Appointment times... for newly diagnosed

[Einstein]

A friends daughter has been 'falling over' for sometime now, after various blood tests, the doctors last call was to test for diabetes (why don't they draw off a load of blood and do all the common tests? Must be cheaper in the long run, faster and less stress for the patient.)

However, the results came back and the letter from the surgery duly arrived, paraphrased (but not too much too)... 'Your tests indicate you're diabetic.... we've booked an appointment for you to see the practice diabetic nurse in 4-5 weeks time'.

I was staggered an HbA1C wasn't given, although today to them it wouldn't mean too much, the friends daughter is mid-20's, I am staggered that the presentation to the doctor is 'she falls over/faints' has laboured such a laid back approach.

As for waiting 4-5 weeks to see a specialist nurse in the practice - surely there must be guidelines on how long you should expect to wait, event if you're HbA1C is only just over the positive diagnosis threshold?

Needless to say I've written down all she needs to ask, get clarification on and has as her right as a diabetic.

Whats the experience of others on newly diagnosed appointments?

 

[Northerner]

Hi David,

Sounds pretty poor to me, especially with such severe symptoms as passing out! Might be worth getting some ketone test strips and a meter so your friends can get a better 'picture' of how severe things are. Mid-20's might suggest Type 1 - does she have any other 'classic' symptoms?

I certainly wouldn't want to wait 5 weeks if it was me. As it happened, I ended up calling 999 as I got DKA, but with your friend I'd worry that this might end up her fate - fainting is rather more severe than drinking/needing the loo. I'd definitely want action within a week, and would book an appointment with the GP and ask to be referred to a clinic.

 

[Einstein]

My thoughts entirely Northerner...

I just didn't know the current waiting time, their whole approach seems very laid back, perhaps backwards to me.. ok, we're in the West Country, but!

Your reaction on pushing to get this brought forward was exactly the same as mine, funny how people don't like to push healthcare professionals to get what they, they patient needs!

My findings are if you know what you're entitled too and tell them, you get it, if you just sit back and wait they will rarely offer it.

 

[grovesy]

I was diagnosed 5 years ago and had impaired glucose tolerence for 40r5 years before that and I had a phone call and not a letter.When i went on Metformin at the begining of the year I got the results my self at work and rang up for an appointment, was going to be offered a couple of weeks till i said I need to go on medication and got one quicker.

 

[Sugarbum]

From my diagnosis at the GP (referred me to the hospital clinic) I waited almost 3 months. I am type one as well, which on reflection I think I was lucky to not end up in serious trouble. I trudged around with BMs of 27-30 for all that time. Working downstairs from the department, my boss tried to get me the appointment earlier and so did occupational health. Looking back on my history, my DSN explains I (luckily??) had a very gradual onset which probably saved me during that time. I was very suprised it took so long (big London hospital). I felt like complete c**p during those months I can tell you.

Going back to your friend, I am extremely shocked about her point of diagnosis being a letter. Is that acceptable? If that was a member of my family, I would certainly like to think not.

 

[Caroline Wilson]

My diabetic care is with my doctor where it is very difficult to get an appointment. Last time I went to my doctor it took two weeks to get an appointment, I was kept waiting for nearly an hour. When I finally got in to see him I was so cross and furstrated I burst into tears. He immediately said I was depressed and gave me what I realy wanted, two weeks off...

 

[Einstein]

Glad to know the plans sometimes work Caroline!

I think the appointment system is terrible, my practice first of all wouldn't allow you to book appointments more than four days in advance, now, to see a named doctor it can be a couple of weeks. To be fair if I can see any doctor on the team within a day or so, or on triage sooner.

It's all about massaging figures and waiting lists - too little is about considering the patient in all of this.

 

[circe]

newly diagnosed

Had no idea that passing out was one of the signs of high sugar levels. Does anyone know how high they have to be for this to occur ??? Before I was diagnosed I passed out during a bvery long flight . It was horrible . Could it have been connected with diabetes ???

 

[brightbaby]

I guess I was lucky. I was admitted to hospital with an infection and if the admitting nurse hadnt tested my blood sugar levels then I wouldnt have been diagnosed as diabetic. I was lucky and started treatment right away whilst in hospitail and with follow up appoints every week for first few weeks and then Ive got a hospital appoint with specialist this week after only been diagnosed 8 weeks ago

 

[allisonb]

This is way too long. It might be worth contacting your local PCT to let them know that appointments for newly diagnosed diabetics are taking this long! I work in a PCT and if patients don't tell us about problems we can't help to solve them.

I live in Sheffield and when I was diagnosed over six years ago I went to my GP on a Monday because I had classic symptoms, I had an urgent blood test that afternoon at the hospital and by Wednesday had seen my diabetic nurse and was taking insulin.

 

[Einstein]

Hi Allison,

Good comment about informing the PCT, I was shocked when I was told it was such a long wait, didn't seem at all acceptable to me.

The reason the for the post wasn't for advice, more to see if there is a problem with inital appointment times in other peoples experiences. It's bad enough such a high proportion of the population is walking around unaware they have diabetes, that when someone is diagnosed they have to wait over a month to begin treatment of any sort, be it diet, tablets or insulin.

I understand a phone call was being made this morning to speed things along.

 

[Corrine]

Hi Einstein

My Practice Nurse called me at work to tell me when I was first diagnosed (which was a Thursday)....which resulted in me going into a complete state of shock. I had to have another blood test on the Monday and I made an appointment for a week after that. All I wanted at that stage was to know that I was doing the right things (and thanks to Diabetes UK for their site - I scoured it for days). At that point they said they would write to me with dietician, retinal scan and chirpody appointments which took another couple of months to get done. I did feel that once I was diagnosed I had been left in the lurch somewhat with various looming appointments and not really getting any support in the meantime. Although my GP has a Diabetes Surgery on site I still felt that it wasn't really joined up - they were telling you what you had to do without really explaining why which I thought was difficult to get to grips with. I still don't know who my diabetic team are and when I asked who I should be making future appointments with (after my blood test this coming July) I was told to make it woth the Practice Nurse and she would change it if she felt it was necessary. I am diet and exercise controlled at the moment and so just have to pee on a stick if I think I have been particularly indulgent, and again, was just told to make an appointment with the nurse should I get any positive readings. So its like they have the process and the team but a lack of underlying individual support!

 

[allisonb]

Hi David

You're right, it's absolutely not acceptable but I do feel strongly that we shouldn't have to push for the quick treatment that we're entitled to. A conversation with the PCT might benefit others too as they may not be aware that there's a problem in a particular GP practice.

I had a problem with my local hospital taking me off their review list a few months ago. I had been up all the night before my appointment with d&v and thought it was unwise for me to go into a hospital and risk spreading my germs so I phoned to say I couldn't attend. As you can never get through to clinics I left a message and asked them to phone me back to rebook my review. Nobody phoned back and a week later I got a letter from my consultant basically saying that he'd taken me off his list as I didn't attend for my review. I was furious as I then had to go to my GP and ask to be re-referred. I made sure that people at the PCT knew that this was happening and they're now looking into it as obviously many people might just fall out of the system!

I hope it gets sorted and she gets seen soon.

 

[Adrienne]

Hi

This is ridiculous. I am presuming (and probably shouldn't) that this lady in her 20's will be type 1 (could be wrong). I agree get the ketone sticks, this could be a dangerous situation, as we all know. DKA happens very very very fast and within hours of being ok and 'just falling over' much much more serious things could happen. I certainly wouldn't wait the 4 to 5 weeks. I know my friends would all recommend going to A&E immediately. It would also be good to get her a test kit and start doing some tests, at least that way they would know the levels. One friend's son nearly went into DKA with levels of only 14.0 odd so not excessively high infact.

I am very cross on so many levels with this one. This is very very very poor care, my heart goes out to this young lady.

 

[sofaraway]

I think she should get an appointment staight away to see her GP so that they can confirm which type of diabetes she has, in her 20's I would think it's more likely she will have type 1.

When I was diagnosed i went to the hospital for a GTT in the December and was told I had diabetes Febuary, so for me it was ages waiting. I still think they shoudl have rang my mum to tell her that I had diabetes and it would be discussed more at the consultant appointment.

 

[Einstein]

Agreed, my own experience was completely different, I had my GP receptionists chasing me, 7 answerphone messages in the space of 3 hours - pity I wasn't home!

But my treatment speed was very quick - as it was a Friday, it was where are you and how soon can you get to the surgery...

I look at the sruvey results of the PCTs on the diabetes UK web site and wonder who dreamed these answers up as I am sure they are not a true representation of what is actually happening on the street.

 

[HelenM]

These stories horrify me and I certainly think that she should push to see someone quickly and be aware of the symptoms of DKA. If necessary she should go straight to A&E.
My Story
Go to strange GP tell him that I think I'm diabetic, he looks at me strangely ( I was 52 but was less than 8st at time so he didn't think I fitted profile)However ,after I've told him history he sends me for fasting test next morning.
Results (fasting 360mg/dl ie 20mmol) faxed to doctor, GP phones me to come straight in. Whilst in his office GP phones hospital and tells me to go there. By midday was on an insulin pump to bring levels down.
Sadly, this wasn't in the UK.
When I was in the UK, I always defended the NHS and had never has any problems. Now, because of these accounts, and also because of my own experiences whilst caring for my parents these last couple of months I'm a bit scared of coming back .

 

[kincaidston]

Personally i'd tell her to go to casualty straight away and get them to sort it out, its proabably what she'll get told in 5 weeks time anyway - that way there is a chance of getting into the hospital system and a properly qualified consultant and not the doctors i don't care but i want the money system.

 

[Andy]

I feel awful listening to the length of appointments on here lol. I was diagnosed just under 3 years ago prior to a shoulder operation and blood tests revealed that I was diabetic for which I am now starting to inject insulin.

Anyway, I can only say that the service I have received from my GP Surgery and hospital has been superb over the 3 years or so. Initially for the first 9 - 12 months I was being seen and checked every 2 weeks by my GP (it was me who was getting hacked off with too much treatment lol).

I started off on half a tablet of gliclazide and am now just under 3 years later taking 3 x 850 metformin, 4 x 80 gliclazide and one injection of lantus per day and still being regularly monitored to the extent of being telephoned every couple of days while I bed in with the Lantus.

It is a shame that not all Trusts are as good or offer the same sort of service.

 

[Einstein]

My personal experience, the same PCT as my freinds daughter, but a good many years ago, was quite different.

A forward thinking GP who had no problem admitting where his limitations were and defending the best interests of his patients, together with a holistic approach to healthcare - if he got me fixed at the earliest possible opportunity, then there was less chance in x months or years I'd still be going back, putting a drain on his time and resource while he faddled around bluffing me, it always seemed a realistic and sensible approach.

Prevention being better than cure.

I wonder where the NHS has lost sight of this phrase? With limited funding for DAFNE courses, newly diagnosed training etc. Surely someone needs to wake up and realise fudging this years budget for training or preventative care is a very short term gain compared to the horrific costs waiting due to complications through poor management in the years to come?

It's about time these people are held to account, they are having our money thrown at them and clearly don't have the best interests of our health, future wellbeing or any regard for the money we all pay in taxation and National Insurance to keep them in a job, while they fail so many of us. When will we see a return on the investment these people are supposed to make on the behalf of the nations health?

I am certainly of the opinion that they don't have a clue how to run very much and wonder if perhaps it isn't time to bring some visionaries in from the commercial world, not to slash budgets (hence visionaries - a sight of many plains and levels, not just the short term numbers). People who can look at a budget and a forecast, one, three, five, ten years plus in advance and realise the investment needed in the short term for the return in the long term.

Economics and comprehensive health management can and must work and exist side by side.