Patient knows best

[Mrspat]

Rant warning! I take Digoxin, Bisoprolol, Rivaroxaban and Levothyroxine - the latter because Amiodarone messed my thyroid up. I have annual liver, kidney and thyroid tests plus Digoxin level test.

Last week I had the first three tests but the phlebotomist at the surgery had no instruction to do the Digoxin test. I asked her to check with the doctor, she said she would when one was free.

A few days ago, I ordered a repeat prescription via EMIS, noting that the dosage has not changed. However, I posted a comment about the Digoxin level test, querying whether it had been done and if not, should I have one. I collected the prescription this morning.

The surgery has just rung. Please can I make an appointment for the Digoxin level test. I wasn't abusive but I let the receptionist have both barrels regarding their systems. She agreed with me that, had I not made the comment on the form, drawing it to the doctor's attention, it would probably have been overlooked. She also said that phlebotomist has no discretion in ordering tests, whereas the practice nurse who sometimes carries them out, does.

So, always assume that you are the best expert in your own situation and never assume that the left hand knows what the right is doing. How do people less mentally alert get on? What a waste of NHS time and money. I have a feeling that nurse may be recommending blood pressure medication....

[meadfoot]

I feel your frustration. My husband had blood tests recently, no one made contact to say something was wrong. Today on checking he found a problem and went for repeat of a particular blood issue. Got to hosp and surgery had not requested anything so rang surgery who then had to get doctor to put them on the hosp request system.

Now apparently they have requested the wrong blood test and rechecked ones which was fine and forgot the one that wasn't. So back again tomorrow. It's our health on the line here the NHS system is in free fall.

I agree we need to be on top of it all all of the time. It's dreadful.

[10gingercats]

I am afraId you are right.The less mentally alert do suffer in these situations and I have plenty of personal evidence to prove it .Most of the problems of those I support elderly/frail/not mentally alerts friends have suffered more at the hands of the hospital appointments services and pick up ambulance services than at GP surgeries although some GPs are very 'sloppy' when paying home visits to the very elderly meaning they do not come 'soon' to visit or the patient has to ring,or ask another to ring, several times to get a visit.This is not universal but worryingly frequent enough to make you think it is not chance.

[Finvola]

Much as I detest the phrase, 'joined up thinking' is so badly needed at every level. I've just been told of an elderly neighbour sent to the area hospital for a scan on leg ulcers which were bandaged, only for her to be sent away 'because the nurses don't do dressings'. It doesn't matter what the detail of this incident is - it should not have happened.

Persuading my husband to follow up himself on his blood tests is usually a long discussion entitled 'they will ring me if there is a problem'.

Well done for being your own best health advocate.

[Hidden in reply to Finvola]

Can I ask if your neighbour has compression bandaging? If so not all nurses can do this. No excuses they can take dressings down do the test and contact tissue viability nurse in hospital or whoever provides that care in the community to re apply the dressings

[Finvola in reply to Hidden]

I don't know, frills but she took her replacement bandages along with her. She was widowed only last week and didn't need such a hassle on top of everything else.

[Hidden in reply to Finvola]

Bless hope she is sorted soon. A waste of her time and an appointment. Pity they couldn't think out of the boxes . Sad 😞😞😞

[dedeottie]

Recently my husband had a follow up AF appointment with an EP as due to a different electrical problem his flecanide had been reduced to the minimum dose. This had been discovered during an exercise stress test which he had been told he would have every few years while on flecanide to make sure it was safe to keep taking it. This time he saw a registrar who said that if all was well in a year he would be discharged so no more stress tests. My hubby was so glad to hear that, he forgot to remind the registrar of the consultants original reason for keeping him monitored. Good job he has yours truly to on the case!

Bizarrely, I have the same consultant and similar problems and yet I have regular stress tests regular appointments and an arrhythmia nurse to contact. Where on earth is the consistency? What care plan can they possibly be following? I am afraid my faith in any system is fading fast. You are correct when you say that we have to be our advocates and help others to be the same. X

[Mrspat]

I am trying to be positive and think how I can change this experience. I think my blood test appointment is with the nurse, who is very experienced and has been there a long time. I am going to a) ask her exactly what procedure I should follow when the review notice comes up on the prescription b) fill in one of the feedback forms on the surgery website and maybe c) contact someone from the practice participation group.

[Hidden in reply to Mrspat]

Get them to tell you what tests you need and frequency. Ask has follow up been set up on their system. As you say we as patients usually know what test is due and when. Digoxin levels as you probably know have to be done at 6-8 hours post medication so the phlebotomist prob couldn't just request the test.

[opal11uk in reply to Mrspat]

Take a notebook with you to record your visit, and keep this notebook for all of your medical issues, recording dates, whats said, what has to be done and so on, this will help to keep you on track and aware at all times. When I have hospital appointments with consultants I take all my notes with me including what I want to discuss on that day so I don't miss anything because I hate the feeling when I get home of 'I wish I had asked that question' and so on. I do so hate being out of control of my own destiny, I need to know whats going on and I also need to make my own decisions based on good solid information. I have only been drunk once in my life and now you know why, I have to be in control hehehe

[BobD Volunteer]

Phlebotomists from my experience are not nurses or have much medical training other than how to draw blood so maybe mark that one down to experience and make sure that you don't rely on them passing on messages. I share your frustration sometimes.

[CDreamer in reply to BobD]

I agree Bob but with respect, I don't think that is the issue - for me it is that there is no system or lack of education on how to use a system appropriately on follow up and follow through.

Every member who comes in contact with a patient sits in front of a computer with all patient reconrds on it. Sure the doctor has to order the tests but it is not beyond the capacity of anyone with access to patient computer records to put an urgent note on the file with an alert the GP can see and follow up on. Even the receptionists do that.

I see them do it in front of me and at the time whilst we are talking.

21st C and we are STILL relying upon paper records and people passing on verbal messages?! The complexity of medicine is ever increasing but the systems, especially hospital admin systems, are still in the dark ages but they are the foundation on which everything else is built.

[BobD Volunteer in reply to CDreamer]

I do agree about paper records CD but we must all accept the system we have however flawed and use it to our best advantage.

One of the biggest problems from my understanding is lack of joined up computer thinking exacerbated by patients' reluctance (quite rightly) to trust any government run system to be leak proof . Few systems seem to talk to each other. My brother in law made a good living out of software to allow different government systems to communicate with each other.

The idea a year or so back of unified medical records failed for the reason that nobody trusted it to be hack proof . When secret defence project laptops are left in taxis who in their right mind wants all their medical records available to any 14 year old hacker when potentially something in those records could be financially damaging to them.

We are going off track here of course and it is all pretty academic anyway. Spooksville knows everything about all of us anyway so why not use their computer. lol.

[Hidden]

As a phlebotamist myself who incidently worked in the coagulation clinic I can only say that in all jobs you get some who are good at it and some who aren't, usually when you have a permanent phlebotamist in a Doctor's practice you shouldnt have any problems if you have any queries as we have direct access to the doctors should we think it necessary and as well we get to know our patients which also helps, unfortunately the same doesn't always apply in hospitals because of the workload. You are right Bob that we don't have any medical training as such but we do need to be able to understand the medical terminology otherwise we couldn't do our job. I myself recognised that a patient of mine was having a stroke, he had only just been in to see his Doctor,I had direct access to his Doctor and thankfully an ambulance was called, he came in weeks later fit and well to thank me. Didn't expect to be on the other end of the needle though. 😂

[CDreamer]

I also feel your frustration and agree and have often commented that I don't know who controls the systems or designed them but they don't just leave cracks to fall through but wide open caverns you could drive a truck through!

At neuro last week I took a copy of my letter from EP to GP because I wanted to talk to my neuro about it for implications for my neuro treatment - ' Don't worry' he said 'it'll be in here' tapping my ever expanding paper file. After 5 minutes searching through it and not finding it he took my photocopy - and put it in the file.......

How do people who are timid, less able and less mentally alert manage - or maybe they don't?

[cassie46 in reply to CDreamer]

I had to get a copy of my Echocardigram last week via the GP - pleased to say they did not charge me for it - I was expecting a charge. What has happened to the wonderful system where all hospitals, i.e if you had to go to a hospital not in your area as A & E patient, would be able to access a patients details and files. That does not appear to work. Saw a EP for the first time yesterday at Papworth, I live in Peterborough not far away, had to go through all my details and paperwork with him. The two hospitals often work together why can they not comunicate!

[cassie46]

When I had my breast cancer op I was told at the hospital to go to my GP surgery the day after I returned home to make an appointment to have my dressing changed - told this would be fine and they would accommodate. I did this and receptionist said there were no nurses appointments for 7 days, that they cannot just fit patients like me in immediately. I said it needs changing tomorrow, she said there are no appointments for then. Fortunatley the senior practice nuse was nearby and overheard. She came forward and booked me in on her list for the next day. When I saw here she apologised for mixup, went to get a dressing and said I donn't have a large enough one. Luckily for me I had some with me that the hospital had given me. She did then squeze me into her clinic for the rest of the time that I had to have dressings changed.

I have had about four tests done in the last month via the GP surgery (all with the same GP). From previous experience they never ring you so have to chase up all the last four results. What does annoy me is that at our surgery you have to call to arrange a phone call back from the GP with your results.. Each time the receptionist has asked the reason for the call back, so state which test I am referring to. Each time I get the call back the first thing GP says - what can I do for you today - I feel like shouting my blooo$$$$$$ test results. She then proceeds to find them on the computer, reads them tells me five minutes later the results. It has been stated what the call is for I expect the GP to have read the results before she calls me and tell me immediatly.

Finvola - I have same prob with my hubby - they will ring back if anything wrong. I hope he is cured of this now as last time I eventually got to find out and there was some thing wrong.

Cassie

[CDreamer in reply to cassie46]

No system - and what a waste of a GP's time!

At our surgery they will ring back if there are issues - but I wouldn't rely upon it. There are no details but the receptionist will say if the tests are clear or if you need to come in to talk to the GP.

For a VERY short time we were able to see a short version of test results on-line. But there was some admin problems so that didn't last long.

I can get a print off at a small cost. I am sure this will change in time as more and more people start to take responsibility for their own health.

If you are following a nutritional protocol having your blood results is quite important.

[Kresta]

My cardiologist requested the digoxin level on my last lot of blood tests. I told the phlebotomist not to bother as I don't take it. She wrote on the request form that I refused to take it. I had to correct her. I have never been prescribed digoxin by my gp or cardiologist. Go figure.

[LindaDaisy]

You have to be so proactive now. I carry a spreadsheet with details of everything I can think of on it. Paramedics say it makes things so much easier and so do A&E staff apart from the odd doctor who dismisses it with a wave. On the wards I've seen so many elderly or timid people who really need an advocate with them. And as for joined up thinking, I'm the one that has to do that!