I had a huge heart attack on 8th Jan which I am led to believe was a lot related to work stress
I went in to Derby hospital as i work in Derbyshire and had stent fitted straight away , 6 days later i was sent home and told they would be in touch
Then nothing , nothing
I spoke to my doctor after several calls not getting through and he suggested I transfer my case to Gloucester Hospital as my home is near there ( long story)
After a couple of months i got a telephone appointment with them and was asked to go in for an ECG and said they wanted to review my huge list of medication
I went in for this and heard nothing then got a letter asking me to go back for Ecocardigraph which is more detailed than ECG went for this and lady who did it said my heart was working at 30 and not at 50 as it should , whatever that means
Went for this and nothing came back
Couple of months later got a copy of letter sent to my Doctor , not to me , no explanation , no calls and it said they are thinking I should have a diffibulator fitted in my chest , nothing telling me why
Tried to call Consultant and Doctor but no calls back or anything
Then i got a letter confirming a telephone appointment with the consultant from Derby who was supposed to have been notified i had been referred to Gloucester, but surprise surprise he had heard nothing , he then told me that i should not need Diffibulator as it should improve with time
He said he would write to Gloucester to confirm his thoughts
Then nothing again.
Out of the blue i had a call one Wednesday pm from a guy who said he was an Cardio Implant Technician and he had a cancelled appointment on the Friday could i come in and have this implant fitted Obviously I was not only shocked but also terrified not knowing what to do or if i really needed to and why.
I said no because i had no explanation, he was also leaving Gloucester that week and going to Birmingham
Now i still have no feedback from Doctors of consultant
Then out of the blue i had letter from Birmingham to confirm telephone appointment with the Technician guy for an appointment he was now a cardiac consultant
The two days later i get a call from a nurse for a pre op for this procedure that I don’t really know about and have no explanation off
This is all now a bit crazy I don’t know how bad or good I am , have no idea if i really need this thing don’t know anything about my condition and am scared to bits
Obviously i have now to wait for this appointment with this guy in Birmingham and try and get some answers
In the meantime i just wondered if anyone else had been through this sort of mess and if anyone has any experiences of this diffibulator fitting or workings
Maybe someone can help to put my mind at rest
Hope to get some comments
Pete Sanderson ( ps i am 66 years old , so not young but not done yet i hope.)
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I can't comment on your medical conditions. However my suggestion is to make an appointment to sit down with your GP and discuss your situation (and not by way of a telephone appointment, this is serious stuff), since he/she will have access to your medical records and will be able to offer a professional opinion and advise you on the best way forward, given you seem to be dealing with several parts of the NHS, That is what GPs are there for as primary care providers. Get him/her on your side, and take some of the strain off your shoulders.
thanks for that , i tried called 3 times and waited an hour each time then last time i got through and was told doctor could not see me but could have a phone appointment but it was earliest second week in December , she then said i was probably wasting my time as doctor had only had one letter from consultant so she said my best bet was to call consultant and try and get appointment
I think my only choice is to wait till 5th Dec to talk to implant technician or consultant as he now is and see what he says I am going to get my wife to sit in on it as well
It’s not easy and not straight forward and certainly worrying
You have received a very disappointing response from your GP practice but I am afraid to say not unexpected. Under the circumstances I still believe you need the GPs input, so I suggest you write a briefing note to your GP about your dilemma, you have the basis for it in your original post, and go ahead and make the appointment. But still go ahead as an interim with the implant technician. I hope you eventually get sorted.
Hello
Well I had to read that twice and wondered how many more places are they going to send the poor man I would be climbing the walls with all that confliction you certainly have been made to feel confused it would make anyone feel the same !
Derbyshire is somewhere I am familiar with it is a shame they did not send you to Sheffield Hospital I had my op there and compared to my Hospital they knew what they were doing
You need answers of course and you need a face to face with your Doctor and ask them to get to the bottom of all this and who is right and who is wrong with what they say you do or don't need
And no at 66 you are not done yet but be assertive and get the answers you need
I tried to call doctor and insist on appointment but told there was none for a long time , it would only be a telephone appointment and the receptionist told me i would be wasting my time as he would no know anything because they had only received one communication from the consultants so would not know anything so she said phone consultant
As i said above I think only thing I can do it wait for 5th Dec call with Technician or Consultant what ever he is and grill him fir answers
I am sorry this has happened and I can understand how it would make you worry but it will not be long till the 5th Dec even though while we are waiting it can feel a long time
The only other thing I can think of is do you have a Consultants letter that you are under now as you could try phoning their Secretary and explaining all this mess basically and that you would like to have a call sooner if possible
Anything is worth a go but if not good Luck on the 5th and I hope you will update us x
what a stressful time and utter nightmare for you.
I would get onto the GP surgery full patient access or request copies of all your letters, from the initial admission to now together.
Given you are having no luck with actually speaking with anyone I woukd attend the pre op. You don’t have to go through with anything or sign consent but it would enable you to meet up with a health care professional to perhaps get some answers and clarity.
If you have all the letters with you and read them yourself that would be useful to get a timeline of key points ready for the appointment.
If they are going down the route of needing a device implant they obviously have good reason for pursuing this , it’s just awful that no one has as yet explained any of this to you.
I'm sorry you're going through all this. Its just not good enough. I only went through half of what you're going through before my bypass surgery and that was bad enough. I found there is little consideration for patients mental wellness. Copies of letters to GPs without explanation is uncaring and quite frankly abhorrent. I went through the same thing. When you see the words severe and urgent in technical letters it turns your world upside down but there's bo support to follow it up.
It sounds like you're consistently hitting a brick wall. I know it sounds wrong on so many levels but I would make an appointment this week with a cardiologist privately at Gloucester hospital and explain you expect him to have all your NHS records available. It would be around £200 but I think your health and wellbeing are worth it if you can afford it.
Secondly I would contact PALs at the hospital. (This is what it is called in Derby, I assume every NHS hospital has one?) to complain about the treatment you've received.
The NHS is really in such a mess. It's such a shame. The skills are there and I have complete faith in the surgeons, doctors etc but one hand doesn't know what the other is doing.
I really feel for you. I agree with Susie. I felt guilty paying but my GP actually encouraged me. If you can get a private consultation you get to sit down with someone face to face. Do you have a name of the cardiologist heading the team at Gloucester? There will be cardiologists there that also do private work and hopefully has access to records.
They may want letter/email from your GP. Any dr at your surgery can do that. I don’t think they can refuse. If you can’t get through/ support you may find consultant will see you anyway.
Your GP does not sound at all helpful. Whilst getting private consultant you may also wish to write to your GP and/ or manager of the surgery to put in writing what has happened. There at least woukd be something in your records and it may spur them into action.
If the hospital has a Patient Liaison Service it may help. I used it for a friend who had sudden sight loss and was not getting treatment in hospital due to them failing to do proper tests and then’falling through the cracks’ between clinics, plus wrong letters and appointments. She got sorted but I also went through formal complaint system - but that takes weeks and really just forces an apology and promise to do better.
Do take someone to appointments. My friend said it was invaluable having support and someone to hear what is said - even take notes. I asked questions for her too. I wish I could have taken someone on some of my 20 trips to eye hospital this year. It Is easier to advocate for others than it is for yourself!
Keep up your pressure on them and your determination.
Do report back. There are so many folk on this forum who have excellent observations and suggestions following their own experiences.
Sorry to hear about your experience. My personal experience has led me to avoid direct interaction with NHS process at all costs, especially my GP.
The best decision I made was to see a cardiologist privately at the Royal Brompton. I can speak with him at any time, he follows my case through different consultants and surgeons and the cost is minimal as most procedures can still be billed back to the NHS.
As I said, that’s just my opinion, but it works great for me.
Your best bet is to contact PALS to try to get information and also to look at making a complaint. Obtain copies of all paperwork for your own records. From my experience Gloucester is a mess, and that is becoming all too apparent from the latest reports.
I would call the pre-op people who recently contacted you. Ask who the referring clinician is (they would have the referral letter from Cardiologist), ask for their secretary’s contact details. When you contact them, explain you’ve been invited for a procedure but have no idea whether it’s definitely clinically indicated, what other options might be available to you etc. Explain the lack of communication and your subsequent confusion.
It is only the Cardiologist (or a member of their medical team) who can go through all of this with you. The GP can only listen to your concerns and write to Cardiologist on your behalf. I’d cut out the middle person and contact Cardiologist directly.
This won't help you with past letters but I always tell who ever I see/talk to that I want copies of my medical letters to my GP. I can also see all my letters sent to my GP on line via Patient Access - ask at your surgery for access. You could also try emailing the PAL's department at the hospital ask explaining the problem. I find them very good at solving things. gloshospitals.nhs.uk/contac...
Only response I had from my GP was when she told me over the phone that my chest pains were nothing to worry about a month before I had my HA.
Anything below 50 counts as Heart Failure and I was contacted by the Heart Failure Clinic within a month of my diagnosis and have had appointments face to face with them every 2 - 3 months for the past year at the local Community Hospital.
Someone from Cardiac Rehab came to my hospital bed straight after my first stent was fitted and phoned me every week (This was during the restrictions). After a few appointments at their gym, I was discharged into the care of a regular rehab session at my local gym, which I attend twice a week. We have to pay to cover the rent of the studio, but it's probably cheaper than hospital parking charges.
Comments here show me we are lucky to have a dedicated Cardiology centre at Basildon Hospital and a Community Heart Failure service run by another NHS Trust. Must be very scary in areas that don't have this sort of service.
I have a ICD. It has never given me any problems however it want put in until they had discussed it fully with me and I was able to make a informed decision.
The procedure is straight forward - I have had worse trips to the dentist. They create a small pouch in your shoulder for the ICD and feed the lead through a vein to the heart. All painless and it takes 30 mins.
It take about 2 weeks for the wound to fully heal and you must keep it clean. After that you can just get on with your life.
You can feel it if you go looking for it. I', always aware that I have to be careful not to accidentally poke it in case I damage it but my Cardiologist just laughs, they are pretty tough bits of kit.
Mine has never gone off. It just sits there and reports the health of my heart so it acts as a monitoring system as well as a protection system. I'm assured that if it was activated I would be unconscious.
Once, in the early days, a stupid Doctor used it to cardiovert me whilst I was still conscious (no anesthetic) . It wasn't pleasant. I raised a complaint and got an apology but this was just the action of a stupid Doctor. I have never heard of this happening to anyone else.
Thanks for the info it is much appreciated and is also reassuring Was there things you had to do or not do during recovery or can you just get straight on with everything when you go home
Pretty much just get on with your life. Keep the wound clean, rest fort a couple of days, inform DVLC. Keep it away from large engines, magnets and mobile phones (12 inches away). I still use my chainsaw, sit in lawn mower etc.
It sounds like they are plugging these things into people all the time nowadays as a precaution.
Thank you for your help and advice it has been really helpful
I will make sure I question everything as soon as i can but however clever he is he wont have the experience of it that you have had an that is a massive help
Thanks for you help but just so you can see what a mess this is , I got a phone call this morning to say my procedure has been booked for 7th Dec when my appointment to discuss this was 5th Dec
All very strange so i have put that off till I speak to this guy on 5th
my initial ICD insertion was alright as done under appropriate sedation. I cannot say the same when the battery needed replacing. It was done under a local, it was really painful and even the surgeon admitted that next time I should have an anaesthetic. I am petite and this may be a factor according to research done in U.S.A.
Hallo Pete, Frank here. Communications mess, I`d say. The defibrillator is usually for those of us with irregular heartbeats (Ischaemic). Mine is normally 35 bpm (yea, I know) but I have an extra electric pathway in my heart...which led to my cardiac arrest. I`d had six heart attacks since I was 35, so pretty used to it all.
If ( like me) you keep your correspondence call Gloucester and ask for the Consultant, or leave a message. Go Direct, `cos the referral`s been made. Be persistent.
I`m very fortunate in Newcastle, but one of my daughter`s a GP in Manchester and she HATES it; "it takes AGES for people to get back to me" she moans.....and she trained with half of them!
If you`ve got the letter, punch the digits and get talking.
NB. Some hospitals have `Defibrillator Support Groups`. Find one local to you and pop along.
Sometimes getting in touch with the consultants secretary is the key to finding out what’s going on. They are usually the ones that actually know. Maybe try that approach. 🙏
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My first cardiac rehab session
Start cardiac rehab next week
Last cardiac rehab next week 
cardiac related mental distress
