Mum with bronchiectasis

Hello everyone, thank you so much for your kind messages- I'm overwhelmed at the response! I've really felt cast adrift from services as no one seemed to have any answers/info or advice and we haven't met anyone with the condition either.

Mum has the condition where she is making too much mucous. She has a suction machine at home, but has a pretty ineffective cough following her cancer surgery ten years ago. She had colomycin antibiotic via neb twice daily, takes mucodyne and we give her back tapping twice daily to help bring the mucous up ( something that we've basically taught ourselves-thank goodness for YouTube!- as the only physio we have ever seen was for a brief moment on a hospital admission).

I just feel I'm constantly trying to fight for services, I keep asking for a care plan to be put in place but nothing ever happens. I've fought to get her iv antibiotics at home- which she has had successfully- but it took days of messing about with GP visits, trying ineffective Antonio and as you all appreciate, time is of the essence in such cases. Mums condition actually significantly deteriorated after contracting pseudomonas in hospital. They took her off all meds and basically said see how it goes because they antibiotics weren't working. That was in Jan 2015. By some miracle she self healed and after ten weeks in hospital ( with MRSA, cdiff and a super bug😡) she managed to come home (at 6.5 stone😔). The admission itself almost killed her, but at no point did I know that she could have had antibiotics at home. It was never suggested.

They STILL try to push for admission now (had a recent bug after ten months clear) but I have to fight to keep her at home. She had iV meds for three days and was much better thank god.

I just feel it's a constant battle. She's under weather today so trying to get district nurse out to do bloods but to no avail. Sometimes mum can't quite work out if she's coming down with something or just having an off day, a quick blood test can check infection levels and put her mind at rest or get her on antibiotics straight away.

We've got no bronchiectasis expert to refer to, she was due to see chest consultant but someone misplaced her referral and she's only now had an appt when it was due in Jan! We knew nothing about it! I just feel like I'm banging my head against a brick wall all of the time😡 We live in Wales, do you think that would make a difference to her care pathway?

Thank you all for listening 🙏🏼

10 Replies

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  • My thoughts and prayers to you.

  • I hope you find what you seek. :)

  • Hi again

    You might want to ask your surgery about your Mum having a matron, certainly following her visit to the resp consultant. You would then have someone to liaise with and they would do your Mum's obs when they call and they can prescribe.

    I woud also find out the name of the consultant your Mum is to see and telephone s/he's secretary to expedite your Mum's appointment. You could ask your GP to do this also, especially as it appears they cocked up the original regerral.

    Good luck.

    cx

  • Thank you for your info, I don't know if a matron is something that I can access in Wales? I work for the NHS and haven't come across someone in that job role in my surgery😐 I will enquire though👍🏼

  • If there is no Matron there might be a respiratory nurse you can see, especially if your Mum has unplanned hospital admissions, as they are keen to cut admissions down they often have someone in this role.

    You could ask one of the nurses when you see the consultant if there is any way you can liaise with respiratory nurseing staff for advice when your Mum is struggling. Try anything.

    love cx

  • Thank you 🙏🏼 she has an appointment coming up with consultant soon, I'll make sure to ask.

    Thanks again for taking the time to respond x

  • Wales is supposed to have a good scheme for caring for people with respiratory diseases, so you should be having better care, but I have to say that although my husband has had good care at Welsh hospitals the Welsh NHS does not seem very helpful for patients who want to take more personal responsibility. We live on the border and we have definitely noticed a difference between administrative attitudes in Wales and England, even though the care is just as good medically speaking. I hope you get the support you need. Good luck.

  • Thanks for the comment👍🏼 I know what you mean though, it's like patients have to fit into a certain box and if they present with anything different or want to be more proactive, it seems to cause them a headache. In terms of a care scheme, apart from one appointment with resp consultant, there has been no other care involvement. I couldn't even get a chronic conditions nurse involved. I think I need to start shouting a bit more loudly 😕

  • Oh my gosh, what a headache😱 it's just bureaucratic rubbish half the time. It should always be the patient at the top of the agenda- so much for person centred care! I work for health and even I can't get people to listen to me! From my experience with patients in my service, those who shout loudest most definitely get heard x

  • Join the club! I have been waiting for six months to get an ambulatory oxygen assessment and when you throw the border into the mix it gets worse! My consultant is in England, respiratory nurse in Wales, as is GP. What gets me is that living in England I can go to an English hospital, referred by my Welsh GP, but he cannot send me for acute care for my conditions but is supposed to send me to a Welsh hospital and yet if he calls an ambulance to the surgery he can get one from either side of the border, and if It's English you go to an English hospital and if it's Welsh you go to a Welsh hospital. Confusion all round. Keep shouting, it might work! I wish you all the best and hope your poor mother feels better soon xx

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