1. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    My mum was rushed in to hospital (1) with chest infection 12th March. Transferred to local hospital (2) 22nd March for rehab prior to coming home.
    29th March, fell in toilet, no nurse present despite mum being wobbly and confused. 2inch gash to head, sterri stripped in casualty, returned to ward.
    Mum tearful next day and more confused, not drinking when prompted during visit.
    31st March, another fall, hospital rang to say she was found on floor by bed, again no nurse present.
    1st April, Mum even more ga-ga. Asked if she was eating/drinking OK, nurse said she was.
    2nd April, hospital rang at 8pm, mum had fallen again, third time in five days, query hip. Ambulance took us to main hospital (3) in next county for Xray, casualty till 1am Sat 3rd, drip set up as mum so dehydrated, she is still on it. - how come they didn't notice this as hos. 2? even when I asked about her eating/drinking?? Operation to fix hip today Sunday 4th April. She now has a drip, wound dressing, catheter, (this was set up last night as she went into retention), wound drain, and oxygen mask, all of which she is now trying to remove. She is upset, confused, frightened and now miles from home. I am really fed up. Why is this happening? She.XX
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Sheila
    I'm so sorry to hear about this. You didn't say at what stage your Mum is regarding dementia. Has she been diagnosed?

    My wife also had problems on assessment in hospital, where she had a fall, and never really walked afterwards. They put her on 1-1 care plan to ensure she was safe and it sounds as if that is what your Mum needs. On this care plan, someone is dedicated to be with the patient at all times. Not all places can do it, but it is the only way to ensure safety. Jan is still on 1-1 care three years later. It took some fighting to get it as it is an expensive option for the state to fund.

    I am no expert, but believe your Mum needs specialised care, at least in the short term, if only to keep her from coming to harm.

    The only consolation may be that the situation usually has to get worse before it can get a bit better and more settled for the longer term. Sounds like you have already bottomed out and I do hope things will improve now.
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    what can I do

    Hi Brucie, Mum was diagnosed three years ago, Alz/Vas dementia.
    She has lived with us for the last two years since she became unsafe to live alone. All 3 hospitals are aware of this diagnoses and her care needs. She has severe dementia now, but was attending day care, fully mobile and mostly continent before her chest infection.
    I hope you are right about being at the bottom, cos I feel it is so wrong that she has had this happen as well as everything else. (She also has Empysema and Chronic Bronchitis)
    Hos 3 rang at lunch time as she would not eat, clenched teeth etc. Asked what I do, I suggested distract, talk, shove it in! It works as a rule. Said I would do the dinner tonight for them. Got there around 5, got her to drink 500mls squash through a straw and eat a banana (her fav fruit). She was not in pain so that was good and the drip had gone. Dinner arrived at 6.30pm, fed her 2/3rds first course, then an ice cream, gave her medications for them and then 2/3rds cup of tea so they can see she can do it now. I am sure you are right about 1 to 1, but how do you ensure they get it etc.? She is beginning to rehydrate again, but how could they let this happen, they are supposed to keep charts, I saw these in hos 1 and now in hos 3, but they were not there ever in hos 2 for you to see so you couldn't check anything, just ask and hope it was as they said. She XX
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hmm, same as my Jan then, Alz/Vas.

    The problem with many of the hospitals is they cope when things are life or death, but never seem to get their brains in gear to realise that they can stop things getting to that level in the first place.

    I found that only by making it clear that I was watching and noting every move - recording everything - and by visiting daily... only by such close surveillance did they ramp up their levels of care.

    In general the hospitals simply don't have the knowledge and experience to handle dementia patients. They tend to see them only fleetingly but, unfortunately, at times that are crucial.

    Remember the golden rule: take things a minute, an hour, a day - no more - at a time. And share.
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    thanks Brucie, I am being vigilant now, trouble is, it won't stop mum having a broken hip. I had tried to do my best, visiting every day since she's been in hospital and at hos 1 this was fine. I kept asking staff at hos 2 if she was OK etc, always same "oh yes she's fine" reply. It was not until the falls that I realised she really was not getting adequate attention to her safety and to what she was actually eating/drinking. I suspect she had not really had much help in hos 2 with eating and drinking except when I was there and pushing her to and helping her. (They assured me this was done by them as well when I asked I should add.) So why did hos 3 find she was so dehydrated, she wasn't in hos 1 or when she was moved to hos 2 ? Although they were not unkind to her, I think she was regarded as a bit of a nusance as she was confused etc. and she was not watched adequately to really know if she was ok or not. Hos 3, although far away is now trying to pick up the pieces and they are kind to her as far as I can see when I am there. I am going every day and trying to be there for either lunch or dinner now to help her. What more can I do. She was fine at home and everyone says I looked after her really well, it is so upsetting when your hands are tied by what they need medically but which then causes so many other troubles.
     
  6. Andrew

    Andrew Registered User

    Jul 9, 2003
    12
    London
    Hospital care

    Dear Sheila and Brucie

    Unfortunately part of the answer to Sheila's question 'Why is this happening?' seems to be 'Because it does all the time.'

    I spoke to a lady last week who was telling me about her mother with dementia who had been in a hospital.

    Her mother became very malnourised and dehydrated during her stay in hospital and another patient later explained that food would be taken away without her mother having touched it. The lady's dementia meant that she didn't underdstand that she was meant to eat the food. She needed prompting to do it. The same was true of drinking.

    Some hospital care for people with dementia is excellent and sensitive. But it does seem to be so variable.

    Staff in hospitals are not trained in how to care for someone with dementia. I would suggest two things you can do if you wanted to take it further:

    1. You could put in an official complaint listing the incidents you have described. The way to do this is to write to the hospital Chief Executive and mark the letter 'official complaint'. If you don't want to take it as far as that you can ask to speak to the PALS (patient advice and liasion service) adviser at the hospital who will record complaints and seek some resolution for you.

    2. You could also write to your MP and ask him/her to approach the hospital about the issues.

    Caring is not easy and it is wrong that you should have to be chasing around making sure that the hospital is doing their job properly.

    Hope this helps a bit.

    Best wishes
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    just an aside...

    I recently wrote the letter to the Chief Exec of the local PCT and she did even acknowledge receipt.

    I know it reached her because I hand-delivered it.

    The scarey thing is that these people are in any way responsible for the care of our loved ones!
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Andrew and Brucie, Mum's social worker has given me the name of the PALS worker for hos 2, as soon as this post op bit is over at hos 3 (this is always a dodgy time as infection can occur etc) I intend to contact her.
    I have asked around, both gen public and professional and hos 2 is not good at care of dementia as you say Andrew. I think the best I can do is to try my best to make sure she never goes back there.If someone had come, she would be at home now, oh god I could go on and on but I would bore you to tears with the details!!But of course my mum is mine, what about other 's mums and dads etc. This is partly why I feel I must speak to PALS. Of course I am really so fraught at present that I could do without it but for every Alz/Vas/dementia sufferer and their family out there I feel I should say something don't you?
    The scary bit is if she does have to (or we!) go to our local hos 2 in the future, will complaining mean treatment/care is denied/given grudgingly. Oh the things that are going round in my head right now, could I make it worse for her if she does have to come back there, (it is just down the road from us you see so highly likely.) She will be hard to care for again, will I make it so they dislike her before she even arrived, will care be more or less, I mean here the care we don't see not what we do!
    I am really wound up, I want to just take her home like NOW! But I know I can't because in hos 3 they are getting her over this awful scenario and they are caring for her, I am just terrified of what happens when she is well enough to get into a chair and starts to stand, walk etc, what if there is still no-one there, she could fall again and endure yet more pain which should NEVER have been in the first place. (A fellow patient has told us she rang twice for help to stop mum before she fell, they didn't come and she did fall, this lady is really upset but would she be too frightened to speak out if it came to it?) We are going up to the hos 3 later this afternoon to feed her treats and then do the dinner feed. Tomorrow it may have to be the lunch feed as it is such a long way, my husband and I both have disabilities as does our son who also lives with us and it was gone 9 last night before we had a meal. We are exhausted.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    First of all you need to think of yourself and your own family. These are desperate times but you will do no good for for Mum or your husband and son if you are not well yourself.

    Yes, I worry too about the patients out there who have no-one to fight for them, so I think we all want to make sure that our experiences are used for the benefit of all.

    Your Mum has had a diagnosis, so she must have a consultant assigned? Am I correct? If so, it would be sensible to talk these things through with them.

    If there is no consultant, then try your Mum's GP.

    You need help in this.

    As a last resort I always intended to contact the Press if nothing else worked. Fortunately I never needed to use that route. However, we know how the Press loves a story of the NHS falling down on patient care. It isn't fair of course, because the majority of the NHS is fantastic - but in the last resort, you use what you can to make sure your Mum is safe.

    Good luck.
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Brucie, I am seeing our GP tomorrow. Mum sleepy today but ate when I prompted, still unable to feed herself, yet just over 3 weeks ago, before all this she ate as well as I did. I take on board what you say, just wish someone who was professional and not emotional could step in and take this extra pressure right now!!
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hospital Care

    Sheila
    I often feel that we do not complain enough,we should praise when due and complain when it is justified.
    Having worked in the NHS for many years and dealt with many complaints the route given by Andrew is the one to take.
    Although the complaints procedure has altered the procedure is still to write to the Chief Executive and send the letter recorded delivery, advise him/her that you expect an early reply and if this does not happen your next move will be to write to the Chairman of the Health Authority concerned and also to your MP.
    Complaints are not taken lightly as a final recourse there is the NHS ombudsman
    Best Wishes Norm
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Norman, yes, you are probably right, in fact I am sure you are, it's just such a big EXTRA burden right now. I shall speak to our GP and I will do as you say and get in touch with mum's Alzheimer's consultant, unforetunately he is based at hos 2! I am also going to speak to PALS as soon as I get a chance as you know. Then, well lets hope something will be done for the good of all!!
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Update. I have now had a meeting with one of the head nurses at hos 2 and the PALS representative. They both agreed that there were issues and concerns that needed to be addressed to improve care for people in mum's situation. I have been promised that when she returns to hos 2 for rehab and physio to hopefully get her to walk again, all care will be taken and she will be monitered more closely. They were genuinly concerned to try and get better care in place for this type of patient. A new at risk/falls care plan is in the pipeline and staff are to be alerted to the not so evident/obvious care needs of dementia sufferers.
    It was all very amicable, I did not want a row, I just want them cared for, hopefully things will now be better.
    As for mum, she is still weak, needing to be fed and not continent anymore. But she is singing again, Lily Marlene is a favourite at the moment!
     
  14. Andrew

    Andrew Registered User

    Jul 9, 2003
    12
    London
    Hi Sheila

    Pleased to hear that you have had a positive response to your concerns from the PALS people. It sounds like you have handled it very sensitively. Hopefully your mother's care will be better now.

    It is also brilliant more generally that the nurses have had the specific needs of people with dementia highlighted to them.

    Best wishes
     
  15. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    2nd Update

    Hi all, just wanted to let you know how things are going.
    Since arriving back at hos. 2 this time, mum has been on bed rest continually which of course has left her even more frail and weak. I got her Social Worker to query the reason for this and the answer was, they felt it was safer. She also found out that mum was to have an Xray and see the specialist at the fracture clinic on 20th May.
    Today is her appointment day, to see the specialist who dealt with her broken hip at 10.20. So, I arrived on the ward at 10.00am. She was still in her bed as they were working down the ward, I queried whether they had remembered her appointment, almost at the same time a porter arrived to take her down, of course it didn't happen. I was asked if I could go in her place and that they would get her Xray done if need be before the end of clinic. Well, I waited in clinic for over two hours, finally saw one of the specialists team which was lucky as he was the one who had dealt with her when she fell so he knew the case.
    He said he could do nothing without the Xray and re-scheduled for next week, (I will take sarnies and a flask this time I think!)
    I asked about the continued bed rest and he said he saw no reason why she should not be sitting in a chair, that she would not be on bed rest for the rest of her life, and that gentle physio without weight bearing could and should have been applied!
    Don't get me wrong, the team on this ward have been kindness itself to mum, but they are obviosly being ultra cautious, to the extreme it seems.
    We had a further appointment at mum's bedside in the afternoon with the Nursing Care Assessor, to see what was to happen on discharge. I explained that I really had no idea as yet and would have to wait and see. (Mum's Social Worker is adamant she will try to get the nursing care paid for at home if I feel I want to give it a go, she quoted the lady who has just won care as we know for her husband who has dementia.) I said we wouldn't mind being a test case to help others so watch this space!!!
     
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    update

    Just to let you know that nursing staff (some) and mum's SW have decided that her case has not been handled as it should have been and that there is to be a case conference as to why she was considered to be bed rest only etc. (I have now seen the surgeon and he has confirmed this should not have happened nor that she should not have at least received passive physio.) I quieried these things after I finally got to see him with an up to date Xray showing mum's hip had mended, and that her heel had become necrotic following bedrest since 21st April. There is much to be asked and I am pretty up tight but for the sake of my mum, (It was her 79th birthday today) and others I shall do my best. She has now been getting out of bed for a time each day since the specialist said she could on Thursday. Already she is more alert, feisty and HUMAN.!!
     
  17. Chris

    Chris Registered User

    May 20, 2003
    243
    Hip Protectors

     
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Chris, thank you so much for your reply, I was beginning to feel a bit out in the wilderness with this one.
    I will go to physio on Tuesday and ask about hip protectors, I am not confident to leave it to the hospital as nothing gets done. I took her notes to physio myself after seeing the specialist to make sure of their arrival. I also took mum down to chiropody and got her nails cut and her heel looked at myself, it would have taken weeks if the ward had put the request in. They promptly rang the ward who are at last now dressing it. Needless to say it is causing mum extra pain as it is sore and ,weeping, it had been left open and weeping for a week or more before I could get the specialist to have a look! (I was at the hospital from 9.45am till 7.10 pm that day.)
    I go for at least two hours every day to feed her etc. and often more. You are not rambling at all, it is all very relevant and extremely upsetting to think this is happening so often in so many hospitals. My mum has had three tummy bugs to date whilst in hospital. She had none in the 2years and 9months she has lived with us. There is a man in the side ward opposite with one now so I expect it will go round again shortly! (He too has dementia and has broken his arm whilst in hospital.)
    I don't blame the nurses caring for mum, they are kindness itself, but somewhere along the line, the system is breaking down, notes are not being read and vulnerable elderly people are being put at risk, it has to stop. Now I'm rambling, sorry!
    I will post again after the meeting which is now scheduled for Weds. so please send me strength and patience for then!
    Love She. xxx
     
  19. Chris

    Chris Registered User

    May 20, 2003
    243
    Stay strong !

    Hello Sheila Just to say you are doing brilliantly - I remember feeling as if I was cracking up as felt invisible and as if no one else could see what I was seeing !!!!

    My Mum has been much the same for some time now, almost completely inactive ..... that brings its own challenges for me .... but it is such a different time to when Mum was up and wandering & falling down all the time - and needing the 'statutory services' - now that is over and I have the time & energy I'm acting as Carers Representative whenever get opportunity -so if in the midst of your experiences with your Mums health care you can see what changes would make a difference - please post.

    One idea I had was to have a note next to persons name (above bed) that indicated they needed extra support - here it starts to get difficult - I'm the last person to want to label people - but how else can you do it?? Somehow in the hectic hospital environment the patients who have dementia as well need to be known to all the staff. In the hospitals mental health unit - care is excellent as all staff know all patients need to be continually assessed and treated accordingly - I think its time general hospital staff saw the 'whole person' and not just the physical, medical needs and given time to address all their needs or maybe non medical staff to make sure everyday needs catered for.

    Sorry - at it again - rambling !!!!
     
  20. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Chris, yes a sign would be great. I think a sign similar to the one of frail elderly people but with an able bodied person with their arm around/helping an elderly one would/could/should get the message across and it would not be offensive.
    Mum has been moved to a sideroom today, prior to the meeting tomorrow as apparently she was keeping others awake. She had been in the main ward since 21st April.
    She has another skin tear today so now has one on each leg, both bandaged and steri stripped underneath I was told. Her heel which is badly necrotic now is being dressed with Granuflex and bandaged. It is giving her pain and her pain killers have been changed.
    I am going to write myself some notes for tomorrow although I am hoping mum's social worker and the discharge nurse who called the meeting will speak on mum's behalf as I feel so emotional about it all.
    I know the PALS rep has been asked to come and the manager of our local Crossroads rang me today and was ringing mum's social worker to see if she could come too. So mum has several people who know her and care about her in her court if you like.
    But don't hold your breath as to whether things will improve yet, I have been let down before and until things happen now I have learn't not to get my hopes up! I will post as soon as I can.
    Love SheXX
     

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