Very helpful GP

[fantasyfanuk]

I had an appointment this morning, after not being able to get one for months, with the GP who referred me for a second opinion about why I was still breathless and fatigued over a year after having a pacemaker. I had to go to a different surgery because it was Saturday but at least I got to see him. We discussed the biventricular pacemaker I will be fitted with on 10 December and he was great and has agreed to see me every month, as I have now been diagnosed with moderate heart failure, and he will make the next appointment himself for me each time. I have been floundering as I hadn’t seen a GP since March because our surgery’s systems make it very difficult to get appointments but that problem seems to be sorted now and I am very relieved. I actually feel like someone cares and is looking out for me. Together with the second opinion cardiologist, who is taking me on permanently, I feel that after 2 years I now have doctors who listen to me and that is a good feeling finally. It makes such a difference to how you feel about your illness if you are confident about the care and advice you are given. I wish the same for everyone out there.

[chubby2x22]

You are so lucky, I've was told I have HF in September my g.p fast tracked me to cardio but still no appointment. I feel quite unwell and very tired, going to try for a g.p appt this week, like you I would appreciate some care and advice. Jane

[Calliope153 in reply to chubby2x22]

I think we all feel the same. It's the isolation we all seem to have to deal with and this forum helps enormously with that. However, the lack of appointments (GP and cardiologists) and the waiting time to get things sorted out adds to the stress and, I suspect, some of our symptoms. I have coped better since i realised I am entirely on my own and will have to be forceful (or as one person put it "formidable") to get seen or the necessary advice. I don't apportion blame to the medics at all - the sheer volume of work they are supposed to get through is unreasonable and the administration is generally woeful. Add to that many patients waste appointment time by not turning up (I was fast tracked to an echo scan one evening - when I got there I was the only one - the previous three appointments had not attended and the one after me hadn;t shown up when I left. This despite a phone call the previous day asking if the patient was definitely attending this extra evening clinic). However, on the bright side some of us are only here to complain because emergency care is outstanding!!

[fantasyfanuk in reply to Calliope153]

Yes I totally agree. Without the emergency care I received initially I don’t think I would be around now but you definitely have to push and stand your ground to get somewhere at times. I’ve been diagnosed and am getting different treatment now because I kept saying I’m still not right and got a second opinion. This forum is great for me because I don’t post a lot but read loads of it and when you feel the professionals are not listening to you, people on here do. Thank you.

[fantasyfanuk in reply to chubby2x22]

Hi Jane, I’m sorry you are having to wait for a cardio appointment, fast track seems like a bit of a joke when it takes so long. Initially I was taken ill quite suddenly and my first contact with cardio was as an emergency in a&e then had a pacemaker the next day. However I have done my share of waiting since! Whenever they say I’ll see you and do an echo in 4-6 months it’s always at least 8 months. I did though work as a PA to directors at our local hospital for a few years and saw the difficulties management are under in trying to meet targets with not enough money or staff. I do sympathise very much with the NHS but think communications should be so much better. Even if they told you where you were on a waiting list, at least you would know they were aware of you. I tried quite a few different GPs at our surgery before finding this one, so hope you find one soon who will properly look after you. Helen

[Lezzers]

If you're in the UK, under NICE guidelines you should be referred to a HF nurse if they're in your area. Ask your GP for a referral, they are invaluable for support, care, arranging appts, meds etc.

[fantasyfanuk in reply to Lezzers]

Thank you. Yes I am in West Yorkshire and did ask about a HF nurse, as I had read in the forum that their help was very useful, but the gp said they were only available for those with severe HF of around 25% ejection fraction or less. And currently neither of us know what mine is, as the letter the cardiologist sent me didn’t give a figure - the gp hadn’t even received that yet and I had to show him my copy! He said he will receive a copy of the echo and will know the figure then and will tell me but I’m due to have the biventricular pacemaker fitted in 10 December so can also discuss it then. Just wanted to say I really love all your posts, they are so helpful and supportive and are much appreciated.

[Lezzers in reply to fantasyfanuk]

Thank you so much, that's very kind of you to say so. Now, I'm not an expert but I think your GP is wrong, HF is HF regardless!! my husbands EF was 35/40 classed as moderate when he was assigned to a HF nurse, his EF is currently 30, though he has now been discharged from her because he is stable but he is able to phone her if necessary. Can I suggest you have a look at the Pumping Marvellous website, it will tell you if the nurses are available in your area, if they are I think I would try calling them for advice or maybe speak to the BHF nurses. Good luck.

[fantasyfanuk in reply to Lezzers]

I can see there are HF teams at my original hospital and the one I’ve been transferred to but the GP maybe can only refer in the area I live in, although the new hospital is only ten miles away. Also I wondered if this was a financial thing and they only therefore refer the more severe cases. I’ll do more research including reading the NICE guidelines. Thank you for the help.

[Maisiemay13]

I work in a GP surgery the amount of people who do not turn up for appointments is extremely high,we send out text reminders and if we know the patient might forget call them.

[fantasyfanuk in reply to Maisiemay13]

It’s really frustrating for everyone and such a waste of appointments that other people could have had who might need them more. On the other hand I guess it gives the doctors/nurses a bit more time to deal with the endless paperwork!

[Gladwyn]

I'm glad for you and envious too. I've decided my surgery has adopted a policy of ignoring older patients. One new Dr called me in to see him purely to get me to sign a DNR. I refused.

[fantasyfanuk]

Many thanks for the kind thoughts Jo. I totally agree that a good level of care is crucial to our wellbeing regardless of treatments or improvements in the conditions we have. Helen

[GracieOS]

Well done in getting this sorted. It's good to feel listened to and feel someone cares.

I was diagnosed with moderate to severe heart failure in October 2018, aged 55. I waited until September 2019 to get an MRI which I had nearly 7 weeks ago now. I still do not have the results of that scan. I have a heart failure nurse and she is chasing. It's terrible being left in this limbo land, it's like your life is not important enough.

I have rheumatology arthritis as well and have been taken off control drugs, hence my arthritis is flaring up. My rheumatology consultant will not look at drug options until she has seen the MRI report. No one seems to care that I'm left in pain.

I don't blame anyone, I do believe it's the pressure medics are under due to too few staff for the number of patients. But that still leaves me feeling uncared for and it makes a bad situation worse.

I'm thinking of taking out a loan and going private, it is my one and only life after all and I'm only 56.

[fantasyfanuk in reply to GracieOS]

That’s awful to have so long a wait just to have the test and then still be waiting. Have you tried PALS at the hospital you had the scan at? At our local hospital they have always been extremely supportive and can help move things along sometimes. I agree about it not being anyone’s fault but if it was them or their family left in pain, they would want things to happen sooner. It’s sad we have to fight for ourselves. I was looking for someone to see privately when my GP agreed to refer me for a second opinion to a consultant I found who specialised in my type of problems at a larger hospital in a nearby city. Otherwise I would have paid just to get to discuss it with someone at length. I was never bothered by what my diagnosis might be, I was just desperate to know what was wrong and was actually really pleased when I found out, as you know what you are facing then. I do hope you get some help soon.

[Ianc2]

You have a member of parliament. Take some friendly voters along with you and ask her/him what steps are going to be taken to improve matters?