"Treatment and care following Pulmonary Embolism"

About: Lincoln County Hospital / Accident and emergency

(as the patient),

Earlier this year I was sent to A&E by my GP as they thought I had a clot on my lungs. Whilst waiting in the A&E waiting area, I was promptly seen by a Dr and put straight onto oxygen and bloods were immediately taken.

Unfortunately for me, it seemed that was that last of the decent care that I received. That night, after x-rays, I was sent to the Bailgate ward whilst waiting for a bed on MEAU. At around 10 pm I was moved to MEAU where I stayed for a couple of days, waiting for an MRI scan.

On one occasion I was woken in the middle of the night to be examined by a Dr and to have blood taken from my arteries, which was agony. I was then left to sit and wallow. It seemed to me that it wasn't until my father rang the hospital to find out what was happening 2 days later that they then decided to start moving quickly.

I was promptly taken up to the Stroke Unit (which, by the way, has some of the best care for stroke victims in the country, really kind and friendly nurses who really do care about you). I was sent for my scan, and told I had so many clots and that, "it doesn't matter how many there are, just that they are there, and they could've killed me". After that shocking news, I really did break down thinking I was going to die.

I was put onto specific medication that day. The next day a Dr came into my room but I found it difficult to understand what the doctor said and all I could make out was 'pulmonary hypertension' and the word 'death'. Charming. I had to get another Dr to come in and explain to me what was happening. It turned out I had pulmonary hypertension as well as pneumonia. Delightful, the bad news just kept coming!

After about a week I was discharged and initially seen by consultants as an outpatient very quickly, and scans arrived quickly. Unfortunately, I have since been back and forth to the A&E Department when I've had chest pain, but this was diagnosed as muscular. I now do not bother to go to the A&E Department when I have chest pain and just take a paracetamol or co-codamol.

Recently, I have been messed around no end by my haematologist and cardiologist (my cardiologist will not see me it seems) and the questions that I ask are always answered with a very vague response and I feel none the wiser. Apparently all my tests have come back negative, and everything seems normal. Brilliant. So what's my problem I hear you ask? Well here it is...

If I have no cardiac problems, my bloods seem normal and my INR is pretty much stable, then why am I still being prescribed specific medication 8 months down the line? I should be out living my life, and working on making my life better for myself, but unfortunately, I cannot find a job because I have so many appointments that I must attend.

I have had no communication with my GP, who tells me he has tried to rush appointments through but to no avail. My haematologist keeps popping off on holiday and my cardiologist, is the janitor for all I know as I never get to see them in the whole time I've had these problems! No one is telling me anything, I am getting nowhere, and quite frankly I am going to stop taking the medication they prescribed me with and stop attending clinics until some one pipes up and tells me what actually is wrong, and why I need to be on the medication they prescribed.

I spoke to a clinic nurse today from the Haematology Department, who is going to try and get an appointment through for me in the next couple of weeks. Surely I have a right to know where I am with my own health? ! If there is something wrong, would some one please just tell me! It's ridiculous.

I will not be using Lincoln County Hospital again, and will ask my GP to refer me to another hospital from now on. I don't care if I have to travel miles, at least I know my treatment will not be pushed aside and it will not seem like I have been forgotten.

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Response from Jennie Negus, Deputy Director of Patient Services, United Lincolnshire Hospitals NHS Trust

picture of Jennie Negus

I am so sorry for your experience - you have had an absolutely terrifying time and now are struggling to get the information and support you need.

Could you contact me at: jennie.negus@ulh.nhs.uk with some more details and I will do everything I can to try and resolve these issues for you.

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