To not get what I'm meant to DO (healthcare)

[DorothyL]

Ds is11 and has chronic lung problems (bronchiectasis).

He is under consultant care. He is currently unwell with his chest. We had a routine consultant appointment several weeks ago when ds was already going downhill - consultant said to give antibiotics which we did. Didn't improve - tried to get hold of consultant which took days, eventually spoke to her - prescribed two weeks of different antibiotics. Course now finished, but ds not better, getting worse if anything. Phoned consultant secretary this morning - said she'd get a message to her to ring me. Nothing. Phoned again at 3 - consultant in clinic all afternoon.

What on earth am I meant to be doing in this situation?
GP surgery no good either cos they don't know enough about ds, also the receptionists there usually try to fob you off with a phone appointment in two weeks' time.

Who can I ask for help???

Many hospitals now have Consultant Nurse specialists - you could ask the consultant's secretary if you could have access to either a chest or a paediatric consultant nurse. They usually have prescribing powers so would be a good source of information and practical support.

If he can't breathe then go to A&E.
From what I read about that condition, what else you can do is just persistently seeking treatment until he gets better. It looks like something that can be very variable with long good & long bad phases, and no good treatments (sorry x).

Its worth remembering consultant's secretaries see one of their main roles as stopping people talking to them - I know of what I speak trust me, so don't not be bashful about being pushy!

Does your local hospital or NHS Trust have an urgent care walk-in? Some have paediatric specialists who might be more helpful than a GP at this stage and obviously they can admit to hospital straight away if needed. Otherwise A&E if his condition is deteriorsting. Sorry your DS is having a tough time.

If you need help, and you can't get him seen at your GP, take him to A&E and they will triage him up to the children's ward.

Do they give you specimen pots? If so drop one into your gps tomorrow. If he is getting worse and struggling with his breathing then a &e tonight. If not and it's case of more phlegm and coughing then start pestering consultant from 8am tomorrow.
He may be at the stage of needing ivs if he hasn't responded to antibiotics. But they'll need a sample .
Do they have a nurse specialist you could be put under? & a physio? Good luck, it's hard and frustrating doing battle with the system.

The thing is he's been well for years on prophylactic ab's, but now they're stopped he's getting worse, but we don't have a procedure in place.

From experience, if you ring 111 out of hours, and mention breathing problems, they will usually send someone our pretty quickly. If you speak to the duty doctor and mention the abs which did work (different to those he was taking most recently?), it is possible that they will prescribe a course of those, pending a visit to his consultant.

I had an instance of antibiotics not successfully treating a family member's UTI - hallucinating etc. I mentioned an ab to duty Dr. which, although it had more potential side-effects (hence GPs reluctance to prescribe), had previously cleared the infection. He was happy to try it again, and it did the trick.

I phoned the GP surgery and was a bit tearful and they got me in at 6 pm to see a GP, halleluyah! He's prescribed the other abs again, and advised to call 111 if nec tonight or otherwise call consultant again tmrw.

Feel calmer now - thanks all!!

Good luck and hope your DS feels better soon.

Left another message with the consultant's secretary, pointing out that the gp said I needed to speak to her. No response yet.
So frustrating!!