To think the gps at my surgery shouldnt advise patients on things they know nothing about?

[Koothrapanties]

Dd has bad reflux and cows milk protein allergy.

It took months to get her a diagnosis and this was only once she was so ill she was admitted to hospital with blood in her poo and every other symptom on the list. She was in a very bad way. I had gone to the gp again and again, but had been dismissed as a hysterical first time mother.

She was put on domperidone, gaviscon and nutramigen (special milk) by her paediatrician and has been thriving ever since, still very sicky, but much better.

We had to go to the gp to get her medications on repeat prescription and were told by the gp to get her off of domperidone because it was an antipsychotic and very dangerous for her. We tried to wean her down on it but she started projectile vomiting again and was losing most of her feeds. Spoke to the paediatrician who was very cross that the gp had meddled and explained that what she had said was rubbish, and explained any side effects domperidone can cause.

I saw another gp for myself today and quickly asked him how to arrange dd's change to the next stage of nutramigen at 6 months. He told me to give her cows milk because nutramigen is not nutritious enough apparently?! I told him that the paediatrician had said not to even try to introduce it until after 12 months as she had such a bad reaction, and The gp didn't seem best pleased.

The last gp I saw for my pelvis problem also told me I have a problem with my ICG joint, which my physio has told me doesn't even exist! They were all laughing at the letter she had sent to them which made no sense apparently.

This isn't good enough surely? I understand GPs aren't experts in every area, but they shouldn't be giving out dangerous advice like they have for my dd! If they don't know, then surely they should leave it to the specialist dealing with the problem? Aibu?

Mutley xx
I have a beautiful 10 year old daughter now who has saved our lives! (and a beautiful dog too)

But giles where does the government's responsibility end? If people are on a decent salary why should they get formula paid for rather than budget effectively? I don't agree that people should get free formula just because it is needed through no fault of their own.

Yes Mutley, I would have to totally agree with you, I would feel much happier too with that system!

landrover - really pleased to hear it xx

Sorry I mean pleased to hear about your beautiful daughter not about you agreeing with me!!

But its not just free formula. It's very expensive formular that means the difference between life and death. Something that web well off couples couldn't afford. What do you think should happen to these babies?

But how is formula for a cmpa different from any medication for any other allergy? It's not a choice. I'm sure we would all rather our children didn't have allergies at all, it would be a hell of a lot easier. Where do you draw the line between that and all the other prescriptions my DS has for the same thing.

Ha ha Mutley, I got that

If dds formula was the same price or even close to the price of normal formula I would pay for it without hesitation. Unfortunately the special formula is completely unaffordable. If the tins are £35 a week and dd goes through a tin in 1.5 days we would be spending £160+ a week which is around £30 less than dhs total earnings on a bad week. How is that at all possible? (I think the maths is right there?)

Formula for children with allergies isn't just formula though it is medication and therefore it is right that they get it for free. Just the same as DS gets his antihistamines for his allergy free along with other medication he needs.

Ok mutley, I see the sense in what you are saying but:

eg no 1 - first baby, horrendous problems keeping food in, screaming arching, down on the 5th percentile. HV says: 'not right, see GP'. GP says: 'colic and over anxious 1st time parents'. Takes ages and ages (going via unhelpful Peads Cons too) and finally driving to Sick Kids one night ourselves to get a dx of pyloric stenosis. Twas borderline so in the end they didn't operate (and I trust that decision). How were we to 'go private' with this? we didn't know what it was for around 6m and my H was being threatened with job loss all that time due to time off to help care for sick child.

eg no 2 - suspect asd type issues in child. ask via local nhs. no help available. seek opinion of senior nhs consultant (100's of miles away, so therefore privately). She dx asd traits and says thorough testing needs doing locally by nhs. Locals refuse and threaten child protection should we insist. Private assessment of no use. Nhs one halted. what to do in that situation?

Pobble and Giles The milk for CMPA is still given on prescription as long as it has been recommended by a paediatrician but we have had mothers demand it after they have Googled symptoms and diagnosed it themselves. These milks are usually about £25-35 per tin to my knowledge. The lactose free and soya milks are not prescribed as they are broadly similar in price to normal formula.

As someone working in the NHS I can see where Mutley is coming from. I think free at the point of delivery makes some patients very demanding and unrealistic about their entitlements which then impacts on others as there is less left in the pot.

But what happens when you can't get referred to a paediatrician or someone that can permit the milk?

That's the problem, we have all experienced a gp who won't accept there's a problem.

Yup. That's the point, is that some GPs just send you off with the 'he'll grow out of it', 'he's putting on weight, he's fine' approach. Then what?

I'm well aware that a lot of babies do grow out of it, that all babies have some degree of reflux and it doesn't necessarily mean a cmpa. But for us who's children do have it, it can be such a fight to get taken seriously.

Luckily one of the GPs I saw recognised this when DS was about 3 months and suggested Nutramigen. But getting his reflux and eczema sorted was a nightmare and in the end we paid to see a dermatologist, then went back to the GP.

It just shouldn't be like this. And of course if you are lucky enough to get a referral it can take weeks. Meanwhile you're at home with a screaming baby. It's exhausting.

Unfortunately I guess there will always be gaps in a system and guidelines have to work from the starting point that GPs would follow NICE guidance and refer properly. I suppose I am lucky as the GPs I work with are very good and extremely caring as I said upthread and I am always shocked when I hear of the poor care some of you have had as it is outside both my personal and professional experience

I think it is difficult sometimes though for people who are well-informed and responsible to comprehend the unreasonable demands the NHS sometimes faces from others. This can be for all sorts of reasons including ignorance, lack of responsibility or greed but it does mean we cannot afford to continue to just hand stuff out. I just checked on one of the drug company websites which estimates the cost of Neocate as over £3000 per year and Nutramigen as £1850 per year, that's worth every single penny when it is needed but a lot to waste if inappropriate.

I think that all prescriptions should be treated the same,whether they relate to an allergy or infection or anything else. I'm referring to the formula as an example only.

And I think the system should be differentso that gps aren't gatekeepers and can focus on medicine.

In which case those of you with poorly babies would hopefully get a response quicker.

In the meantime if it was me and I knew something waswwrong with my baby and was repeatedly getting fobbed off by gp (which many of you say you are) I would pay for a private consultation with a paed - not particularly expensive as if there was a problem you could be referred back to nhs.

I think the trouble is that you need your GP to refer you even to go privately Mutley so, if they are really crap and obstinate with it, it could still be difficult.

From a healthcare professional point of view I really wish we could improve the system so the care and budget goes to where it is needed.

I'm confused, what do GPs have to do with private referrals? We just phoned the private hospital and booked an appointment. Being hcp we knew who to see through recommendation.

After we saw them, I went back to the GP with the letter and prescription. They then referred us on the NHS, or is that what you mean? That GPs can still refuse?

Many private consultants will not see you without a referral either from your GP, or from another consultant. Certainly if you are going through health insurance, you need a referral.

We have always had to have a referral from the GP to see a consultant privately. I thought it was just standard procedure but maybe it is because it is on health insurance

Nope we don't have health insurance, we paid.

Luckily, we have a couple of very good GPs at our local surgery and one is excellent.

The OP's story reminds me of a story a friend had about taking her baby over and over again to the GP and saying that the baby was projectile vomiting, while the GP responded that it was normal for babies to be sick blah blah. The last time she went, when baby was about nine months old, the GP was doing his "normal for babies to be sick" routine when the baby projectile vomited all over the GP and his computer.

After that, he took the problem seriously.

This system in the UK where you have to be referred to a specialist by a GP is incomprehensible.

Yes, I'd go to a GP if I don't know what is wrong with me.

For anything else, I go directly to a specialist. When DC need medical attention, I take them to their paediatrician.

Cote but you don't always know what specialist you need, hence why you need a GP to assess you.

We only need GPs now to write prescriptions. All the medical knowledge in the world is available to anyone who can use a mouse.