close by and can all be done in 1 session.
With kidneys not only is it a major organ in itself but the way it is connected and integrated into the other major bodily systems means that its management will always be seen as a priority as opposed to diabetes and you make a good point that the less frequent checks are a positive.
Managing co morbidities is very difficult in the current NHS and as the population ages these will become much more common so this will present an increasing challenge to those managing these conditions and agree with Helli that the more you can do yourself then the better you feel but again appreciate that us much easier said than done but forums like this can really help provide sone of the info and encouragement required but of course never medical advice which always needs to be discussed with the relevant medics.

 

[AndBreathe]

I don't have T1, but have developed a couple of "interesting" conditions along the way. Again, nobody takes a global view of what is going on, so I promote myself to that position.

Officially, it probably means I have a life membership of the "Awkward Squad", but if I don't do it, I will be left fretting over those potential overlap areas.

Sometimes this means I have to repeat questions in appointments, like "what does that mean for.....?" when I don't get a response. Sometimes the response will be "I don't know. That's the job of X team", so I either task them to find out or to arrange an appointment (or phone call) to inform me. I don't give up.

It's tiring. It feels unnecessary and undesirable, but it is what it is.

Unfortunately, it doesn't always garner the desired results. For example, I was taking part in research (not diabetes) last week, but had an appointment for some monitoring tests (for the same condition) a couple of hours after the scheduled finish of the research slot. I checked beforehand if there were any implications for the tests, and was reassured not. Only then to find there were! You'd think a specialist medical scientist in that field might have had a clue. (Or were they just happy to kick off their study - I was participant 2).

Join me in the awkward squad. It generally works for me, but isn't 100%.

 

[SB2015]

My day to day care is down to me. My body - My responsibility, but I do get a bit of help from the NHS.
I am monitoring, checking, changing things as necessary, (along with some swearing, shouting at my pump, crying, laughing, …)

I am not dealing with other complex issues, apart from those that are arising as my age increases, so I do not have to juggle a mix of appointments, which I can see would be frustrating. I do see my GP practice as the conduit for coordinating my other issues through referrals, and I know that I can talk to him on the phone if necessary.

I am under the care of the pump clinic at my local hospital. My annual appointment is more realistically about every 18 months. I am also able to email the team when I have specific questions and glad that they are able to look at my sensor download to help in answering these questions.

For my blood/urine tests and the toe tickle I go to the GP and these are done around my birthday annually. These are followed by an annual review where I am fortunate to see the same nurse each time where I both update here on my current pump/sensor/looping as well as getting emotional support as necessary. Again I am able to get additional appointments if necessary. The nurses have longer slots and I have not seen a GP for a long time. I also get an HbA1c done in between the annual full tests.