Last March I felt breathless with aching legs for about 4 weeks. Always been quite fit. Advised to go to hospital. Then referred for a scan in June. 2 days later I was asked to go for another scan. In the July I received a letter stating I had some coronary heart disease, the bottom of the letter mentioned a thymoma. Appt to see cardiologist was for September. Then received a letter stating it was a telephone appt. I complained in writing and was given a face to face appt. This was hijacked and the complaints manager was in attendance, really inappropriate behaviour in my book.
was told I would be referred to a surgeon about the thymoma and neurology to rule out Myacthenia Gravis.
December Neurology app was over the telephone, within5 mins I was told it wasn’t MG. January received a letter stating I was being referred back to cardiology. Cardiology then asked me which hospital I wanted to be referred to. Gave them my choice on Jan 8th. Given appt for26th March. Attended what I thought was a appt to deal with thymus. Was told I needed a bypass. Utterly shocked by this. Asked about thymus and was told it would be taken out when bypass was done. Next few weeks had lung function test, vein mapping, ultrasound, blood tests and angiogram that went horribly wrong and extremely painful for around 5 days.
8 weeks later I was called and told my lung function was quite good and I didn’t need a bypass or stents!
asked about the thymoma and was told I would now need to be referred to thoracics. Couldn’t believe it was all back to square one. Sent an email to the cardiologist stating I was very unhappy with the whole fiasco of 12 months after diagnosis I was only now being referred to thoracics. Received a contrite reply from the consultant.
can’t believe the attitude and archaic way in which this has been handled with very obvious delaying tactics, that or total incompetence.
Received a letter for another scan on 20th August. 2 weeks later I receive a telephone call from someone on the surgical team. Asked if I was expecting their call, I said I wasn’t and i had a scan 2 weeks prior but hadn’t received any outcome. I was told I would be called back that day.
I wasn’t and naturally became quite anxious. A day later I managed to get through to someone who explained the phone call had been about an appt to see a thoracic consultant. Why they didn’t make this clear at the onset is beyond me!
There is so little information out there about thymomas. In all my dealings so far since A&E in March last year(they were excellent) I feel I have been ignored and delayed. I had to complain and point out it had been 14 months since diagnosis and though the thymoma hadn’t been large it didn’t mean it wasn’t now or had spread.
I have a dry persistent cough which has got worse over the last 5 months’ I’ve started to tire more easily and seem to have lost some energy. I saw the cardiologist last September because I complained. The next person I saw face to face was the consultant on March 26th who said I needed a bypass, which I didn’t. My appointment with the thoracic consultant is September 20th
Thats 15 months and 2 face to face appointments since diagnosis from scans before I get to see someone about a condition that by all accounts is very rare.
Apart from the obvious worry I am totally disgusted and appalled with how the apparently “heroic NHS” has treated me. I feel that the wording “Incidental finding” regarding the thymoma has left me feeling that I am incidentally taking up valuable resources by questioning my lack of progress in dealing with my thymoma.
I have never put the NHS on the supposedly exhalted platform that society now seems to put it on, but I never expected such a lack of professionalism, joined up working or incompetence to be do rife.
Sorry it’s long winded, needed to get it off my chest. Would have gone to the Ombudsman- but they have a 3 month backlog and no longer seem interested in providing a service to the public anymore. Protect the NHS is now a national mantra, it needs protecting from itself and some radical reforms put in place
Hi Esteban and a very warm welcome to the online community
I'm not a member of this group but I noticed that no one had replied to you yet.
Reading through your post it does seem like you've been through an awful lot and I'm not sure if you're yet being treated. Having not been in your position with regard to care and treatment I don't think there's anything I can say but I hope having put all this down in writing has helped.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
That's great news that you're seeing the consultant tomorrow and I hope that appointment will start you on the way to treatment.
I don't know why they would be deliberately delaying your treatment. My experience was/is that as soon as they find something it's dealt with.
Do come back and let the group know how you got on and I'll be keeping my fingers crossed for you.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
