"I feel I would be better cared for elsewhere."

I was first admitted to The Queen Elizabeth Hospital back in March 2017, a month after the birth of my daughter with suspected Post-Partum Cardiomyopathy. I have to say at the time the care by the consultant and the staff in the Cardiology Department I felt was very good. The consultant shows a real empathy towards his patients and you get a sense that he actually cares and is trying to do the best he can for you. I felt like I was in safe hands.

I was sent for an MRI Scan which showed an Ejection Fraction of 35%. I was reassured this was PPCM and that they would hope to see an improvement after being on medication for 6 months. The MRI would be repeated in December 2017.

Fast forward to Decmeber 2017, the MRI has just been repeated. I've not yet got those results but a heart scan has shown that there has been no improvement in my hearts function on medication. At the start of my heart investigations (4 years ago at NNUH) my hearts function was mildly impaired, 4 years later it's now moderately impaired. How long before it's severely impaired? Will somebody act then?

Unfortunately I am now in the position where I have been told it is not PPCM like first thought, but most likely Dilated Cardiomyopathy. I have been told that I am being sent for a referral to a specialist at Papworth Hospital. Yet when I have rung the consultant's secretary to chase this up, they make me aware that no such referral has been made, no follow-up appointment with the consultant has been made and they can't tell me anything at all. Frankly having to deal with this secretary is more hassle to the situation. The secretary is rude, unhelpful and it is very obvious that they can not be bothered to do the job they have. I wish I could say that they have the odd bad day but everytime i encounter them, they are like it. It makes it extremely difficult to get any information and leaves you in a position of despair because they are the point of access to your cardiology consultant.

I am now at a loss as to where to turn. I have spoken with my GP and I am trying to access my health records via Access to Health in the hope I can gain a little control over the situation because at the end of the day if I am not willing to fight for my health, who is? At this point in time I feel I would be better cared for elsewhere.