How the feck can I get the NHS to help my dad?

[Birdsnotbees]

My dad is ill. No one seems to know what's wrong with him. Until a year ago he was running 4 times a week, & also cycling regularly. He doesn't smoke, rarely drinks. He is in his late 60s.

He has high blood pressure, for which he has been on a range of drugs. But for the past year he's felt like he has had permanent flu and is feeling worse and worse. He has had heart tests, more BP tests, prostate cancer tests - nothing has come back. One consultant suggested it was 'stress'. It's not.

I am watching my dad get more and more ill. He has gone from this fit, lively man to one who struggled to take part in our Xmas celebrations, or play with his beloved grandson. It is breaking my heart.

His last lot of tests was in late November. He has pushed and pushed for the results and finally - finally - got the date through: 25 January. His GP just said, 'well it probably means nothing showed up on the test results', which frankly is insulting as a) pretty often the NHS loses test results and b) if nothing did show up then he'll need further tests, for which they have now made him wait two months.

Two months when you feel like you're dying is a long time.

I have convinced my Dad he now needs to start being a pain in the backside - up til now he has been patient and put his trust in the NHS. I personally think they are writing him off as 'old'. I am going with him to kick the consultant's arse on 25 Jan, but have also told him to insist to his GP that the date gets brought forward.

What can we do to get the NHS to take my Dad's case seriously? He honestly feels like he is dying and no one gives a shit. In fact, I feel like he's dying and I am so angry that it has been a year and not one of the GPs or consultants he has seen treat his case with any sort of urgency. Is this just because he's old - is everyone in the NHS like this with old people?

What else can I do? Is there anything else I can do?

There are quite a lot of cardiac conditions that have a genetic condition. On some, the treatment is very high doses of statins. Is your Dad on statins?

However I would be aiming to get a better level of care from the GP rather than the consultant. The consultant most probably doesn't know your Dad is feeling so rubbish. I would get your Dad to go back to the GP at least once a week and seriously consider changing GPs. Some GPs are really mediocre.

You are also perfectly entitled to speak to the consultant's secretary. Just phone up the hospital switchboard and ask to be put through.

In my non-clinical opinion, it doesn't sound like cancer. Also cardiac and BP are pretty much the same thing so at least he's seeing the right consultant.

Ednurse he is not just feeling run down. He's been feeling dreadful for over a YEAR. He can't run anymore, he can't cycle, some days he can barely get out of bed, he feels like he has permanent flu. And we are not asking for 'full body scans'; we are simply asking for someone, anyone, to take his case seriously.

There is a big difference between feeling a bit run down and, actually, how genuinely shit my dad is feeling. He feels like he is slowly dying.

Elibean he has tried quite a few new BP meds now - there was one that made him feel even worse so he stopped taking them and re-started on his old ones. He's been on BP meds for about 3 years now so they predate the current illness, but they have re-checked the meds situation as part of this (also did some BP tests, and it's one of those we are awaiting results for among others).

Thanks everyone who has give constructive advice here, and even just a bit of sympathy. There really is nothing worse than feeling horrible and having people just dismiss it like it matters not one jot.

Absolutely, Birds. Not being taken seriously is just awful when you feel ill (or any other time, for that matter).

Is there any option (sorry if someone's already asked) for him to see a private GP? Or just a different GP? Funny how when people are sort of 'classified' as cardiac patients, or diabetics, or cancer patients, or whatever, even the professionals tend not to think out of that particular box. It does sound possibly viral, or immune (ME etc) or something - doesn't have to be cardiac-linked.

I presume he's had full blood counts done?

And liver function, thyroid and kidney function test?

It does sound quite like ME, post viral fatigue or possibly fibromyalgia I'm afraid. If you google the support groups they have lots of really useful information on their websites. I had post viral fatigue last year and it was unbelievably debilitating. I could barely get off the sofa for weeks at a time and as a working single parent, that was no fun at all.

Is there anything in particular that you feel isnt being taken seriously? From what you have said it sounds like he has been investigated to some extent. They would not have done an investigation that could have resulted in a need for ITU if there wasnt an interest in finding out what the problem is.

Where do you feel that the difficulty lies - is it with the cardiologist, or do you feel that the GP is taking an overly narrow view of things?

Just a thought, but is he on Statins for cholesterol? My dad was put on some which turned him into a zombie. Was awful, but stopped as soon as they switched him to a different drug.

OK, we got to see another GP at his practice and he was much better - actually took my Dad seriously (who also, for his part, spelled out exactly how he was feeling).

My dad was on statins but recent heart tests showed he has no heart problems, so the GP has taken him off those and the BP meds for 3 weeks, until my Dad sees the consultant. Dad has a BP monitor at home, so he's in no danger.

Apparently the consultant said for Dad to have a brain scan but no one told my dad, so the appt wasn't made. This has now been done. We're not entirely sure why or what they're looking for - another mystery we need to be solved by the elusive consultant.

Dad's feeling much more positive about things now. I think just being able to have someone (the GP) listen to him properly helped. And he's keeping a diary, which someone here suggested, and if the appt with the consultant doesn't go well, and coming off the drugs makes no difference, then there's a lot of advice here to follow too. And we're sticking to this GP like glue from here on in...

Thanks again to everyone for advice. Really very much appreciated.

I was going to agree with others that it sounded post viral - i also had this and it was awful. I was so ill at one point icouldnt get out of the bath.

Glad youre getting more help from the gp now though. make sure the diary includes activity, sleep patterns, food, etc - basically a running commentary - helps to identify patterns.

One other thing that occurred to me though (only cos i know someone else who had similar issues and was referred for heart problems but it wasnt) how is your dads sleep? Could it be sleep apnea?

Glad someone has listened and things are moving forward. I had similar experiences (and am younger). I think it is trickier to get looked after well when symptoms fall into different specialisations ( cardiology/ rheumatology/haematology etc) and clarity of the full picture is lost - ie that your father is feeling very unwell.

Thyroid? ME? Depression?

Sorry to hear that you are all having such a horrible time.

It's not uncommon for it to take a while to arrive at a diagnosis, which is frustrating as people want to know quickly.

There is a saying in medicine that "common things occur commonly" so the obvious will have been looked for and excluded.

It wasn't insulting of the GP to say that the results must have been OK or you would have heard by now, he was being factual. Having said that, some Consultants are better at being organised than others, some rely on their secretary to ensure that investigations get booked and that results get put into the Consultants in tray to be seen. If said secretary leaves or is off sick then it can cause havoc. I have seen some real cock-ups due to Consultants having too much to do and no secretary.

What precisely are his symptoms? Flu is a high temp (above 38), muscle pains, fatigue etc. If you Dad genuinely has had this for 12 months non stop he would have been admitted by now. Why can't he get out of bed? Is it dizzyness, loss of balance / co-ordination, pain?

Does he have any "red flag symptoms" ie sudden unexplained weight loss, bleeding from somewhere, persistent cough? Does he smoke / drink alcohol?

It can be helpful to describe specific symptons rather than just say "crap" or "feels like dying". Sometimes it can be useful to keep a symptom diary.

Let us know!

Sorry have just seen that you are already doing a diary!