District nurses turned up today for their daytime fortnightly visit (which up til a month ago) was twice weekly, walked into the hall and said we will now be coming once a month, ok fine I can live with that! If of course we need them in between we can call them. Then the next bit, hits me like a ton of s**t!! Re the night visits (every night) this may stop! What? Pardon, did I hear you right?!!!! Yes you did! Er excuse me, (I start crying) we NEED the nightly visits for pad changes!! DN says we've spoken to chc and they think the visits may not be needed! So now I go mental, my dad needs that visit as pad needs changing due to being doubly incontinent and the pad is ALWAYS wet or bowels opened!! I suggest they read the DN file on nightly visits! I explain mum n I can't change dad he is too heavy! She then went into chc may stop, social care may get involved! I explained in no uncertain terms my understanding of chc (thanks to my darling Kevin) and that dads needs are nursing related not social! She discussed convene n I said this is a no go! And dad doesn't want a catheter. The DN suggested I refrain from crying! Again what, your stressing me out to the max, after all this is MY dads care we're talking about! She wanted to look at the pad which we buy n are the very best night pads you can get! In the end she concluded it's just a review, well you know what, she can stick the review right up her backside!! I'm sick to death of people upsetting me unnecessarily in what is already a difficult and heartbreaking situation! Rant over! Await your cuddles x

40 Replies

  • {Hugs} coming your way! xx

    You are doing an amazing job, cry if you want and when you want, rant too - but most of all keep standing your ground with the powers that be .... tell them how it is. Sending you strength to fight if it comes to that xx

  • Awe thx u x

  • Omg watt that is awful - big hugs coming your way and I hope it all gets sorted asap xxxx

  • Amanda sending you a big hug, CHC is for people with terminal illness , lucky Kevin has given loads of advice, our DN is wonderful so can't comment on what they are saying, they should not distress you, we have enough going on without stressing out, I know how you feel social worker was lovely, but felt stressed out after her visit, hang In There Amanda you have enough without all this xxxxxx

  • Thx you Yvonne, love and hugs to you x

  • Thx u Sophie x

  • Here is a huge one !!!

    You tell them, girl. Cry and scream if it works.

    You're doing a great job.

    lots of love, Jean x

  • Bless you thx Jean x

  • Oh Amanda I know where you are coming from. They use to come in and give S regular enemas, it was part of his bowel management. Suddenly they just stopped, didn't even have the decency to tell me! After a letter of official complaint from my daughter, they are a lot more hands on. Still desperately trying to stop coming, but I know they won't. They are now even talking about coming in to give regular intervention.

    I would complain to the CHC manager, saying your Dad is being treated badly and they have assessed him as needing medical care and nobody is doing that! Even a letter to the NHS officials, I am sure when Kevin reads this, he will give the title of the person to complain to. No professional should treat you like they have.

    Just remember no matter what the illness, we all have "social needs"!!!!! Perhaps CHC need to get carers coming in to deal with this, instead of the DN's. I know you have said your Dad doesn't want a catether, but they do save a lot of the pad changing lark and the indignity that goes with it.

    As to the cuddles, of course you have my arm around you, with everyone else's . Chin up, open that bottle of wine and shut the world out for a few hours!

    Lots of love


  • Aww heady you are one of my lifelines, thx you!!

    If I can muster up the energy (next week) I'll put in an official written complaint! Right now though they've zapped me of energy, thx u v much not! That's the dns not you lol

    I do agree with the catheter and wish to god dad would comply but no, - and I'm buggered if I can force it....

    Now for the 🍷 X

  • Enjoy!

    Lots of love


  • Sending you a big remote cuddle - your day sounds awful!! . I've spent today crying / shouting at mums utterly blooming useless Gp....long story....but I'm right there with you x

  • Aww suze I get ya!! Sorry you've had a crap time with the GP!! Share your story, go on, make me feel better! 😉 On top of DN nonsense my car service was £300 and the inco sheets I want have a manufacturing problem n now dad is talking nonsense.....again!! X

  • Honestly GP is just USELESS!!! Referred my poor Mum - who's at best walking badly with a frame - to a 'sports injury' physio - who took one look at mum in a wheel chair & said she really couldn't help her & mum needed a domiciillary or neuro physio & to go back to gp (marvellous waste of a day off work!) so I phoned gp today who told me that Dom. Physios were rubbish & could do nothing to 'make her better'. Silly idiot doesn't realise she's not going to get better - this is about quality of life & maintenance (the sports physio saw that immediately!). So he said he'd refer her & went to hang which point I assured him there was more! Said Dad was a crisis point - mum needs more support etc (in tears at this point). His reply was.....what would you like me to do about it?!?! I suggested that maybe his 40 years medical experience may help him to make a suggestion as to where the heck we we haven't got a b*^*^y clue. Total utter ineptitude!!!! Grrrrrr.....thank heavens for a fabulous OT who seems to be right on it this week. So.....not alone in your crap day Satt....not that that makes it much better. Sending wine & hugs xxx

  • Aww suze your proper going through it and this is where I seem to forget my own troubles because I want to help others! Where abouts in the U.K. are uk? I want to try and help as much as I can, this lovely OT of yours needs to be starting the chc process x

  • She is doing & we looked at care home for respite for mum today. So we r progressing - but as you say it's all painful enough Without fights with eejits!! So much heartache! X

  • I'm gonna really hope to God then then you need the hello you need!!!!! ❤️

  • Help not hello!!!!!!

  • Hi Suze, think you must have my GP!!! He once told me, hospices were only for people with Cancer, if S needed nursing help, he ought to go into a nursing home, "but come and see me, we are here to help!" Might if he knew the first thing about the medical profession. That doesn't seem to be a requirement these days.

    Get your Mum into some sort of physio. I have a personal trainer come and see my husband twice a week. It's not stopping the progression of PSP, but I like to think it is keeping him strong, so he can still weight bear, even though he is in a wheelchair. Apart from anything else he enjoys it.

    Lots of love


  • Heady - Yup....same old school of Gp's!! Told me today that "he'd do anything he could to help - just to call." Oh the irony....I was on the ruddy phone to him silly man - crying & virtually begging for help!

    On a happier note - the staff at the care home were a true delight & restored my faith in human kindness. Such a stark contrast to the man who's being paid probably 5 times their wages!

    Night all & sweet dreams X

  • Unfortunately ours is only young! So that school keeps chucking them out, unprepared and uncaring! What I can't forgive our GP for, he is young, therefore should be excited that he has a rare condition to deal with, instead of little Johnnie's snotty nose and the old lady who has nothing better to do! But I suppose they don't take any effort to look after.

    Whatever these "sweet" people get paid, it's enough that they only need to work part time and still have a decent life.

    Lots of love


  • That is so cruel. Do these people get high on holding fear of loosing their care or do they get a bonus for cutting back on service? Hugs

  • Satt they cannot stop coming in they have a duty of care it's appalling how uncaring some people are, why are you buying your own pads nhs should provide request a incontinence review. Also they do not have the information or right to come and tell you that the Chc funding may be stopped. Some people should not be nurses!!! Causing this uneccessary stress on top of everything else you deal with. Hugs hugs hugs xxxxx

  • Thx Richmond

    Unbelievably the dns didn't turn up last night so mum called them at 2am to be told dads been discharged???? Wtf??!!

    Mum told them you NEED to come and they did at 3am

    I'm now in the process of raising the most massive complaint to dns and chc!!!! I'm sooooooo stressed! Just cancelled working tomorrow because I can't cope with this shit and work when everything is so up in the air!! X

  • Not acceptable. Tell them you will contact newspaper, M.P. etc.

    They can't treat people like that !

    Big hug, Jean xx

  • Dam right thanks Jean x

  • I'm so angry for you. The lack of communication is appalling. You can't just drop care with no warning or notice.

    Even bigger hugs coming your way. Xxxx

  • Exactly x

  • That is so wrong get complaining have you rung Chc to see if they have changed it or if nurses have made that decision, I would have thought Chc cannot change the plan without a re-assessment sounds to me like community nurses are trying to change it of there own backs. You can ring district nurse number and request incontinence assessment as urgent. So sorry to hear about so called health care professionals causing you so much uneccessary stress. Feel embarrassed to call my self a nurse when I hear these stories 😡😡 xxxxxxxx

  • Awe love you Richmond! This is obviously just something that's gone very wrong! I will get to the bottom of it n find out who it was and then wham!! Currently neither chc or DN will say whose decision it was, but I'm sure with my pursuasion they will! X

  • Unfortunately it doesn't surprise me anymore how people can be towards patients and families. Why be in a caring profession and show no compassion. We had a hospital appointment yesterday at day hospital for neuro and the HCA was appalling. Mum was in tears.

    I just want to bop all these people on the. Bloody nose as they seem to have no idea the stress under and then flippant comments just add to the turmoil. Makes me so mad but also zapped of energy to keep chasing and fighting.

    Big hugs and hope today is less stressful.

    Our DNs are atrocious!


  • Exactly spiral they don't seem to care at all

    See my reply to Richmond

    Big hugs ha darling x

  • I agree with Richmond1, you don't need to buy your own pads. Get an incontinence review done, sorry another GP referral. Be prepared it does take time. Be warned they are also going to frustrate the hell out of you as they want you to start with a basic pad (when what is needed is a super absorbant pad). It will save you a fortune, we used to buy our own pads as well.

    Definitely put a complaint in, your Dad's situation hasn't improved so how dare they say that they can't deliver the same level of care. Stand your ground. Be strong. All the best.

  • Thx u complaint in process n yes I'll speak about pads too

    Grrrrr x

  • We have to buy own pads for nighttime as the super absorbant ones we finally got are so huge on Mums tiny frame it leaks everywhere so I buy own pull ups now as saves a mound of washing.

  • I don't know if you know but you can get special pants to keep the really large pads in place, we use them. Tena make then and you can buy them from Asia.

  • Thx you no I didn't know! I'll google x

  • We get mesh pants to hold the pads in place from thxe incontinence nurse.

  • Poor, poor you, and your mum and dad too! Insensitivity is what you don't need at this stage. Sending a huge hug and lots of best wishes.X

  • Thx you robbo x

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