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?

Would you consider getting private tests done?

I'm sorry you're going through this. I went through a similar experience with my mum, who was also in her 60s, and my view of the NHS is at rock bottom as a result.

However, there are things you can do to help. Firstly, what is the consultant's speciality, and what were the last lot of tests for? If the consultant is hospital-based you could contact PALS (Patient Liasion Advisory Service) who are based there - the phone number will be on posters all over the hospital, or ask for it at the reception - and explain what's going on, and ask if they will mediate on your behalf, or come with you to the appointment to explain things to your dad if your dad is happy with this.

Tell the consultant exactly what you've written in your post, but don't get angry or antagonistic. Cry if you have to. Explain that your dad feels as if he's dying and there must be something more they can do. Ask if there are any diseases which mimic other diseases that haven't been tested for yet, or rare conditions that could be causing the problems. (just as an e.g. - myeloma - a type of cancer - mimics osteoporosis in many cases; I know this isn't what your dad is complaining of but it's one I'm familiar with, and my mum was misdiagnosed for months because the symptoms were the same as other, less serious, conditions).

Finally - it could be stress-related, you know. It can be really, really debilitating. I'm interested to know why you're so adamant that it isn't stress?

Or it could be things like ME / chronic fatigue, or fibromyalgia/polymyalgia. All worth asking about.

I would like to stress that, IME, getting cross/pushy does NOT help. You have to do it calmly and politely, no matter how much you feel like screaming and punching someone.

Re. the GP: could you and your dad go and talk to him/her together and express your concerns?

Good luck, I hope you get some answers soon.

Thanks for that, Mrs, there's some good advice there. I don't think it's stress as my Dad's life now isn't particularly stressful (and he has had insane periods of stress in his life, such as losing his own business, and was fine), and he also has a very positive attitude to life - well, he did until he started being ill for such a long period (he is very down now, as anyone would be if they were ill for so long). Basically, he got really bad flu a year ago and just hasn't recovered - to me that suggests something viral but so far they've not gone down that route at all.

I think like you I am also worried they're just writing him off. My experience of the NHS with my Grandma was appalling - they treated her like s**t, bascially because she was old and therefore not worth bothering with. I just don't understand how the so-called 'caring' profession can be so bloody callous when it comes to anyone over the age of 60.

But thanks, I will remain polite! I generally am, to a fault, as is my dad. I think we just have to be a lot more persistent, don't we? Plus my dad has now agreed for me to come with him to his next appointment - I'm hoping that having a second person in the room will force the consultant to get on and do something. His GP is rubbish, just doesn't see what the problem is at all.

Gumby - we just don't have the cash. My Dad is a pensioner, I am just back off maternity leave with two small kids.

I second PAls. They have literally saved my Dads life twice. They were fab. My experiences with the NHS over the last 8 years with first my grandmother and then my father has convinced me that there is an unwritten policy that over 65s don't really count, unless there is a family member behind them kicking up a stink.

What do you want them to do?

Not a sarky question, but genuinely what more do you want them to do? It sounds like he's had lots of tests and he has an appointment in 3 weeks, which isn't that long really. When you go for the appointment with him you need a list of questions and ask the consultant to address the issues with you.

I don't think age is the issue, he's positively spring-chicken-like compared to most of the NHS's customers and I doubt very much that they are going to write him off in his 60s.

He may well have some sort of post-viral fatigue syndrome which is very hard to diagnose - it sounds like they have tried to exclude more serious problems such as cardiac, cancer, hypertension etc. I don't think 2 months is that long to wait for a review TBH but I appreciate when you or your loved one is unwell it seems forever. And IME no news does tend to be good news, as if they'd found anything sinister they'd have had him back sooner.

I understand your frustration but would recommend a calm, measured approach to his appointment. If you go in planning to 'kick the consultant's arse' I think you'll find yourself asked to wait outside...

I do hope you get some answers soon.

Do you have a good relationship with your own GP? If so, ask them what they would do in your circumstances. You can make an appointment telling them you're getting stressed by it all if you need an excuse to see them. I talked to mine when my mum was ill and he was incredibly helpful. He gave me a list of things to ask/ ways to approach her specific problem.

Obviously you can also ask for a second opinion if the consult yields nothing.

Just to say on NHS though, that I think they're fantastic - I can see you've had a tough time, but they have literally saved my life over the last year or so, as I have had treatment for Breast Cancer. Have also had an op on my spine and they were amazing through that too. The way forward is to get to the right specialist. Once you're there, they're usually brilliant. Easier said than done I know, but diplomacy, smiling and persistence works imo. Good luck!

Has depression been considered? - some of what you have written in your post brought that to mind.

Thanks everyone. sidge it's not 3 weeks, he had the tests in November & we've been waiting until 25 Jan for the results, ie two months. What's the point of having tests done if you then have to wait so long to find out what they uncovered? So I'd like them to hurry up! No one will do anything more until we get these results so my dad is in limbo.

And while I agree the NHS can be brilliant we all also know it can be truly awful, & I have sadly experienced the bad side both with my post natal care & with my grandma, who was treated appallingly & eventually died.

I'm going to be nice to the consultant, of course I am, but I'm going to take the advice here & also get in touch with Pals. The idea to book an appt with my GP is also a good one, will see how the consultant visit goes & then talk to my GP.

Has he had a full medication review recently? In some areas there are teams of community pharmacists employed by the NHS who do this, and sometimes uncover some alarming situations...

Sorry to hear about your Dad. There are many stories like this about the NHS from younger people too - it's not necessarily about age, it's that they seem less interested in the cases they can't diagnose and treat as easily as others.

I'm sure that if anything life threatening had shown up on your dads tests they would contact him before 25 Jan especially if there was something they could do something about medically or surgically.
Dare I say it, sometimes there may not be an answer to what is wrong with your dad.
I think people sometimes think there ALWAYS has to be an answer.
Hope something good happens to help your dad soon.

PALS are brilliant at getting things done. They have helped me big time before when I was waiting for a cancelled op reschedule.

Has he had blood tests as well? Maybe it could be a thyroid problem? He has had quite a lot of NAD tests hasn't he? Just agreeing with bearcat here. You mention as well he had a nasty bout of flu last year that he didn't get over completely, it could be a post-viral fatigue which doesn't tend to show in tests. He should probably also see his GP perhaps regarding depression.

Sadly bearcat I know from very bitter experience that's not true - try lung and bone cancer for starters (in my grandma's case). We finally got a diagnoses for her after being fobbed off for months and months (with 'lost' results being one of the problems) - and two weeks later she died. At least by then she finally got some decent pain relief.

And I'm sorry, but if you felt like you were very, very ill for over a year, wouldn't you want an answer? Or would you just sit there and accept that your quality of life had been reduced on some days to practically zero because 'there may not be an answer' to what's wrong with you? Er - no, you wouldn't.

nappy really sorry to hear about your grandmother.

Agree with birds. Unfortunately there's a great deal of fobbing off, and "we can't find anything wrong" for a long time, when actually there is a very real reason for the symptoms. Bitter experience here too.

OP, what is the speciality of the consultant he is seeing? I agree with a PP that age wise he is a slip of a lad in NHS terms.

I would also say that his symptoms sound like they could be post-viral exhaustion or depression. If his GP isn't taking this seriously, see another one.

Also it could be helpful if he started keeping a diary whic could show anyway patterns. Does he feel better/worse in the morning, after eating etc.

Thanks jester, and sorry you've had a bad experience too.

queens - cardiac at the moment, though he's also had a lot of blood pressure related tests too. One of the things that's bothering him is that the symptoms coincided with them changing his BP drugs (as well as having a nasty bout of flu). I suspect it's something viral but because his father did in his 50s from a heart attack, they're convinced it's either BP or cardiac. The tests he had were pretty scary - had to go in, was told if he had complications he'd end up in ITU - and so after winding him up they've just left him dangling, feeling like crap and shit scared his heart is about to go. I agree in one way that if the results were bad we'd know about it but having had experience of lost results I'm not 100% sure, plus if they're all negative we're back to square one and no further on.

Good idea about the diary. He always feels worse in the morning.

died not did!

I'm not a doctor but if someone is 60+ and showing signs of deterioration in health wouldn't one of the main things they would be looking for be cancer of some kind? Has he had tests for that? (like Xrays, an MRI, CT Scan). Don't mean to alarm you OP, maybe that has been ruled out already?

Hope your dad and you find some answers OP x x x

Reggae this is what I am worried about. They have tested for prostate cancer but only after my Dad kicked up a fuss - his brother has just been diagnosed with it - but that came back negative. But they haven't looked for any other forms of cancer. This is why waiting two bloody months for test results is so frustrating, because what if he does have cancer of some sort, and by the time they find it (as happened with my Grandma) it's too late to treat it?

The NHS aren't really in a position to be doing full body scans to check for cancer just because somebody has been feeling run down. Let them exclude other things first.

Birds, is it possible that his current BP meds are making him feel this awful? My Dad's meds were changed and he started having awful side effects and felt dreadful - weak, faint, etc. This in turn, without explanation, would cause stress and more feeling awful.

IME, when feeling awful, there is nearly ALWAYS some sort of physical reason - but that not knowing what that is is almost guaranteed to make the symptoms worse! Peace of mind is hugely important, and not all GPs understand that (mine does, thankfully).

Have you checked out the side effects of your Dad's current meds? I'm sure you have, too obvious I know, but just in case....

You have mentioned BP meds which an cause huge mood swings and depression in some people.
My Dad on retiring was sick constantly for 12 months, flu, aches, pains etc
We are not in UK so pay for GP etc He had a full review of all tablets by a pharmacist and it turned out that they were interacting with others and causing some of the problems, he had mild depression lack of work routine BP meds were to strong [he had had a very stressful job] once all these were changed he became a new man, he can get through the day with out needing a nap, he has taken up a hobby which gives him a reason to get up and go out and he can play and even babysit his dgc. He still has some mild depression but it is manageable and getting better all the time