NHS shutting me out?

In early November, I called 999 and was sent to hospital after a severe bout of palpitations (which I'd had sporadically for around three years prior to this event). Once there, a cardiac nurse told me she thought I had AFib or Atrial Flutter after looking at ECG's; a huge shock to me as I'd put it down to anxiety before.

They arranged for me to have an echo-cardiogram to rule out any other potential causes, this was due to take place in early December. I couldn't make this appointment so I called them up informing them as such and asked if they could re-schedule my appointment, which the woman on the phone said she'd do. Over a month passed and I was becoming concerned as I hadn't received any correspondence from them. So I called them, but they kept transferring me to different departments. This happened about 8 times (I ended up being transferred to the same departments that I'd already spoken to, who then transferred me AGAIN to other departments).

When someone eventually told me that a re-scheduled appointment had never been organised at all, it left me feeling baffled and even more frustrated. How could they not have organised another appointment, even when the first person I talked to explicitly said that another appointment would be made? Everyone I spoke to was very unhelpful, and one of the staff eventually directed me to the secretary of the doctor who referred me. I've tried to ring them a few times since and its gone straight to voicemail.

I feel very cast aside by the hospital at the moment, as its been nearly three months since I was diagnosed, and still haven't had further tests. They've made no effort to contact me regarding anything. I even left a message on the secretary's voicemail and I still haven't had a phone call back.

I appreciate that the NHS is extremely busy, and they are put through a great deal. But surely this level of miscommunication is unacceptable? I have no idea what to do any more.

Anyone else had any similar experiences? Any advice?

31 Replies

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  • You contact PALS at the hospital concerned. You can also make an official complaint, if you put in writing it wil definitely be iinvestigated. Firstt though, contact PALS by phone and explain the problem. You can also go into the hospital and speak to PALS. Have you mentioned this to you GP?

  • What's PALs?

  • Patient Advisory Liason - there is usually an office in every major hospital.

  • Yes, happens to me regularly, make an appointment with your GP and ask for a copy of the letter the hospital should have sent to your GP when you were first diagnosed. Explain what happened and ask for an urgent referral. My GP was very angry on my behalf when I did this and I had the hospital on the phone the same afternoon, very apologetic - don't know what he said/did but it worked. Ensure you are registered to receive all correspondence between GP and hospital and keep a file - you then have written evidence - phone calls will nearly always be ignored - do wpeverything in writing,

    Inform yourself about AF - go to the AFA website and become your own best advocate, ask questions of your GP and consultant. Ask to be referred to an EP (Electrophysiologist) - there is a list of EPs on the AFA website.

    Don't panic as AF/AFl is not immediately life threatening and many of us live with AF and there are many of us who have been successfully treated and off all medications - the treatment you receive may very well depend upon how well informed you are so that you can ask questions and challenge doctors if you feel you are not receiving appropriate treatment.

    Interestingly, you get treated very differently if you adopt this approach.

    healthunlocked.com/api/redi...

    Good place to start is by watching this video by Prof Schilling - who is a leading expert in the UK.

    If you want to know anything post here - loads of supportive and knowledgeable people here, good luck.

    Best wishes CD

  • Excellent advice. We all deal with this on some level.

  • Thank you for the great advice. After ringing the secretary earlier on, it looks like my appointment for an echo-cardiogram is finally being re-scheduled. I will try and keep calm over the next few weeks, hopefully more information will become apparent soon!

  • Just as an addendum - Personally I would also always change any other appointment and prioritise making the hospital appointment, I do think you may be discriminated against if you try to change appointments and yes, hospitals are really that busy.

    I see a neurologist who tells me to come back in 6 months - Even though I take him with me to the administration office I still cannot get an appointment within 9 months. I changed my holiday dates and cancelled flights to make his appointments - or go privately when you will have absolutely no problems - cost of a private appointment with an EP is normally about £150-£300 - well worth the money. You can still be treated on the NHS but at least you will have had a consultation which can ease anxiety considerably.

    Anxiety is AF's travelling companion - adopt strategies to help you cope.

  • Frankly I doubt your suggestion that you have been shut out. Shit happens and in a busy hospital people do drop through the cracks. This has happened to me from time to time and on occasions I have had to resort to a stern letter to the department concerned, delivered by hand and for which a receipt was obtained. In every such case I was telephoned within a few hours and the mistakes rectified , on one occasion with an appointment the next working day.

    Whilst I agree that one should always make hospital appointments priority over any other business, hospitals do not "shut people out" as if they had been jilted. They do not have emotions, merely a creaking and overloaded administration system. People do not like to be held responsible so by taking the action above at least one person in the system has the incentive to get things put right.

  • I have dropped through the cracks more times than i care to mention. Potentially the most life threatening time was when i had a Mini stroke (T.I.A. ) and the receptionist failed to make me an appointment for a dopler scan to see if there were any more clots lurking waiting to cause a full blown stroke. As someone has said in another post, it is always an administration problem and once i have got through to doctors and nurses i have had fab treatment. The answer is that you have to take complete responsibility for your own health because no body cares about you as much as you do about yourself. I agree that sometimes it is the last thing you feel like because you just want someone else to take over when you are poorly and frightened but unfortunately it is the cold reality of the situation. Good luck.x

  • Very well said.

  • Ended up taking your advice and took the bull by the horns, as it were. Managed to get through to the secretary eventually and I should have another appointment within a few weeks, thankfully.

  • Well done. Im sure it is the only way to get things done. X

  • It's so true that you have to look after yourself, be involved and actually manage the situation. Unless of course you can't, and I feel very sorry for people who are unable to, and that could be anyone one day.

    I have fallen through many cracks, such as having been suspected of a heart attack, and being left alone in a waiting room waiting to be seen for 1.1/2 hours. They "forgot" me and I just sat there trying to stay calm and relaxed. All the time I could hear the girls chatting away at the desk. Maybe they were trying to finish me off by making me angry (which they didn't, I thought it was quite funny) :-) .

    Then minor cracks like having the appointment to review my monitor booked for the day before they fitted it :-) . Then, having had it fitted (for a week), being phoned after 1 day to ask why I hadn't returned it.

    And being booked in for an ablation at the massive, brand new, fantastic, and most impressive QE in Birmingham. Then waiting 7 hours because they hadn't got enough beds !!!

    Really want to emphasise how much anxiety and AF are bed-fellows. Main thing is to laugh about it all if you can, and as Bob said, it's not personal, although sometimes it feels like it :-) .

    In your position, if I understand the situation correctly, I'd ask my GP to be referred for a private appointment with an EP if you can afford it (£200-250?). That'll get the ball rolling nice and quick.

    Koll

  • I once had a doctor forget to order IV antibiotics after admitting me for emergency acute (nearly perforated) diverticulitis. Later in the day, when I asked the nurse why the bag they'd hooked me up to was only saline, she called the doc, and sure enough, he had just forgotten to order antibiotics before leaving. Yes, you have to be VERY alert!

  • I had a surgeon come to visit me the night before an op on my face. He showed me the XRay and went through what he was going to do.

    I looked at the XRay and sure enough, the metal peg in my front tooth was there, but it just seemed to be on the wrong side. But of course, I was looking at a mirror image, so naturally it was just confusing. But the more I looked, I still felt uneasy. Feeling like a complete idiot I said "Are you sure that's me?". Low and behold, it wasn't!!! It was another patient also with a peg, but in the other tooth. He was sooo embarrassed. Big mistake was he didn't ask my name when he came to check. Hope he would have done at the op though!!

  • Depending on facial surgery, you could have ended up looking like him!?

    (jk)

  • Good advice, thank you! I certainly agree, especially from my own experience, that anxiety is a precursor to cardiac events related to elevated BPM.

  • I fully understand that large ,busy hospitals- sometime, make errors in booking appointments- I completely accept this will always happen?

    My gripe is when they fail to communicate between clinics and different departments?

    Hospitals are required to set up Ambulatory Centres... that allow elderly patients home -then attend these centres -as a day patient?

    If all one's notes and details are passed on successfully, it probably works OK?

    I have yet to attend one of these centres ... where they know that:

    a) I am booked in to see them?

    b) They know why I am there?

    c) Have my notes or records?

    d) Can access my details on computer system?

    e) Offer triage - my urgency ?

    f) Have a list of contact numbers?

    Having left hospital early (to help stop bed blocking)...then ,when presenting to the Ambulatory Centre...they have three main questions?.........

    Who are you?

    What is wrong with you?

    What do you want?

    It may be a good experiment to try this approach? It is my experience ,that it fails miserably. The last thing one requires- when feeling very fragile and wanting follow up treatment... is wasting a whole day travelling, waiting...( paying car parking fees)- is to be informed you do not exist on the system?

    If the Ambulatory Consultants ,Doctors, Nurses and staff fail to rectify this comedy of errors... We the patients will probably continue to suffer this?

    It is bad practice that causes this -not errors?

  • My perception is that it is not the doctors or nurses or clinicians or even the administrators, most of the time, but very poor communication between all of them, operating with insufficient IT resources, a lack of basic computer skills to manage complex systems.

    - it says something when I could access my blood results through my GP surgery interface but my neurologist couldn't even log into the hospital system!

  • Hospital appointment letters often say that if you miss your appointment you will be referred back to your GP.

    This month my GP's surgery has a sign saying that 176 appointments were missed in December.

  • I think the IT knowledge of medical staff is appalling. The doctors and medical secretaries I know don't even know Windows properly, they can't even cut and paste. I still get letters to arrange appointments where everything else I do is organised through the net.

    This situation would be unacceptable in business, the company would simply go bust. Everyone I deal with (in business) has excellent IT skills.

  • As others have so rightly stated, we have to take responsibility for our self, by making sure all paperwork and case related notes are received, filed and produced when needed.

    I personally refuse to leave hospital, without my paperwork copies. I always ask the ambulance crew for copies of ECG strips.

    I believe I have three separate files on the go in hospital at this time?

    Not too good in an emergency?

    For all that, The NHS is fantastic!

  • This is a very familiar story........mostly due to admin. problems,shortage of staff,less than good training etc,etc. I have found going to the hospital if physically possibly helps heeps...that is to find the relevent 'offending' dept. and asking to see the secretary of the doc. concerned if you have a name or even the person in charge of reception.It works even better if you have to do it on behalf of elderly friends/relatives.

  • I think most hospitals don't allow rescheduling once the appointment is made. Indeed as they are usually booked up for 6 to 9 months if you can't make the appointment then you're at the back of the queue again.

    Your GP will need to restart the process.

  • Our hospital has an appointments dept and you can phone them direct and change your appointment.

  • I found PALS to be excellent. emailed to find out surgical waiting times 6 weeks after my out patient appt. They got back to me in 24 hours saying hernia repair would be in the New Year. I was very surprised to be offered Dec 14th. Two weeks after op I was phoned at 7.30pm one evening to be offered a date the following Saturday for surgery. On explaining I'd "been done" was told I was still on waiting list. It wasn't until later I wondered who had been crossed off instead of me!.

    It is certainly imperative to "fight one's corner" so to speak as no one is more concerned about my health than me.

  • Having received the first response to my complaint I can say that they're very bit as obtuse, evasive and dishonest as I'd been led to expect. Their excuse for denying that they had ever seen any evidence of AF was that the ECGs were filed in A&E, not cardiology. They've confirmed that they have the letter my GP sent, but haven't explained why they were previously denying they had it, or why they won't let me see it.

  • That is why hospitals that have been converted to fully electronic records are so much better!!!

  • The cardiologist showed me a blank computer screen as "proof" that I hadn't been to A&E, and even called a nurse in to witness it. What he knew but I didn't is that A&E use a completely separate computer system from cardiology.

  • Don't ever be ill on a bank holiday or a Sunday. I was admitted bank hol Monday morning in Aug 2014 with my first ever AF episode via A & E which had started the night before. I was put on a medical assessment ward & was left there until Tuesday afternoon until anyone from Cardiology knew I was there. Emergency echo had to be done as been AF for over 40 hours! Fortunately no clots so cardioversion (drug) took place. Needless to say I was frightened & angry, which doesn't help the condition.

    Hope your results come back ok. Best wishes

  • So familiar in my dealings with two hospitals for two different complaints. My own perception is that what goes wrong is usually the administration but when I called at the Consultants' secretaries' office in one "updated facilities", I was horrified by its appearance. There were three desks covered in paper work, bookshelves overflowing with files, notes pinned up on walls etc and in a space designed for one! One hospital is supposed to advise me every six months of a check up appointment but hasn't for the last three years. I always have to ring the Secretary who either makes the appointment for me or makes sure that admin. does it. This in modernised hospitals where the medical attention received has been excellent.

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