Standard of care.. annual check "doesn't exist"?!

[bethan90]

Sorry for the long story....
So I know care varies from health board to health board but I was wondering if someone could clear something up for me.

I am 22 years old, and have been diabetic for 10 years last month (congrats to me :wink: ). I was looked after very very well by the paediatric team at my local hospital until the age of 17. Since then standards of care have slipped big time. I was under a consultant who I have only met twice and every other time I was seen by his registrar due to overrun clinics etc. My blood sugar was very very unstable and erratic for years but nobody sat down and spoke to me about it properly. I would purposely run my sugars high at night for fear of going hypo overnight, I would have hypos I didn't treat correctly and therefore having a "rebound" high etc etc. Nobody gave me any decent advice and I was even put on metformin because they thought I was becoming resistant to insulin. I was on metformin for almost a year until my next appointment when I saw a dietician who taught me how to treat hypos properly and suggested I increased my lantus, and hey presto my blood sugars became stable. All that bad advice and unneccessary medication for something so simple :cry:

Anyway, more recently, in 2010, I contacted the hospital, frustrated that I had not seen my consultant(or any of his team) for over 18 months even though he wanted to follow me up 6 monthly due to being put on metformin. At the same time I also went to my GP to discuss coming off the metformin, and I ended up being put on their clinic list but was also told I would be seen by the hospital also. I have now been some how transferred to another consultant who is pretty useless to be quite honest. He did refer me to the dietician who has basically done the doctors job for him and given me all sorts of excellent advice regarding lifestyle and insulin adjustments. Meanwhile, I was recently seen by the GP practice a few months ago which I assume was my annual check up however I am not sure what blood tests they took and the nurse practitioner who was running the clinic didn't give me any results apart from my hba1c and saying my kidney function was "low a bit" and that my cholesterol hadn't come back so she didn't know if it had even been taken. She didn't check my feet or injection sites. The only thing she kept piping on about was driving with diabetes (which I have been told about many times!!).

I've recently been sent a letter to see my consultant (HOORAY, only 11 months late this time) and all it said was to take along my current medication. I rang the hospital to ask about blood tests etc that may need to be taken as I assumed this was my annual review, and she told me that they no longer did annual reviews and they no longer did annual blood tests???? I am unsatisfied by the blood tests my GP practice took, I'm not certain they were the full bloods, and even so they are 6 months old by the time I see my consultant. Is this true in anyone elses area? I feel so confused.

I'm sorry to rant and for the long post, but I feel soooooooo stressed about this and feel like I've been a bit abandoned health wise. I want somebody to thoroughly discuss my diabetes with me and not fob me off and go through the motions. Nobody has even looked at my feet since I was 15 years old! :x every appointment is the same "how are you?" fine "how many units of lantus are you on" 28 "how many units of novorapid" um well it depends "yeah but average" ummmmmm "how much for breakfast" etc etc. as soon as the essentials are written down it's cheerio see you in a year or two! so frustrating!

 

[bethan90]

Or... a quick version of this post: Have they actually scrapped "annual checks" as I have been told by my healthcare team?

 

[Neicy0412]

When I was diagnosed 15 years ago, I had two checks a year at my local hospital, my annual review and a "half way" one. My annual review was a full check up, everything was checked, my eyes, my feet, my injection sites, as well as blood tests, HBA1C, cholesterol, it was a thouragh overhaul, and my six month one was a scaled down version. I could visit the DN anytime, and she has always been available for support. Now though, I am supposed to have a review at my Docs every 3 months, visit the practice DN in between those visits, still have my bi-annual hospital reviews, retinal screening is done separately (every six months) I visit a chiropodist every 4 months!!!! It is ridiculous, my GP gives totally different advice to the consultant, the practice DN really seems to have no idea, I follow DAFNE and neither of them have a clue, my GPs parting shot at my last visit, " now remember if you go hypo just eat loads of sugar!!!" yeah right!!!! The absolute best are the hospital diabetes nurse team, they are the ones who teach the DAFNE courses, and are brilliant. I do feel a bit like a ball in a pinball machine, being bounced around from one HCP to another, the conflicting advice is maddening, and I work full time sometimes I feel as if my 2 days off a week are purely for hospital/doctor visits. I am all for good health care, and don't wish to knock the NHS as I feel very lucky to have have it,but is there any need? I would rather have a consistent level of care and support as I did at the beginning, instead of this constant to-ing and fro- ing and conflicting advice.

 

[CarbsRok]

Hi Bethan,
Sorry to hear you have been so badly neglected by the NHS.
GP surgery's have a tick box system all the nurse wants to do is tick a box so the surgery get paid for having you on their books (Extra).
Consultants and hospital DSN's............ Take with you a list of questions that you want answered. Go armed with a pen as well and write all the answers down as well.
Don't remove rear end from seat until you have answers

 

[Pneu]

I would just reiterate what carbs has said... unfortunately it is often the case that you have to fight tooth and nail to get the treatment that you want. Locally my diabetes clinic at the hospital is excellent but all the GPs I have tried have been poor at best! I would keep pestering the clinic until you find a doctor that you like and then try and stick with them.. if you are on the books at the hospital then you may be able to make appointments directly.. I would just ring up and try and make one every six months.. failing that get your GP to refer you.

 

[noblehead]

A week or two before your hospital appointment with the consultant ask your gp surgery for an appointment to have full bloods taken, as they are sent to the hospital lab they'll be uploaded on their system and your consultant will be able to access them when he See's you. Mention all your other concerns whilst you are there.

I don't get my bloods taken at the hospital although I am seen in their clinic, I just do as I've wrote above and discuss the results with my consultant during the appointment.

 

[CollieBoy]

A week or two before your hospital appointment with the consultant ask your gp surgery for an appointment to have full bloods taken, as they are sent to the hospital lab they'll be uploaded on their system and your consultant will be able to access them when he See's you.

Don't bank on it! My surgery can & will get the bloods tested but my consultant/hospital cannot access them :cry: :cry: , i have to pck up the results and take them to the hospital physically myself the trusts are incabable of sending data :crazy: :crazy: :thumbdown:

 

[persianlady]

I was diagnosed about 14 years ago, and had excellent care back then. Now I am wondering why the system has just fallen apart, as I don't get half the things done that I was used to The PCT in this area, Rhondda Valleys, South Wales, have cut so much of the care I was used to, and some of the checks that used to done - yearly hospital appointment, doctor checking between that appointment - and I am down to seeing my GP once a year, and no diabetic speciallist. I went to see my GP a couple of months ago, complaining of lack of energy, sleeping badly, headaches and also odd symtoms in my legs.
Well he did listen and arrange with the practice nurse to take bloods for testing, all 11 vials of blood! I got a call from the surgery to see the nurse again, as they had to repeat some of the test, which I did, and waved goodby to another 4 vials of nlood. I did ask why this was being done, and was told that one of the test results was a bit high and they wanted to run the tests again.
Well, I got an appointment to get the full results of the test, and to discuss what was needed, in view of some of the results. I was told that my kidney function was no so good, and I would have to have a scan, and maybe a needle biopsy, and then see a kidney specialist to explain what the problem is. I had the scan, no biopsy, and no specialist appointment to tell me what was going on.
When I saw the diabetic nurse at my GPs surgery, she said that I would have to have a kidney function test sometime soon. She also told me that the kidney function was diagnosed 2 years ago!! Nobody told me anything about kidney problems, neither the hospital or my GP. I then find out that is quite common for the kidneys to be affected, it is called Diabetic Kidney Disease, and you don't know if you got a problem until someone tells you.
Well, I amnot happy with the level of care I am getting, although I can't afford to see someone privately, so will just have to keep asking about anything else that diabetes may affect, and hope that I get the right answers.

 

[persianlady]

I was diagnosed about 14 years ago, and had excellent care back then. Now I am wondering why the system has just fallen apart, as I don't get half the things done that I was used to The PCT in this area, Rhondda Valleys, South Wales, have cut so much of the care I was used to, and some of the checks that used to done - yearly hospital appointment, doctor checking between that appointment - and I am down to seeing my GP once a year, and no diabetic speciallist. I went to see my GP a couple of months ago, complaining of lack of energy, sleeping badly, headaches and also odd symtoms in my legs.
Well he did listen and arrange with the practice nurse to take bloods for testing, all 11 vials of blood! I got a call from the surgery to see the nurse again, as they had to repeat some of the test, which I did, and waved goodby to another 4 vials of nlood. I did ask why this was being done, and was told that one of the test results was a bit high and they wanted to run the tests again.
Well, I got an appointment to get the full results of the test, and to discuss what was needed, in view of some of the results. I was told that my kidney function was no so good, and I would have to have a scan, and maybe a needle biopsy, and then see a kidney specialist to explain what the problem is. I had the scan, no biopsy, and no specialist appointment to tell me what was going on.
When I saw the diabetic nurse at my GPs surgery, she said that I would have to have a kidney function test sometime soon. She also told me that the kidney function was diagnosed 2 years ago!! Nobody told me anything about kidney problems, neither the hospital or my GP. I then find out that is quite common for the kidneys to be affected, it is called Diabetic Kidney Disease, and you don't know if you got a problem until someone tells you.
Well, I amnot happy with the level of care I am getting, although I can't afford to see someone privately, so will just have to keep asking about anything else that diabetes may affect, and hope that I get the right answers.

 

[bethan90]

That's interesting persianlady, although we would be under different GPs we may be under the same health board.

 

[tigger]

I'm in London and I get either 2 or 3 appointments a year at the hospital dependant on what I want (consultant offered 3 I said I'd prefer 2). When I'm pregnant I get significantly more. I either see the consultant or his registrar. I'm not bothered about which given my main purpose is just to check everything is ok. I've had type 1 for 29 years and know what needs to be done to get good sugars and what will give me higher readings.

The care is disjointed in that I'm seen by a consultant in one PCT but the retinal screening goes through my GP in another. It made no difference in linking up care when I was in the same PCT for both and neither GP was ever able to give the hospital blood test results or get them from the hospital. I am now back to only using the hospital for blood tests as current GP after insisting it would be much better for me and them to have it done at them made it so difficult and then tried to charge me for the pleasure of printing out my results!!!! I haven't had my feet checked in years. On the other hand they look fine to me!

Generally if you are persistent enough with the NHS you get somewhere. If you have a hospital number and an appointment just keep calling the appointment line asking for earlier appointments and you may get one. I also find being very nice and sympathetic to receptionists can work - but not GP ones who are :evil: IME

 

[diabetes51]

I am sorry folks but things are probably going to get worse from April - why? because GPs will be in charge of budgets. They will be wanting to do checkups. blood tests etc and pay themselves for it. However what they do have to do is meet competition rules - both UK and EEC rules, which means they should be putting out care for Type 1 diabetics to tender. I think as people integrating diabetes into our lives, we have to fight for the best rather than the cheapest care. So if your GP is on a community care group, ask what these secret societies are doing about diabetes care in your local community.

I wrote to the dept of health some time ago, complaining that neither my GP or DN in the GP practice has undertaken a course in insulin administration and assisting customers to manage their diabetes. (Please remember - GPs are private practioners, that makes us their customers NOT their patients. Start thinking of yourself as a customer and you get a different attitude and start thinking about your needs and rights). Guess what I was informed of by the dept of health. That unless I had serious complications I had NO RIGHT to see a consultant, that GP care was adequate. When I wrote back again and said that if that was true, I had every right to expect a GP to be up to date in diabetes care and his advice to be research based. I pointed out that most GPs and DNs are qualified (supposedly) to care for people with Type 2 diabetes but not Type 1. How do I know this, I helped run courses in Type 2 diabetes in the area in which I lived and worked as a Senior Lecturer in Nursing. I have checked and no courses in Type 1 have been run in the last few years, which is when I have noticed GPs have started taking over on the quiet - mainly for bonus payments. They responded by saying that they realised there were shortcomings in this area in GP training but they were making moves to remedy that. So - they know GPs are, on the whole, poorly taught about Type 1 diabetes but we should shut up and put up with it until they get around to altering their training.

Most Drs see very little of Type 1 diabetes in their training, unless their medical secondment is to a specialist team. This does not happen to most. The dept of health admits that the GP training is inadequate in this area. So for goodness sake, who decided GPs were suitable to act in a specialist role, without at least examining their knowledge, attitude and skills. Were organisations such as diabetes UK and other patient organisations consulted about this?

I just wish other people would write to the dept of health re this, as they seemed to think I was just being an awkward old woman.I presume diabetes UK are pushing at the government about this, insisting that GPs are adequately trained to look after Type 1 diabetics before being allowed to take over the care. I will keep complaining and writing until something is done, and people who last had training in the 1980s are NOT seen as suitable to advise on my care.

End of my rant!!!!!!!