To be annoyed with my friends GP? (and can anyone help - Named referral)

[ASorcererIsAWizardSquared]

My best friend is ill, but the GP are doing so little to help her.

Her symptoms are indicative of her having Crohnes disease, mouth full of ulcers, sudden weight loss, nausea, unable to eat...etc.

My brothers DP has crohnes and spoke to her Consultant about my friend, and the Consultant said my BF should have been seen by a consultant ages ago, that the rapid weightloss and mouth ulcers alone should be screaming REFER TO GASTRO at them, and told brothers DP to tell my BF to go to her GP and tell them to refer her straight to her.

She said as its a named referral, bf's GP legally had to make the referral.

BF been to her GP today, and they have refused to refer her, stating they want to do more investigations and get her in counselling for her anxiety before they will refer her to a gastro consultant.

Quite frankly, by then my friend will be dead, she can barely eat, her weight has dropped from her being a size 12/14 to a size 6 in the space of 4 months, she is wasting away in front of us and her GPs are being assholes and there will be nothing of her left for them to refer by the time NHS counselling materialises!

What can we do? I'm lost and i cant bear to see my friend so ill and being messed around like this, the GPs can't do anything, she needs to see a proper Gastro Consultant!!

I have yet to have a patient who happily accepts a psychiatric explanation for their symptoms. Their response is always to phone friends and relatives in floods of tears saying no one can find anything wrong with them or they haven't done test X, Y, or Z, or they haven't referred to the right person, or their symptoms are exactly like such and such and why can no one see this and...and...and...

Can I suggest your friend asks for an extended appointment to discuss things with the GP?

She should take someone with her as support and an advocate. And go armed with a clear note of her history and symptoms in date order. She has to tell the GP how afraid she is, how rapid the weight loss has been (not something someone only seeing her now and then would get unless told very specifically) and her problems with eating, ulcers etc. The note has to be clear and precise in order to be helpful, e.g. 'Weight loss since 1 Jan 2015 3 stone 5'.

Then ask the GP to explain what his/her advice is. What's the treatment plan? Can it be done any faster? Is the colonoscopy appt the reason for the hold-up? If the wait is ages can she go out of area? What can she do to help herself in the meantime?

She and her companion should take notes. She may not get what she wants but surely she and the GP would both be a lot clearer about what is going on? Then if it doesn't seem satisfactory at least she has got much more info to take to the Practice Manager, or to A&E or wherever.

Tell her to go to a&e my gp told me to do this when I was waiting for months at a time for tests to confirm my suspected crohns disease.

Epheba, so now not only is she lying to me, not telling me everything going on, ignoring a diagnosis, but now its all in her head?

Gee.. i guess the 5 stone weight loss, mouthful of ulcers, constant nausea, vomiting, diarrhea and severe abdominal pain are also all in her head?

She suffers with social anxiety, she is not delusional.

Thats not a very nice attitude towards mental health problems for someone claiming to be in the medical profession.

I don't understand why there is an issue with the investigation then referral route your friend is on. She is waiting for a colonoscopy, has had other investigations and also is now signed up for help with her anxiety.

All of my first investigations were Dr led, it took about 2 years to get a diagnosis of both Crohns and severe reflux disease, that includes a prolonged hospital stay and being on a liquid diet for over a month at one point. Once I had a crohns DX I was put under the care of the consultant, as up until that point they didn't know which department I should be with, some things put you under the surgeons care for a while while they assess if anything needs whipping out etc. (I was surgeon led at first and my reflux has been surgically treated, my crohns is under Gastro)

If your friend has had all of these investigations etc in 4 months I think the system is working pretty well. Might be worth her asking about the possibility of seeing a dietician, in my area it's those guys that can help with finding the right foods but also the y can prescribe enriched shakes and juices to keep your friend as balanced nutritionally as possible while they find out what's happening.

It is bloody frustrating when they keep ruling stuff out and all you want to know is what it is so they can get started making you better. Consultant won't be able to do anything until the 'oscopy is being done.

How has reflux been ruled out? To be DX with that I had to go to a specialist hospital unit in London and have a tube inserted into my stomach for 2 days, plus a pressure/swallow test they did with a thicker tube before that. I was sick constantly, everything came back. For what it's worth it took a year from getting sick to having a firm reflux DX and a medical plan, I threw up so many times a day I couldn't count it, carried nappy sacks every where, took loads of tablets, lost my back teeth. I was very poorly, and it was frustrating, but there are waiting lists and procedures for a reason.

Owen, go and beat your 'general gp bashing' drum on someone else's thread.

Curious, what happens to those of us on the waiting list for tests when people go to A&E to get treatment faster? Do the rest of us get postponed to make room for them?

It's no wonder A&E are in such a mess if other health professionals are telling people to go instead of going to GP's.

Fucking hell I'd be raging! My ds was referred for gastro tests within a week after we saw a GP and had a endoscopy and colonoscopy and diagnosis of colitis within 2 weeks. Admittedly they arsed us around for a month with poo sample after poo sample before getting to see the GP. Anyway if she can't get a second opinion then I'd go to a&e and I never usually say that.

Red, the reflux was ruled out after a camera down her throat determined that the muscle between her stomach and oesophagus was functioning normally, and that the acid inhibitors they've had her on have done absolutely nothing to help, so they told her to stop taking them.

Whether thats the way it should have been done or not, i dont know, but thats whats happened.

Stuff has happened so quickly because we're lucky to live by two very modern hospitals who tandem care between them, and run clinic from 8am to 9pm 6 days a week to get them done.

I've got a uti scan relating to kidney stones at 7.30pm which surprised me as last time i had them done 3 years ago they only worked 9-5 mon-fri!

But she has been referred for tests, it's the waiting list that seems to be the problem.

the salient point Owen is that everyone is saying she should wait for the colonoscopy, then see where to go from there, which i will tell her.

The next mission will be to work out why that ones taking so long as the referral for that went in over 6 weeks ago and she still hasn't been given an appt, in which time she's continued to steadily lose weight.

I had an endoscopy, it couldn't determine if the muscle worked but could look for inflammation, masses, polyps etc. My sphincter at the top of my stomach doesn't work but that was determined by the tests in london. May not be the case for everyone.

I'm really sorry because I know how hard this is, I've lived it and have to go through the waiting time for tests when I get poorly or something changes and it's scary, but it really does seem like she is being looked after well by the GP, is having the tests she should be having and is being tried on different meds to see if they ease things.

I thought the majority of MNers were the sensible sort. "Go to A&E"?? It's not an emergency! I don't see why a person is entitled to waste emergency resources and get pushed ahead of the queue because they don't want to wait for a colonoscopy.

I understand your frustration OP, I have no idea what procedures GPs need to follow to refer somebody onwards but they won't let your friend die.

Thats good to know Owen (Though I know it doesn't always run so smoothly!)

It is bloody frustrating, although I always found the 'clear' tests the worst, as random as that sounds, as they hadn't found what was wrong and it made me feel like a fraud and that we would never get me better. You get there in the end though.

Wishing your friend all the best OP.

You seem particularly over-invested in a diagnosis of Chrons.

Your friend has had a number of investigations in the past 4 months, I know it's not ideal but she needs to be patient.

Given that your brothers partner is a volunteer for the Chrons and Colitis UK Charity I would imagine that means there is a wealth of information easily available via her, to your friend.

the only time she's attended A&E was when the OOH dr told her to go, the OOH here is actually located in the hospital building, and everyone who goes to A&E is triaged by a nurse before being allowed to see the A&E drs. (and it was triage nurse who sent her away again)

She's not the kind of person to go unless she is advised to or is seriously ill.

yes, there is socially, and the advice was to ask for a referral to a consultant based on the presenting symptoms, which has been refused!

I can tell you already what a gastro consultant will say; GO FOR A COLONOSCOPY! It would be a total waste of an appointment.

I have crohns and a fecal calprotectin test will establish if there is inflammation in the bowel consistent with that of a level of crohns/colitis. It's a test done via a stool sample, so non invasive and far cheaper than a colonoscopy.
I will say though that there are many tests I had to go through to get diagnosed and whilst they may be appearing to be fobbing your friend off each of these tests will be to rule stuff out or determine something.