Thought the Royal Brompton was a Brilliant Hospital but Now Badly Let Down!

Having been mismanaged for years by my local hospital in Kent which results in undiagnosed severe heart failure and severe cardiomyopathy I was sent to the Royal Brompton Hospital in London last year. In patient treatment good but the last year as an outpatient, hell on earth! I have not had one follow up appointment with the cardiology team and no echo. I have been forced to really be aggressive and now the hospital is trying to throw appointments at me. I am absolutely annoyed that I have driven my care and not them. They have no priority to CSS patients with heart complications. I have asked them all to investigate why my treatment is non-existent, why they consider severe heart disease requires no care plan and why as a dumb patient, I am driving my treatment and care and I want an apology. I will wait until hell freezes over with the NHS response. I had an ablation consultation in July and should have had a 24 heart monitor. I chased and chased but was told they were all unavailable and with patients. To date, still no test. So avoid the Royal Brompton as the specialist national heart and lung hospital. The state of the buildings split on many sites should ring alarm bells at the substandard quality of healthcare you will all received. Disappointed but at worse, I have no support.

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  • I have been cared for at Addenbrookes for five years. The Vasculitis clinic is so good and all the medical staff, also I too am with cardiology, equally good. I think the problem is with administration.

    A brain scan was requested for me at the beginning of July last year. I had the scan in September and the neuro appointment in mid January. My sister had a private scan on her brain a week after her request and saw the consultant the same day for her report. Both my sister's appointments were scheduled for the same day and her scan transferred to the consultant's computer in real time ready for her appointment an hour later.

    We both had anomalies on our scans.

    If it is possible to clear a case in 7 days, why should the NHS take 7 months which could be terminal?

    By the way, because of the delays in cardiology my consultant suggested that I buy a gizmo for my mobile called AliveCor. It cost about £50 and takes instant ECGs. I printed the reports for my cardiologist who was very pleased and changed my medication immediately to great effect. You can also email the results directly to your consultant. Worth looking on the internet.

  • If you call the VUK helpline they can help with advice and support. This is the link vasculitis.org.uk/helpline

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