What can I do?

I’ve just past 75 and was diagnosed with HF back in July this year. The diagnosis of AF followed a few weeks later. The hospital referred me to the local HF Team and, my GP appeared to feel that it was a good idea. On a subsequent appointment, she made a a point of asking if the HF team had been in touch with me.

Overall my experience of the HF Team has been a good one. There have been a number of changes of medication, some of them driven by negative side effects that I experienced. These were mostly continuous diahorrea. However, we now know that I have Diverticulitis, something my GP knew (It’s a long story) but neglected to tell me! I’ve adjusted my diet, to include more fibre and the diahorrea has virtually disappeared. Some of the changes of medication might have been avoided, had I known of the diverticulitis sooner.

Recently my HF Nurse told me that my medication would change again, to include ‘dapa’ and ‘Entresto’. I’m aware that ‘Entresto’ is very expensive (Around £100 for a month’s supply). My GP has dragged her feet adding ‘Entresto’ to my online medication list that I order repeat prescriptions from. Last Thursday, I was told by the GP Surgery that I needed to attend an HF/AF review. This has not been mentioned previously. I half expect to be called back to the hospital for a check at some time in the future but, I thought that the HF Team would be responsible for my treatment in future.

I believe that the cost of the ‘Entresto’ has driven the GP to get involved.

Three questions arise from this situation:

* What can I do, if my GP decides that her practice doesn’t want to pay for the ‘Entresto’?

* What can I do, if my GP Surgery says I need to take a particular course of action and, my HF Nurse says ‘No’,?

* Has anyone out there experienced similar situations?

[RufusScamp]

I have been on Entresto for a couple of years. (Aged 70) The cost has never arisen. My EF has gone from 20% to 60%, and my cardiologist has discharged me. Best of luck with getting help.

[VelvetSky]

Hi, go back to your Consultant and explain the situation. Last time it happened to me my Consultant laughed and said he outranked a GP, I’ll write to them and tell them it’s essential for you. It seemed to work I’ve had the meds on prescription ever since.

[BlueJRW]

Hi, I've been on Entresto for about two years. After my Cardiologist recommend it the local heart failure team managed the introduction; starting on a low dose, the medium and then full dose with monitoring of BP and blood tests all the way. The GP has to accept you need it if your heart care team say so, remember it's on the NICE approved list. The pumping ability of my heart improved and my Cardiologist said there is case for coming off this drug. However, there have been studies that show when the drug is withdrawn some patients see a deterioration of the hearts pumping ability, so he's keeping me on Entresto. Hope this helps, good luck.

[Hidden in reply to BlueJRW]

Thanks BlueJRW, that’s really helpful. This thing of heart failure is really new to me. Other peoples ‘ experiences are vital because I find it difficult to get information out of, in particular doctors. I’ve always asked questions but rarely got satisfactory answers.

[BlueJRW in reply to Hidden]

I have to say it was new to me in November 2019, Christmas in hospital. Thankfully I had medical insurance through the company I worked for and saw a top notch Cardiologist. Made sure I followed him when he moved NHS trust.

[Hidden in reply to BlueJRW]

I have no problems with my cardiologist. He was excellent, listened to me, answered all my questions and, had a super sense of humour. Likewise his staff. Further, I was in a teaching hospital and, a lot of this guys trainee doctors seemed to adopt many of his good points. My problems have been primarily been with my GP. She seems reluctant to pass on useful information.