Why do you have to beg doctors sometimes to do tests? Or is my experience unusual?

[ReenaGee]

I am under neurology for right sided weakness, and hyperreflexia. Ruled out MS and spinal issues with MRI and NCS. Appt time to see neurologist for follow up is 45 weeks (argh). Neuro letter even stated I needed bloods. So won't see neuro until then. Tried my GP and asked to consider deficiencies and ask for blood tests. They sent the footfall form back and said no, neurologist has to order it. I booked appointment again stating anxiety over symptoms to get an appointment and they then, told me I have health anxiety and wouldn't order bloods. This was a few weeks after first appt and symptoms the same. A few weeks later booked another appt, weakness the same and can't think properly. Again, told likely fnd or HA and to get counselling. Booked a private blood test as getting fed up, cost me over £100. B12 and folate through the floor (like really through the floor). I take B12 daily so will need injections as clearly can't absorb it. GP ordered their own tests so they have NHS ones which showed the same. I don't understand why I had to beg in my final appointment. Is it normal to refuse to do anything when under another specialty, even routine stuff like bloods?

I'm so glad you could afford to pay for the tests you needed OP. It's a terrible state of affairs when you are left deteriorating for want of a simple blood test.

In my case my son was referred to a paediatrician due to mouth ulcers, nausea/stomach & bowel pain and raised platelets levels, low weight etc etc.

The paediatrician refused to any tests (I now know a simple stoole calprotectin test would have got us a long way - showing inflammation). They said his symptoms were "non specific" despite me saying exactly what my concerns were - which my concerns turned out to be the case. Asked to come back in 3 months (for another chat no doubt). I was told "he can't just go referring everybody". GP said they "see people with gastro problems every day". That left me wondering- surely there is a well trodden protocol to help them then?

No further help or tests from my GP despite phoning them and crying while asking how low my son's weight has to get before he is at risk of cardiac arrest/death.

2 visits to A&E later and he was referred for appropriate tests by gastroenterologist at the hospital with heads up that he expected a diagnosis of Chron's or Ulcerative colitis.

My son now has a diagnosis of Chron's and his symptoms are well managed with treatment.

We are asked to use GPs etc and stay away from A&E as a GPs visit is a fraction of the cost but it's impossible if they can't/won't refer for the tests that are needed.

These medical staff are on big wages (GP/paediatrician) but can't order simple tests so you go round the merry go round of seeing them time and again wasting far more money than the simple tests needed for diagnosis would cost.

I hope you get the help you need quickly OP and your symptoms reverse.

I think we should move from a model of GPs to treatment centres where the primary focus for an unwell person is "What tests/help do you need - right now". It felt to me like the GP/Paediatrician was on a performance target for getting people to clear off without any help or a referral. The less they do the better they seem to feel they have performed because the person has gone away without costing the NHS any money. Except they will be back time and time again and then present at A&E.

I apologise for the rant. I think I have PTSD from seeing my son so ill.

It's a shame it's not possible for the OP to cover the £6 then rather than have to pay £100 privately.

This is the problem with the NHS now. It's a free service but that often means no service.

It’s utter laziness that a speciality team
want bloods and fob it off
onto primary care. They want them and should therefore do them. Who is then checking for the results? Who actions them? Who determines if there’s an issue? Who lets the speciality team know? What if you’re on medication only initiated by a specialist that needs altering due to the results. There’s a lot
more than GP’s being difficult (don’t get me wrong I know there are some out there).

@ReenaGee

What level was your b12?

I assume (perhaps wrongly) that the OP would have gone to her GP initially triggering the referral to neurology.

If so wouldn't her symptoms warrant bloods to be ordered at that initial contact?

That would seem a basic sensible first step for the unexplained issues to me.

Whatever the politics of the situation, it is not OP'S fault and should not have been made her problem. Why does the patient have to suffer?!

Folate: 2.9 nmol/L

Total B12: 110 pmol/L

Active B12: 20 pmol/L

Yes this is what the neurologist said when I had my first appointment. Well, he asked if I had had blood tests. I wonder if he thinks the GP should have done them and stubbornly assumed they would after my appointment. As I said, I don't care who does them, as long as I don't have to pay for them. Sadly I did.

Neither did your GP. That's the problem.

I doubt it would have cost the GP £100

Why should the GP have to pay from their own pockets for a test that secondary care should be responsible for?? Quick way to put every GP practice in the UK out of business…

And that is the patient's fault how? Patients should not suffer because of the politics of business.

My neurologist is an arsehole. He would never initiate medication, but write to my G.P, stating that it can come out of their budget, disgusting. I’ve since found out he isn’t following protocol, if he needs to prescribe anything in the future I’ll mention to him that it’s his job to do it, he’s a cheeky bastard, anyone would think it’s his personal budget 😳