Fallen into NHS black hole...

[butterfliesandzebras]

I'm 14 weeks pregnant. I have been under midwife care at hospital A. I recently had a serious complication, and was blue-lighted to specialist hospital B. After a week on the ward I was discharged with 2 weeks of the medication that is keeping me and my unborn child alive. I was told hospital B would instruct my GP to keep prescribing this medication for the rest of the pregnancy.

It took more than a week before hospital B's letter arrived at the GP, only for the GP to tell me that this drug is restricted, cannot be prescribed by a GP, and in pregnancy should be prescribed by my hospital (A). He told me to contact hospital A urgently.

Hospital A says they know nothing about my condition, I don't have a consultant and can't do anything until I am referred to them (by the GP) and are given my notes from the hospital stay. I call GP again, says he can refer, but he doesn't have the notes on my condition (hospital B has them). I call hospital B, they say they believe I was referred to hospital A a week ago, but they will check and call back. They don't call back. Call again, and it's the same story. I start stressing about the few days of medication and they tell me to go back to the GP...!

I'm sick, I'm pregnant and I'm having a really hard time, on top of that playing phone tag between two hospitals and the gp for medicine to save my life is just too much to deal with.

AIBU to think it shouldn't be a sick patients job to chase doctors to get hold of medicine? Why on earth are critical medical notes being sent slowly by post from one place to another in this day and age?

This isn't NHS bashing, they saved my life, and without them I couldn't afford this medication. But surely we need to spend more money to update these systems, or people will fall through gaps.

Just a thought. What's on the packaging your medication came in? Should give name of pharmacy on it. That will tell you which hospital is responsible. Once you know you can point out that they are responsible for your care, because they dispensed the medicine.

I think your GP is wrong about the medication and might have misunderstood what you are asking.

He probably can't give an initial prescription for that drug (your first one) but when you have already had a prescription from the hospital he should be able to do repeats once the hospital has done the initial one. Can you return and see a different doctor at your GPs? Make sure they know that you have already had a prescription from the hospital.

If they're still saying they can't do it in a situation that serious the GP should be calling the consultant at hospital B instead (same day) to sort this for you.

As a last resort turn up at the consultants clinic at hospital B yourself and refuse to leave without seeing them or getting your scrip.

I seem to remember several years ago the NHS was trying to have all medical records moved online. There was such a public outcry the project was canceled. It would have avoided this problem.

Sorry I haven't anything constructive to say. good luck.

prawn - I know hospital B dispensed the medication, but they think they've discharged me back to the care of hospital A and GP.

Bill - the GP said it was in category 'red', on looking it up online, that means it has to be prescribed by a consultant, not a GP due to the high cost of the medication.

Maths - I understand people's privacy concerns, right now I'd happily have my medical data on a public billboard if it meant I wasn't stressing anymore (yes, that is me being unreasonable!).

Phone hospital B tomorrow - state clearly you have no medication, hospital A have not yet organised a consultant and so they are unwilling to prescribe medication yet. Ask for a direct consultant - to -consultant referral and a top of medication to cover the time it will take to be referred.

Ask GP for immediate referral if possible, explain you are getting nowhere and that it is making you unwell. E-mail your surgery once you have made request so you have a paper trail.

Speak to PALS if no success.

Yes, I do not think you should be running around sorting this out when you are not very well.

Op a similar thing happened to me , unfortunately I had to option but to go to the maternity hospitals out of hours emergency room.
You might be best doing the same, this is different to A and E in a general hospital.

How frustrating for you. I hope you manage to get it sorted.

As an aside, I'm not surprised your letter took a week. Quite good actually. The trust I work for has cut admin down to the bare bones, we are struggling!

Wow, how worrying for you. Do you have a named midwife at hospital A, or at GP surgery? You need someone who can act for you and bash heads together to get your prescription tomorrow.

Ok. This is shit, but you are going to have to take charge yourself.

A) Who have you spoke to at hospital b? Consultant? Junior? Admin? Speak to the consultant if you can.

B) If a referral has gone to hospital a, who did they send it to? - a specific consultant, or the dept? If it's a named consultant, that's someone else to pester.

C) back to your GP. They really can't just shrug their shoulders, even if it is a red listed drug. They can speak to either dept to work out a plan

I'm a (non obstetric) consultant. I prescribe drugs that variably (dependent on where the patient might live) is red listed.

You shouldn't have to be doing this, but get a name of someone who has been or is responsible for your care and go from there.

This is shot for you OP. But I f it's restricted, the GP cannot prescribe.

The contract for moving records around has been privatised and is in absolute chaos at the moment.

I would call the consultants secretary at hospital B and ask her to fax a copy of your records to your GP immediately. Then the GP can then do an urgent referral.

I suggest making this happen yourself as with the best will in the world, your GP spends most of the day consulting or in home visits and won't have the time to chase the secretary during office hours. Typically secretaries end up returning calls while GP's are consulting and it slows everything up.

Good luck

I would continue to chase hospital B.
Ultimately if the GP signs the script they're responsible for the medication even if the consultant suggested it so they can say the consultant has to continue the script if they aren't happy.
Medical records transfer in my area has been privatised and taken over by capita with massive delays and several incidents of harm to patients because of this. It is rubbish. Unfortunately it's not as simple as putting them in the post. Consultant's secretaries usually have secured email addresses, might be worth asking them what they are on both sides then ask hospital b to email hospital a to speed things up.

Agree with everything dipsy has said

If it is "red" then the GP cannot prescribe it.

Drugs are graded on a traffic light system where red is consultant must prescribe and monitor, amber must be initiated and stabilised by consultant but can then be taken over by GP and green is ok for all clinicians.

Does your surgery have a Practice Pharmacist as they are often very good at sorting issues like this

What is the name of the medication?

Poor you hope you get it sorted!

If you will genuinely die without this medication how are they allowing you to be at home? Is this not the kind of thing they should be keeping you in hospital for?!

Can you contact PALS? I'm not normally one to start making complaints but this is too time sensitive to have people fobbing you off.

I would also agree about contacting the secretary, they've helped me before.

Can your midwife refer you to a consultant? They will probably understand the seriousness of the situation and try to sort it out.

I would go to your GP surgery and play VERY nicely with the receptionists, tell them the problem in brief, and ask for the practice manager. GPs are primary care and are meant to provide this sort of 'linking' work. She can then call both hospitals and try to get them talking to each other. As someone said upthread there are secure NHS email addresses so you can circumvent the whole snail mail problem - if hospitals A and B are within the same trust, they can send your info securely over their trust email address, or most people have an @nhs.net address too, so emails between them are also confidential. What the practice manager needs to make happen is for an emailed referral letter to go from consultant B to consultant A, saying please prescribe NOW, and that you will be picking it up the next day. If for whatever reason they can't do that, then consultant B could fax consultant A to the same effect.

As a last resort I suppose you go to A&E as it is an emergency and get them to sort it out.

PALS urgently if your happy to tell us the area am sure we can locate the info for you. I work for the nhs and we jump to PALS failing that trust website will have directors and trust executive details escalate escalate escalate this is awful

YANBU OP. This should not be your job to sort out.

I recently had a similar situation where hospital requested GP prescribe and GP wasn't willing to. I ended up chasing around between the two for days, very shortly after an op and hospital stay for complications when I was feeling unwell and vulnerable. I work in hospitals so I know the system and I still found it overwhelming and awful.

Your GP should not have just sent you home and told you to sort it out yourself. GP can call the hospital and speak to the obstetrician who prescribed for you initally. Then they can sort it out amongst themselves.

If I were you I would ring your GP first thing in the morning. Get an emergency app (this is an emergency as you are running out of meds). Explain what has happened and say you can't do any more, but you need their help to fix it urgently, ie today. Explain how stressed it is making you and the risks of not getting it sorted. Make it your GPs problem.

This is a little unfair because it sounds like it's the hospital's fault for not sorting prescribing out properly, but the system we have only allows us to access the GP directly, so they have to be our first point of contact.

I am keeping my fingers firmly crossed for you OP.

Thanks for everyones help!

Called GP first thing left a message, had a call back from receptionist within 30mins saying the GP had written the prescription on a 'one off' emergency basis (two more weeks medicine). Then had call back from hospital B saying they hadn't transferred me yet to hospital A as they had lost some critical price of paper work, they were all swamped, and it could take another week or so. (They did say I could turn up and wait for an emergency appointment to get medication, but I would likely be waiting all day as they are very busy, so I explained I had already got an emergency supply from gp for now).

Collected medication from pharmacy and found it was a slightly different amount (!) to what I had previously been given. Took it straight to gp reception and had a bit of a panic, at which point a kind nurse practitioner (who was supposed to be on her lunch break) took over, firstly phoning with the doctor to check the variance in amount wouldn't make any difference in the short term, and secondly to refer me to hospital A and get me a consultants appointment on Friday morning, who will hopefully be able to sort this whole mess out.

I could have kissed her!