Feel so let down by NHS

[shezzle]

We went to see our doctor when Dd3 was tiny as she suffered terribly with reflux, our Dd2 did too. Medication didn't work very well so had to go back again, at 7 weeks old doc diagnosed a possible dairy intolerance as dd2 became very poorly showing all the symptoms for it, he referred us to a paediatrician and said it shouldnt take too long for the appointment to come through.i am bfing so as a temporary solution I researched it all and decided to try going dairy free. This worked and spoke to doc again explaining that although diet helped she was still not completely better, without going into detail too much she still has very upset tummy, not good for very small baby. He wanted to try her on some hypoallergenic milk which I do too, bfing a poorly child is really hard although it's supposed to best, when your baby seems intolerant of your own milk it's so upsetting. Anyway that was 30th May, heard nothing so contacted practice, the referral was urgent apparently. Nobody could tell me why we had no appointment as yet and promised to get back to me. They didn't so I called again last week, turns out the referral has been requested 4 times, problem with hospital so they have tried again. Finally got letter today so rang hospital to make the appointment- due to the fact that there was a mix up my poor dd3 now has a date for 18th Sept! She will be 5 months old by then! We have been muddling through hoping to be seen each week, they can't get us in sooner despite the fact we were seen back in May. I feel so let down and just want help before weaning. Bfing is getting me down as bub so ill. How can they have let us wait SO long?? Milk is a babies most important need, this seems so unreasonable to me, are there guidelines on how long a baby has to wait to be seen?

Bumping in the hope at someone might see and know. Just wanted to hand hold a bit for you too. Tough to not know whether you're going to get expert help quickly in your grand task of being the best mum you can be. Really hoping you do.

Hi Shezzle sorry to hear that things have not been good. Do you have the dreaded facebook? A friend of mine has a page on there called "Dairy Free Baby and Me" If you contact her and have a look around the page it might help. If you dont have facebook, let me know and I will give you another contact for her (via PM) She is lovely and I am sure she will be able to guide you a bit and help you out. She also has a blog that she probably has a link to which will be worth a read.

Ring up the number on the letter and tell them the situation . I. Did this with a paed appointment and it was moved to a different hospital (I drive do no problem ) much earlier . I told them I was happy to travel and would wait at the end of a clinic as I needed help NOW! They helped me .

happens.

When DS was having brain scans and blood tests to see if he had a brain disorder that would kill him the hospital kept losing the results!!

Keep on at them. But if they can't fit you in (other urgent cases waiting longer perhaps) can they give you any over the phone advice?

Sorry you're going through this

Is your baby developing as it should, gaining weight etc?

Me and DH had to go to see a pediatrician about DS. He had a problem with his heart when he was 3 months old and so we was referred, 2 months later I get a letter to book the appointment and another month after that we saw the paediatrician. It turned put to be fine after a ultra sound scan and we was told that he wouldn't need seeing in paediatrics anymore

It is perfectly normal to wait to get an appointment, Hope it turns out okay.

See your GP if you start worrying more about it as they can 'chase' the appointment up for you and get you seen a little earlier.

Oh gp is a fab plan! I went about the results after I got so stressed and she wrote them a strongly worded letter about causing undue stress and anxiety and hospital chased it up very quickly and sent a letter of apology

Feel your pain. Slightly different, but DS1 had an anaphylactic reaction a couple of weeks ago. Referred to hospital. When I rang and spoke to the consultant's secretary, she said it would be "months."

He had another reaction last night, although not as bad as we treated him fast.

I am now preparing my Royal Pain In The Arse campaign. Stand by for daily phone calls, hospital!

While I understand that you are desperate for help, this (if my poor addled brain serves me right) is within the given timeframe for initial consultation. I would be wanting to know why the referral done in May wasn't processed.

However...please try not to lose your rag with the secretary. Usually it's a case of they simply don't have an appointment to give you, it's not some arbitrary "let's make them wait" thing. Maybe explain the situation (referral not processed in May) and see if the consultant will see you as an extra sooner than Sept? Good luck - hope your DD improves soon.

Sorry you're going through this; my DS has just grown out of severe reflux at age 3.5. it's been hell on earth!

I would phone the gastro consultant's secretary & say that you would greatly appreciate a cancellation should one become available. Ask nicely though! There are usually cancellations at this time of year as people cancel for holidays.

Secondly, you could contact the dietitians at the same hospital & ask if they would accept a self-referral, explaining the situation with the delayed appt. If you have information about your baby's weight gains etc (red book in Scotland) that would help too. Having said that, professionals can often be dismissive of reflux unless the child is losing weight - despite having bad symptoms/pain.

Your GP may be able to prescribe a dairy-free formula eg Nutramigen - don't be tempted to use soya or goats milk as your baby may react to that too.

Your GP can also prescribe Gaviscon (but it only helps in mild cases)

Or you could ask your GP to phone the gastro consultant & get some interim advice until the appointment. (my GP used to do this & adjust doses through phone/email contact with consultant)

I hope some of the above suggestions help

Thanks for your responses, I hope your poorly dc's all recovered well or are getting treatment. My dd3 is better after the dairy free diet ( thanks positiveattitude will def take a look at your friends fb page!) the reflux is better and under control and having read some of your posts regarding your dc's having to wait I feel grateful that I can manage for now . crunchyfrog Hope your ds is seen very soon- I rang the hospital yesterday after reading advice here and guess what? Paed called me back herself, lovely lady, she did say it can take an age to get seen and they feel awful about it. She also said because our referral was buggered up ( my words not hers!) she will help now and is sending a prescription for the nutramigen so we can at least start getting dd3 used to it. The appointment is now brought forward to 18th August too! So yes it is worth ringing, as paed also said people cancel and sometimes they can squeeze you in not all the time though. Thanks again all

Our DD has just outgrown dairy, egg and soya intolerances at 2.5! We went through the hell of reflux and intolerances and wouldn't wish it on anybody - you have our sympathies.
If you don't want to give nutramigen (which is no magic bullet as some more sensitive babies will still react to it, don't know if you know) you can try an exclusion diet yourself. Often intolerances happen alongside other intolerances. For example a third of dairy intolerant children are also intolerant to soya, and most are also intolerant to all animal milks (goat, sheep etc). It's a matter of finding out what else is the problem and eliminating it from your diet. This is what I did with DD and it worked out really well for us. Also if you do manage to find out what your DC is intolerant to, it will be much easier when weaning onto solids, as you will know which foods to avoid giving.
I'm on my phone so can't link but if you google for the bmj article on the diagnosis and management of cows milk protein intolerance in infants, it tells you lots more about the current research and guidelines for treatment of breastfed babies. Good luck!

as you said dairy free has help have you also eliminated soya from your diet? children who are fair intolerant are often intolerant to soya as well. look out for hidden stuff in processed food to.

Great :-).... I have always found the secretary's very helpful and kind.

I finally have DS3, 18mo's appointment to see the Dietician about his severe Dairy allergy. The GP here had the same issue, kept telling me he had been referred to both the Dietician and the Allergy Consultant, when they hadn't bothered.

I had been on a dairy free diet myself as I was BF from when DS3 was 8wo, on the advice of my BF counsellor, but when DS3 was 12.5mo, I had to stop BF suddenly as I had to start taking medicine incompatible with BF.

When he was 11mo I started trying to get referrals. That was 14th December last year. The GP's finally referred him on 30th May THIS year.

His dietician appointment is on the 15th August. We STILL don't have the Allergy Consultant appointment (going back to GP on Monday to moan YET AGAIN.

So we have waited 'officially' 11 WEEKS for the appointment, but unofficially 35 weeks for the damn appointment.

And DS3's reaction to even the tiniest amounts of Cow's Milk Protein is very severe - he goes into anaphylaxis at trace amounts. And he is also allergic to Soy and Nuts.

80% of people with a true CMP allergy rather than a lactose intolerance will also be allergic to Soy. In the meantime, it might be worth cutting Soy out of your diet/your baby's diet to see if there is any further improvement, but I would talk to your GP/ HV first.

Also, your GP CAN prescribe you hypoallergenic milk before full diagnosis. My GP is prescribing Nutramigen Lipil 2 for DS3.

Read up on the NICE guidelines about allergy.

I can tell you why you have been 'put off' on your referral - it's because the PCT get fined if people are on the waiting list for longer than 18 weeks. So they don't accept the referral until they know that you will have an 18 week wait at most. My own GP has admitted as much.

However, my DS3's allergy referral has been put off so much that I am losing patience with not even being on the WAITING LIST, that I am going to warn my GP that if they don't get me an appointment within the next 7 weeks, I am going to put in proper complaints to a) PALS, and b) The PCT and I will take it further, as both referrals were DEFINITELY sent through together on the 30th May. And I have actually been trying since 14th December last year.

at the stupid 'massaging' of waiting list figured that means we have to wait even LONGER for an appointment!!!

Tbh, I'm even considering going to the newspapers about the way that PCT's massage their waiting list figures, it's annoying me so much!

I also have a fb page worth looking at - Allergy Essex. They have a shop (online and proper shop) selling food too. It's stuff that they import, worth checking out. The shop itself is local to me, but there is also a support group and a recipes page.

And did you know that BLOCK stork margarine is totally dairy and soy free, and can be used in baking?

All cakes turn out perfectly using it!

Glad you got somewhere, OP and hoping things get better soon x

OP glad your DD is getting better.

We had terrible time with reflux and DD2. I remember on one occasion calling up to make another appointment with our rapid access paediatric clinic when DD2 was 6 months old and being told we had to wait 2 months for the next appointment, I just broke down and said "that is like telling a 60 year old man he has to wait 20 years for an appointment" the lady on the end of the phone asked me to hold on and when she came back said "would you like an appointment next week"

It is always worth phoning, good luck at your appointment.