How do I ask for a repeat test I feel... - British Heart Fou...

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How do I ask for a repeat test I feel is needed but cardiologist doesn't?

Helly75 profile image

I was told on 2nd admission I'd be having a repeat echocardiogram, that never happened. Due to worsening symptoms since april I'm worried about heart function, it wasn't suggested at my last appointment either . I feel like an absolute pest at this point so I'm kind of afraid to ask the cardiologist or even speak to my GP ,any suggestions??

37 Replies

I would suggest being a pest and asking for what was suggested in April.

Last year I was in dire straits heart-health wise and I asked for an echo, to be told there was a waiting list of one and a half thousand people in front of me due to Covid.

I paid for a private echo and the results were so shocking that it was immediately taken up by a senior cardiologist and suddenly I was given an NHS echo.

Helly75 profile image
Helly75 in reply to TRST

I'm sure that was so scary for you, i do feel like an absolute nuisance now & considering just paying for it to avoid being put off again. Seems my new normal is thinking I'm getting better & feeling more positive & spirits have been lifted to taking a turn for the worse,I cant win

Hello :-)

I think like this that it is my body and if I am not happy then I will be a pest

I also think keep things simple and just ask you have every right to do so

We sometimes know our bodies better than anyone else and so therefore if we are not happy we speak out and let them know

I hope you just simply ask them , don't care what they think and get that peace of mind that I sense you so need :-) x

Helly75 profile image
Helly75 in reply to BeKind28

Thank you ,I'm dreading doing it but I will do my own head in if I dont 😬

BeKind28 profile image
BeKind28 in reply to Helly75

I know I am the same Take a few deep breaths though and just go for it , it will make you feel anxious but hopefully better afterwards :-)

Let us know how you get on :-) x

Helly75 profile image
Helly75 in reply to BeKind28

It will probably take me a week to get the courage 😂 but if I do I will let you know x

BeKind28 profile image
BeKind28 in reply to Helly75

Just go for it what have you to lose , the longer you put it of the fear will just feel worse and there is nothing to fear as they say than fear itself :-)You can do this :-) x

Helly75 profile image
Helly75 in reply to BeKind28

I will send the email asap ,I'm sure he will say no but I have to just do it x

BeKind28 profile image
BeKind28 in reply to Helly75

Put in your email that this is very important to you and if he is going to refuse could he email you a full explanation as to why as you are finding it very hard to understand You could even say if he is going to refuse would it be possible for a second opinion

And yes do it now send it and wait

I suffer really bad with anxiety yet when I feel something needs doing or I want an explanation etc even though it makes me anxious I think no I am going to let them know why should I not I am within my rights and I do sometimes I think I upset a few but I get my answers :-) x

Hi helly well if they suggested it last time you were in hospital then I would perhaps try and get through to the ward you were on or if you have a secretary’s number to speak to and explain you haven’t heard anything about your appointment failing that get in touch with GP they should have received a letter by now and with a bit of luck they may expedite it good luck hope you feel better soon xx

Helly75 profile image
Helly75 in reply to Retirement65

I will try when I pluck up the courage ,I'm raging at myself for not being more insistent at the time 😡

I know exactly where you are coming from Helly75!I am sorry to say that I am not at all impressed with the services being handed out by the NHS these days!!

I have been admitted by ambulance to A&E on 4 different occasions because my heart and lungs have been playing up and on each and every occasion I was told by junior doctors that I would be kept in for further tests and then after 12, 13, 15 & 17 hours lying on one of those damnable A&E trolley/beds that I was going to be discharged without any further attention being received or offered!

Over the 4 years since my episode started and most especially since my last (and worst) admission, I have now become and ever more insistent thorn in the side of my local surgery and have now got to know several of the consultant secretarial jewels of ladies at the hospital who are now bating on my crease and I am finally on the receiving end of decent tests and treatment, but my God, it has taken some doing!!

Helly75 profile image
Helly75 in reply to Buzzy-Beans

I'm sorry you've had to go through all that , I was with the cardiologist a couple of weeks ago & got very upset so it just went out of my head,they go off tests that were done a while ago instead of repeating like they were supposed to

Sorry to hear that you are having to go through this. What I have learnt is that with the NHS you have to be on your own case. I do hope that you find the courage to ask for the repeat echocardiogram. Keep thinking of the motto.... "if you don't ask, you don't get".

Kind regards,

Gerald

Helly75 profile image
Helly75 in reply to GWP1952

Thanks Gerald, I will see how I feel this week & if I get the courage 😂

I didn’t know whether to post this as it may come across as a bit of a rant, and I guess in a way it is. However the main purpose of it is not to slag the NHS off, but to get the message across that sometimes you just have to be very, very persistent to get NHS staff to take you seriously. As a commenter mentioned recently the NHS are used to dealing with seriously ill or injured people and the harsh truth is that they are just not very good at dealing with people who have kept themselves fit and healthy or present an image of a fit and healthy individual.If I cast my mind back to over forty years ago on separate occasions I damaged fingers playing sport. My local A & E said they were dislocated and just taped the finger to the adjoining finger. No x-ray, I was simply sent home being told they would heal over time. It turned out both fingers were broken, and I now have permanently disfigured fingers, one on each hand. Luckily I have movement in both of the fingers.

Fast forward to about 18 years ago. I was in the Lake District on an adventure trip with a group children when I saw a heavy old fashioned wet hawser rope about to fall from a tree onto a young child’s head. I put my hand out to stop the rope hitting the child on the head. The result a snapped bicep. I attended A & E and was told there was nothing they could do about it.

Fast forward another two years and I was cycling home when I was wiped out by a car turning right in front of me (the car drivers fault). This car then pushed me into another car. Result knocked unconscious. Luckily an ambulance crew were passing by so I got prompt treatment. Immobilised, blue light run to hospital while they checked my back out and x-rayed my lower spine. Visibly I looked fine, just a deep gash above my eye where my glasses had shattered and cuts and bruises.

I seemed to recover well from the accident, however I was left with severe pain and swelling in both wrists and a pain in my right hip. These pains and symptoms were dismissed by my own GP and medical staff when I re-attended my local A & E. About 4 or 5 weeks later I hear a loud snap in my left wrist as I was putting my then young son to bed. Back to A & E. The result a snapped tendon in my left wrist. It turns out the wrist has been broken but not picked up and the broken parts of bone has been gently severing the tendon.

A few months later I was still in great pain from my hip. After persevering I was sent for an MRI scan of the hip. When the consultant showed me the results I was made to feel like an absolute time waster. He simply said there was signs of wear and tear on my hip due to my active lifestyle.

I think it was about two years after the accident I had to see a specialist as part of the insurance claim process. He was extremely thorough noting my various injuries etc. Imagine my surprise when he asked me what had happened with my snapped bicep and snapped tendon on the wrist. I explained to him how I had been examined and then just sent home after being told there was nothing that could be done. He then informed me that both the tendon and the bicep could have been repaired. How did he know this? He was a surgeon who actually carried out this type of operation! Similarly he was sceptical that my hip hadn’t been damaged to some degree.

Fast forward another couple of years, full right hip replacement thanks to the injury from the bike accident not being picked up.

Now to the nub of this lengthy diatribe. Out of the blue in early 2019 I found out I had been born with a bicuspid valve. As a result I had aortic stenosis and an aneurysm on the aortic root. At that time I was still fit and healthy. However I experienced a severe decline in my health and fitness in a very short time. I went from regular cycling and hillwalking and exercising at the gym to within 6 months to not being able to tie my shoes without getting out of breath.

My local GP surgery were very good and organised an echo which showed my aortic root to be swollen but less than the recommended size for surgery. I instinctively knew that something was seriously wrong. I attended A & E but was told I was fine. In the end I resorted to paying privately for a cardiologist. Even this chap told me I was fine and ‘just needed regular monitoring’. Initially for a very short space of time I was reassured, but then again I just knew things were not right. I sought out the private cardiologist again and in the end spent over £2,000 trying to get to the bottom of things. Twice I had to attend A & E as I was terrified something was about to go wrong. On the second visit they examined me and sent me away, telling me to come back the next day for a CT scan. (I hadn’t got as far as a CT scan with my private consultation ). The next day I re-attend with my wife. Not a gripe, just an observation but I was put at the end of a sizeable queue of people who in truth all looked in a far worse condition than me. I am told to go away and get some lunch and return for the afternoon session. Eventually about 4pm that afternoon I get my CT scan. Immediately after the scan I am told not to move and placed in a wheelchair. The end result I am kept in hospital for the next two weeks until I had an AVR and aortic root graft. While waiting for a bed on the ward, the consultant who I had seen privately actually sought me out and apologised for his incorrect diagnosis. If my wife hadn’t been with me to witness this I don’t think anyone would have believed me.

Apologies for prattling on but I am just trying to get a message across. This is not a dig at the NHS who often do a very trying job under difficult circumstances. It’s just that I have found that if you present a picture of a healthy individual you often need to be very, very persistent to get something done.

Do not ever feel like a pest. Look at it this way, you have spent all your life paying to fund the NHS. Be persistent, and do not give up. Best wishes and good luck.

Helly75 profile image
Helly75 in reply to Mikedabike

That's a lot to go through & I'm glad you eventually got help, sometimes it really depends who you get ,I'm very aware if I had of got a different cardiologist there was no chance of any follow up. It should never depend on who you get . Unfortunately for me I'd been told lots of different things by lots of different drs leading to 3 years of sheer terror & constant fear & the not knowing is the worst part. Now I do know what's happening it's been a relief but it's always short lived as diagnosis doesnt mean cure & nor has it changed anything for me ,but I'm still here ,useless but still here 🤗

Hiya me again I used to be just like you 😃 but my husband got something like covid19 in 2015He was admitted to hospital just like Boris b😃and sat there fir 12 days

I had to chase everyone for help chest X-rays everything that they where going to do but they never got round to it until I confronted

Anyway day 12 we where on the cardiac ward and my consultant cardiologist was the clinical director

And I went and found him and I asked him what was going on

He came to see my husband and went to check that everything had been done that should have been done

Within 30 minutes of him doing this they came and said my husband needed another CT SCAN. He had one done day one and they could see abnormalities on his lungs

When they did the second one they found his lungs where totally destroyed

They then contacted icu and my husband spent 14 weeks on life support 6 asleep when he woke they put a DNR on him I questioned that and they went through his notes and found out he was on morphine and that’s why he would not breathe so they changed that

he had 5 lots of blood to get oxygen into his body as the machine was on 100/% but it wasn’t enough

He had kidney dialysis and a cardiac arrest but they got him back

But there was so many times I had to ask fir so much

But he was entitled to it it’s called care

You are entitled to care to

I had a meeting with the clinical director of the icu who asked me to do two talks on his behalf about the care we had had so I did

He then offered to go through my husband case and explain what happened

He told me there and then he was only alive because of me

I explained I only asked my questions on each occasion because I wanted to do the best I could for Phil and he said if I had not asked my questions they would not have done their job as well ad they did

My husband was in hospital for 7 months a the doctors there said if they where sick they wanted me in their side but I have been married 47 years on the 28th September my husband is my life

As you know we had a baby die and I also had to sort out my care

But the doctors understand

Just write you’re email explaining how you have been waiting to have your echo and you feel like you have been let down having to chase it up and how important it is for you to understand your illness so that you can help yourself and take control of your illness and not let it rule you

And cause you all this worry

You are entitled to care

Like I say I have learned the hard way I hate asking anything from anyone or being a nuisance but your health is important

And your heart is your engine in your car

And you can have a second opinion my husband asked for one and we ended up at the royal Brompton

Best hospital ever

Take care and try not to worry 👍🏻😘

So sorry to hear what you and your husband have experienced to say it’s been tough for you both is an understatement I can only hope things have got better for you and life gets easier take care both of you just wanted to let you know I was thinking about you 🙂x

Thank you so much my husband is much better we had oxygen all round the house and he was in a wheelchair for 18 months as he lost his muscles and has lots of muscle ache as part of his now condition He is not as he was but he is here and we are very grateful they told me every day fir 7 months he would die

He was on PALATIVE care for 2 years but with this covid19 he had no immune system so we have to keep him safe thank you for thinking of us 😘

Helly75 profile image
Helly75 in reply to Enonykasper

Thank you xx I will try this week if I can face it 😬

Hi I understand what you are sayingI also feel a pain ringing GP or to chase annual cardiology appointment but one thing I have learnt is the more you press the more likely you are to be seen and heard

Definitely contact them 😃

Helly75 profile image
Helly75 in reply to AH31

That's the problem I've been a massive thorn in the side for 3 years fighting for answers, I've got nothing left in the tank x

Don't be coy about giving them a nudge if need be. My own GP told me a few years ago not to sit and wait for appointments /tests if I had been told I needed them. I very often rang to remind them I was still waiting, and on occasion went into the clinic and spoke to the secretary responsible for making the appointments. Strangely, they very often found me a cancellation the week after. I know it feels like your being a pain, but sometimes you do have to shout to be heard.

Helly75 profile image
Helly75 in reply to kelebek09

The cardiologist actually gave me his email so I can contact directly, I'd just been hoping not to have to use it 🙄

Milkfairy profile image
MilkfairyHeart Star in reply to Helly75

I agree with HappyJo, send your Cardiologist an email.They might actually appreciate the reminder, they may have forgotten....they are human😊

Enonykasper profile image
Enonykasper in reply to Helly75

Do you know doctors get fraustrated as to how patient get treated and messed about Seem to me like you’re cardiologist thinks you have been through enough and would love to help you cause he probably can

Look on the bright side he would not have given you his email if he did not think he could help if you need it try him 👍🏻😘

Helly75 profile image
Helly75 in reply to Enonykasper

I think at this stage hes ready to move country & assume a new identity to get away from me 😂, I will still find him x

Enonykasper profile image
Enonykasper in reply to Helly75

Go for it you may be surprised how he may be able to help I have been surprised a few times and I’m having the same trouble at costas at the moment they never have any bread for toast when I go in I laughed at the manager the other day I said I bet you used to like me and he said he thinks I’m great

But I’m always polite but he needs to order another loaf of bread if he’s sold out

He’s losing profit

🤣🤣🤣👍🏻🤣

kelebek09 profile image
kelebek09 in reply to Helly75

Please use it. They have so many patients, sometimes people get overlooked, or messages aren't passed on, so a reminder that you're still waiting can get the ball rolling again. My consultant's request for a Holter monitor got lost in the system when I was first having investigations. I went in to the clinic to check what was happening, and they couldn't find the referral. I rang the secretary and she sent another one, and asked for confirmation they received it. I waited 4 weeks, then went back in. They said it would be another 7 weeks as they were short of monitors. I explained I'd already been waiting 10 weeks, and was getting quite anxious. She asked if I could come in at short notice and I said I could. I got a phone call 3 days later to go and and have it fitted that morning. I've had to give them a nudge a few times now, but if you're polite, and explain that the delay is causing you anxiety, usually they are very helpful and can at least tell you how long you can expect to wait. Better than just sitting worrying.

Helly75 profile image
Helly75 in reply to kelebek09

I was told id been referred early 2019 for 72 holter monitor & still waiting, rapid access clinic said they had referred me feb 2020 ,still not had it ,rang 6 times said I'd get a call back which never happened, not surprisingly I dont trust them

kelebek09 profile image
kelebek09 in reply to Helly75

Wow, I'd have been jumping up and down in the clinic by now! I know our own area, West Midlands, is very short of monitors, but I haven't heard of anyone waiting that long. The second time I had one, I'd been taken into A&E by ambulance after my heart rate when off the scale at home. They kept me in overnight on a hospital monitor then told me they were keeping me on it for a few days then arranging for me to have a Holter at home. I refused to stay in hospital because my son was going into hospital for another operation the next day following a serious accident, and I was more worried about him than myself. I wanted to discharge myself, and a nurse rang my consultant, who came to see me and tried to calm me down. He said he would find me a monitor and get me home as I was getting very stressed, which wasn't helping me. Within an hour I was down in the clinic having a monitor fitted. Two more trips to A&E, and I had an ICD implanted, as a precaution. Since then I've seen another cardio/electrophysiologist who has gone into what is wrong with me and told me what options are available in great detail. He is also trying to make sure that my immediate family are genetically tested as there's a probability that my condition is hereditary. Hearing about the long delays others have had waiting for tests or treatment, or just an appointment, I think I've been lucky.

Helly75 profile image
Helly75 in reply to kelebek09

That's such a lot to go through 😞 and I'm glad you got what you needed quickly enough, I just gave up after a while & again dont have any courage to chase clinics at the minute

You really have to be proactive and demand what you are entitled to. When my dad took ill the consultant told me he was having a stent fitted into his ureter because of poor kidney function. I asked for an explanation; was the blockage inside or outside the ureter and did it have anything to do with the bladder cancer he'd had for 10 years? At that point he consultant literally shot out of the room. He hadn't even read my dad's notes. If I hadn't asked and demanded dad be changed to another consultant he would never have been treated for his prostate cancer. Last year I had a scan for possible bowel cancer which came back normal. Last week my GP found a lump on my bowel and did a referral. I quickly got a letter with an appointment for December- a telephone consultation only. The GP had asked for an immediate sigmoidoscopy. ( Am I supposed to lubricate the phone and try to do one myself?). End result I phoned the GP who immediately emailed them for a FAST response. Result a CT scan next week but still haven't heard about the siggy. Persist; pester, make a nuisance of yourself until they do it. Say you understand they have a backlog of patients but the lack of treatment/test is affecting your mental health and you have as much right to the test you need as anyone else.

Helly75 profile image
Helly75 in reply to Qualipop

I am the same I get letters all the time asking if I still need an appointment as if the reason you've been referred has just went away ,so annoying! I was told I'd have an echocardiogram and it didn't happen, was never mentioned at my appointment either & I was that upset it fell out of my head,more annoyed at myself to be honest

Like others have said you have to ask for what you need and don't be afraid to challenge a Consultant albeit in a calm factual manner.

I think what we get afraid of is having neurotic or anxiety put in our notes just because we ask questions and then they'll dismiss them in that basis.

Helly75 profile image
Helly75 in reply to Dino40

That's what I'm worried about although the word they use with me is distressed, is it any wonder & I've still not sent the email 😬

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