Got this snotty e/mail from consultant, how to react [angry]

[emkana]

Have already posted this in Health, but on second thoughts should have posted it here, so here goes

The e/mail reads:

"I gather that you have been phoning to find out how referrals etc are progressing for Sebastian. I have not heard from the Radiologist in Bristol and assure you that I will write to you as soon as I do.

As far as the referrals are concerned, you have to understand that unless we feel something is urgent, there is a time lag between you being seen in clinic, me dictating the letter, it being typed, me checking the letter, it being sent and received and an appointment sent out. All this can take several weeks, so please bear with us a little longer.

I do understand your anxiety about Sebastian, but I must urge you to trust us that we will contact you as soon as there is any news on his X-rays and that Bristol will contact you when the letters are received."

I saw the consultant 19 days ago, and phoned up last Friday, yesterday and today to find out what was happening because I hadn't heard a thing.

And that bit where she says "unless something is urgent" - FFS ds has been unwell every single day of his young life with respiratory problems, but oh no it's not urgent to refer him to a lung specialist, not at all.

And he has problems with head control, but no, physiotherapy not urgent either. Take your f*ing time by all means.

I am , can you tell?

Funnily enough she wrote a second e/mail 90 mins later in which she had suddenly read the letter from the radiologist in Bristol. How convenient that it happened to arrive just then, I'm sure it hadn't been lying around somewhere, oh no...

Radiologist unable to make definite diagnosis btw, so no news there.

I also object to the fact that this consultant addresses me by my first name but signs with Dr. X. Probably petty, but still.

I am so f*ing livid, what am I going to do now?

It's supposed to say I am

Really on your behalf as well. what a pile of condescending poo!!!!!!!!!!!

Mardy bint. think your right to be offended.
did she arrange to email you i can't imagine any of ds's Dr's even knowing how to email.

i'd replysaying that although you understand that these things take time, your son's condition remains untreated until you can get a firm dx so if your a little impatiant your sorry but to you its a lot more important than etiquette
and sign
MRS XX

Emkana, is your GP onside? This is where a good GP can be a lifesaver, since they can do all this chasing for you which saves you the trouble. And they'll get better information minus the snotty brush-offs.

Unfortunately the GP is not that great and not very helpful. I always feel as if he wants me gone as quickly as possible.

Dh has private health insurance through work. I don't know how this would be helpful in this/

Message withdrawn

Can you change GP, em? If at all possible it's worth putting out some serious feelers to see if you can locate a better one and persuade him/her to take you on.

I acquired a good one after five years of struggling with an obscure medical condition, and it transformed my life. They can decode the bullshit, identify when consultants are talking out of the fundaments, hassle, chase and write stroppy letters for you. And consultants will talk to a GP in a way that they won't talk to Joe Public.

I know it's not the health system you're used to, but you won't get the UK system to work like the German one.

And remember that this is the hardest phase. It will get easier as you get more information and get more adept at dealing with the system and the medical condition.

Hugs.

Emkana, am surprised you do not know that the best way of getting good service from the NHS is to leave them to their own devices.

NOT

As I know, and you know only too well, it is a constant bloody battle to keep the pressure on, to keep your case at the top of the pile, to keep them even vaguely remembering that you are a real person, a human being, a mother with an ill child, not a f*king statistic.

I should add, some of my good friends are doctors and I also know from their perspective that workload plus inefficiency makes it incredibly difficult for them to deliver the service they would like to. Not to mention, there is a thin line between being usefully assertive and overly aggressive - not suggesting I think you have been, but I am always aware that if I push too much it will backfire on me. They hold all the power, and I hate that.

I think you should respond (once you've calmed down) and say that you dispute their definition of urgent, listing the timescales etc. I would also do so by letter, not email, and copy in the appropriate person from the complaints procedure at the hospital, just for information at this stage. PALS will be able to tell you who that is.

Christ, I nearly wrote to complain because a pain-in-the-arse consultant we saw recently for dh kicked one of ds' toys during the consultancy! On that scale I'd be round firebombing the consultant's house if I'd received such an email. (Should stress, would not actually do that, particularly as a victim of arson in days gone by).

I am really angry and I'm glad that you don't seem to think I'm overreacting.

I don't know whether I have the energy to do anything, I just feel quite despondent about it all.

Why is it you who always has to deal with things though? Couldn't dh respond to this letter? Think you have enough on your plate

Dh prefers the head-in-the-sand approach to the whole situation.

Seems to me that in the time it took to write the two mails she could have dictated the letter.

How do you think you'll deal with it?

I just don't know (sigh)

Thanks dinosaur, I will probably do the "nice but worried" thing, knowing what I'm like.

How do I change GP though? Want to stay with local surgery really, so convenient.

I'm still mulling it over. It's a tricky one. The thing is not so much how to retaliate/respond but how to get them to do what you want and since this consultant is already annoyed, I'm not sure how I'd go about it.

So now she has the diagnosis from the radiologist, she could in theory send out the referrals tomorrow if she saw fit?

She doesn't have a diagnosis though, as the radiologist is unsure.

The referrals are a seperate thing from the diagnosis, she said three weeks ago that she was planning to refer ds to lung specialist and community paediatrician, irrespective of the diagnosis.

I really don't understand why she's annoyed though.

no you are not over reacting - you have a little one that you are very worried about. Hey I lost it when dd1 was having cardiac surgery and told the consultant that this was just bullshit and if someone had listened to be earlier in the day they would not be torturing my daughter and she would not going back to ICU with another bloody chest drain!!!

I had to then go for a walk down Kings Road Chelsea at about 9pm to just calm down - dh was worried I would really go off!!

Just a thought if you have private health insurance - can you not self refer to a physio and at least get that started privately.....

We have to pay £350 excess so we have to think carefully about using the private health insurance.

I honestly don't know, but wouldn't a physio need a proper diagnosis first? I would have thought there'd be scope for doing damage if the physio didn't know exactly what was wrong

I suspect she's annoyed at having to deal with a patient directly, tbh, emkana. The system is generally set up so that consultants don't deal with day-to-day patient contact. Which is where a GP comes in. You can change GP within in group practice simply by making an appointment to see one of the other partners -- even if you're registered with one Dr at a group practice, you're not bound to that individual.

To go further afield just involves filling in a form that the new surgery will give you. I think what you're looking for here is a female GP who has or has had children herself, and will take the time and the headspace to get your situation sorted out. Tbh if I was in your position I would expect the GP to be listening to my concerns, decoding consultant-ese, chasing up diagnoses and tests. Come to that I would also be expecting the HV to be dropping round on a regular basis, and probably to be taking my child in to baby clinics with HV/GP /Practice nurse all singing from the same hymn sheet so that the whole family was getting the appropriate support. You shouldn't have to be dealing with this yourself.

The only other alternative to GP-centred care that I have come across is a specialist hospital clinic that is a centre of excellence for a particular condition. If that exists, and you can get yourself in there, then it's worth travelling the length of the country for. Clinics of this type are likely to have more user-friendly consultants and/or a team of specialist nurses who will deal with a lot of the patient interface and day-to-day medical issues while the consultants deal with the bigger picture.

I don't think your experience is unusual, tbh. I've had problems in each pregnancy setting up an appointment with the neonatologists antenatally to discuss the known risk to newborn health that are associated with my medical condition and how they were planing to manage it. With dd1, the only way I finally got to speak to the consultant was because I was working in the associated university and as a last resort I picked his direct extension number from the internal phone directory and called him direct. He was not pleased, to say the least, but I was past caring by that stage. By my third pregnancy we were still having the same problems, but my GP wrote them such an incendiary letter that, although I got the appointment by return of post, I thought I should probably go in with a flak jacket.

Good point tamum.

Very interesting what you're writing, frogs. At our surgery they are very insistent that you only see the GP you are registered with.
HV very nice and trying to see us regularly but seems to be on leave all the time.
I was actually just considering contacting the radiologist directly to ask a few questions - do you think he will shoot me down if I dare to do that?

I think you will have to develop a thick skin because by the sounds of things you may have to deal with specialists for some time and may be coming up against this kind of thing again and again. I know you want to feel like you're doing something but I'm not sure the radiologist will be much help, you may end up more frustrated than you feel now. If you keep that at the back of your mind though, go ahead and try.

Thinking longer term, a good GP who takes time for you and gets involved is going to be worth his/her weight in gold. Especially if in situations like this, the GP will chase things up for you. Travelling that much further to see someone you trust is going to pay off, you know. Really I think it will. My mum had a fantastic GP and she would have had so many more problems in her (unsuccessful) cancer treatment if her GP hadn't got so involved.

Where to find a good GP though? [sigh]

First of all I will reply to the consultant and ask for a copy of the radiologist's letter.

Pay the £350 and go privately Em

IME there is a shocking difference of attitude to an NHS patient cf a private one.

If you go privately most of the correspondance between teh various medics involved in your case is copied into you. And long explanatory letters are the norm not the exception.

Appointments are usually scheduled for 30mins per patient - not 6 mins more typical in the NHS.

It is a truely sorry state of affairs, but in your position I would not hesitate for a minute!