Travelled to London for care / Taking back control

[Quovadisuk]

At last, I travelled to London yesterday to Royal Brompton and Harfield for care that should have been in place several years ago by my local hospital trust ... and before you ask YES it was still under the NHS .

I have been suffering from heart trouble for some years and have had two stents in 2017 and another on Jan 2019 ... all these whilst on holiday and all in the same hospital and the same surgeon !!!

I have been in hopsital loads of times in this period in the UK even as an in patient and each time I had been told by my local hospital and cardio team that the tests were normal. My hospital file must be three inches thick ( I have seen it) Yet with all the history at their fingertips and previous stents they still say nothing is wrong ... The last escapade having a further stent in January having been rushed to hospital by ambulance for the second time in two years , made up my mind I needed to go elsewehere ....

I contacted my GP, on my return and had an immediate and urgent request to be seen by another cardioloigist at The Royal at my request , being the leading heart specialist in the UK and maybe even Europe. I even undertook research through their website to select a cardiologist I could get on and work with.

I spoke to the Royal, explaining my situation and am pleased to say I was able to receive an appointment within three weeks of the request made . In the interim my local hospital could only offer an appointment late April ??

The appointment was mid morning but arrived early just in case , within that time I hade an ECG a blood test and saw the cardiologist to discuss my situation and to take notes and to check my heart whilst there, and I was still able to leave before my appointment was actually due.

They have immediatley put together a comprehensive plan together for me with a wide variety of heart tests to be done including a stress test , scan and a more detailed heart scan through MRI imaging ......... and this will be scheduled within the next few weeks with a formal review in 12 weeks of the results.

To me whatever the results, this is the most positive outcome for my care I have experienced to date and all through me taking ownership of my own care and not taking NO for an answer.

If you feel that you arent getting the care in your area , PLEASE go and discuss this with your GP and request a CHANGE ...... if your GP is lethargic or not willing to listen then consider changing the GP. As harsh as this sounds, you cannot continue to listen to dinosaurs ANY MORE !!

You DONT have to take SECOND BEST . This may be your only opportunity to take control of you LIFE. Be POSITIVE, take CONTROL OF YOUR CARE .

All the very best to everyone !!

[Ianc2]

Please let us all now how you get on. I would be particularly interested if they can give you any information about why your arteries clogged up in the first place?

[Torvi]

Hello Quovadisuk

So pleased for you that you are on the right track.

I have never seen a Cardiologist on the NHS, for three years I have seen the same Cardiologist privately , last week I had the results of a ten day monitor, thousands of ectopic beats and four short runs of AF, he seemed happy enough with the results, changed my bets blocker and he doesn’t want to see me for a year unless things change .

I am tempted to go to the Brompton for a second opinion, I will wait and see how you get on and check out the Drs there . All the best to you,

Torvi

[Quovadisuk]

Thank you to all who have replied to date . I will for sure keep you updated as to my progress and experiences ... I am hoping that I will pass all the tests they deem are neccessary to ascertain the severity (if any) of my condition to date. I just feel a little more secure that an independent team are now clearing the decks and starting afresh to see what the problem(s) have been the cause of the last two year incidents for the requirement of surgery and three stents, and to offer better clarity as to where I am now and where I should be going from here .

When I first started on my travels of bad health going back to 2010ish , It was found my bad cholestrol levels were 10.8 , very high blood pressure, and of course overweight (18 stone) and stress. At this point , matters were not good .

Today, I am 15 stone , my cholestrol levels are 1.8 , but still suffer with the stress side so this requires further work.

I think the the last two years surgery has been neccessary as the damage may have been with me for some years, so despite the improvements to date, it has still caught up with me .... My saving grace is that had I not done something towards reducing the risk then I dont think I would be here today .

Anyway this is only my view, lets see what the experts say and I will keep you posted

Regards to all

[Torvi]

Good luck Quovadisuk.

[Dockdog]

Dear Quovadisuk,

I am so pleased for you to have taken this initiative! A very similar experience for me of "tick box" mentality from a variety of specialists in my NHS Hospital Trust - Over several years of hunting for Red October ( my name for the condition that hid from them all) I went to see a physician at Benenden who thoroughly checked me over and carried out scans and ECG and then introduced me to a colleague who he had discussed my case with. This gentleman had been trained at the Royal Brompton and after repeating the scans again diagnosed me with constrictive pericarditis. Benenden paid for a special MRI scan and a consult at the Royal Brompton which confirmed the diagnosis. From then on and through the NHS the head of cardiology at my local hospital transferred me to the Brompton saying the treatment was beyond their capability, that was honest!

I immediately felt confident with the Professor of Cardiology who examined me and the decision was made to give me a pericardiectomy. In due course last Spring I had the op and spent nearly 5 weeks on the cardiac ward being treated so incredibly well. All the staff at the Brompton are so well motivated and supportive, it is a breath of spring to be treated there and like you I even had the choice of the surgeon!

You have done absolutely the right thing in this and I can assure you of the best of treatment and care. Good luck and success!

Kind regards.