I have just been reading about this in relation to PWD when in hospital for unrelated conditions, just wondered if anyone else heard about it, and opinions??
I had not heard of it, Google has-
https://johnscampaign.org.uk/#/
You can check whether a trust or individual hospital has signed up, whether signing up and practising are the same maybe a different matter.
All My trust has
View attachment 60064
Aye, I changed location because of privacy thoughts after being on BBC TV Breakfast.I'm S bury, went to school in Derby
Since you change your location a few weeks ago you appear to now live in
https://forum.alzheimers.org.uk/misc/location-info?location=South+of+the+Border
On the verge of doing that. Waiting to see if we can see doc. To be fair, we did get an appointment one week ago, but this morning even the sec isn't calling us back. Obvs it's going to be weekend now, but if we don't get any further, I will just take up position on a chair brought from home (camping stool - always goes to hospital with me!) outside the ward door on Monday morning, and will tag along with the doc, kicking and screaming if necessary, so I can be there when they examine dad.I really sympathise with your problems. To cut a long story short, Mum also had a fractured spine but the hospital failed to identify this. They stated that her sudden inability to stand/walk was due to 'dementia'. She was in a great deal of pain. The doctors initially stated that this was due to 'spending too long in bed', then denied that she was in pain, recording 'daughter thinks she can gauge Mum's pain better than anyone but we have pain chart' Yes, but it wasn't being filled in properly and staff didn't know Mum!!! Mum subsequently spent 3 months in hospital, having walked into A&E for treatment to a cut eyebrow. They still hadn't identified the cause of her pain by the time she was discharged. When I took the afternoon off work to speak to a consultant I was left waiting for 3 hours then informed that he had gone home. I eventually spoke to the doctors by turning up first thing in the morning and waiting for them to arrive, so they couldn't avoid me. I also have H&W POA. There is a lengthy complaint going to the hospital and Quality Care Commission......
Go to the PALS team at the hospital, explain what's going on and demand that you are allowed to visit your Dad outside of normal visiting hours. My complaint to PALS got passed up to a director as the ward wouldn't respond to PALS and that got things moving for a while. It's awful that families have to resort to this just to get adequate care for patients with dementia but don't give up. Keep on at them!
My sister has written to PALS. No response as yet. We never got a callback from the Consultant's sec. How bad it that? We eventually met with the SHO who confirmed that dad will NOT be discharged (no-one has taken responsibility for cancelling the care home visit to assess though, so we've done that). She also said we can call the Consultant's sec and ask for an appointment to discuss dad at any time. We told her there is an answerphone and no callback and she looked puzzled. Not sure what else to do about this except loiter around by the ward door and pounce on doctor unannounced, which doesn't seem right or sensible. Anyway, it's the weekend now so nothing will happen for next 2 days. Dad still writhing around in pain as at 5pm yesterday. He didn't want us to go, but in the end we just had to walk away while he cried and shouted at us. God, I hate all this.I really sympathise with your problems. To cut a long story short, Mum also had a fractured spine but the hospital failed to identify this. They stated that her sudden inability to stand/walk was due to 'dementia'. She was in a great deal of pain. The doctors initially stated that this was due to 'spending too long in bed', then denied that she was in pain, recording 'daughter thinks she can gauge Mum's pain better than anyone but we have pain chart' Yes, but it wasn't being filled in properly and staff didn't know Mum!!! Mum subsequently spent 3 months in hospital, having walked into A&E for treatment to a cut eyebrow. They still hadn't identified the cause of her pain by the time she was discharged. When I took the afternoon off work to speak to a consultant I was left waiting for 3 hours then informed that he had gone home. I eventually spoke to the doctors by turning up first thing in the morning and waiting for them to arrive, so they couldn't avoid me. I also have H&W POA. There is a lengthy complaint going to the hospital and Quality Care Commission......
Go to the PALS team at the hospital, explain what's going on and demand that you are allowed to visit your Dad outside of normal visiting hours. My complaint to PALS got passed up to a director as the ward wouldn't respond to PALS and that got things moving for a while. It's awful that families have to resort to this just to get adequate care for patients with dementia but don't give up. Keep on at them!
How did they manage your mum's pain in the end?
Thanks. We battle on.I had to keep pushing for effective pain relief but it wasn't easy. When I pointed out that Mum was clearly in severe pain when sitting in the chair they prescribed pain relief 'only when sitting in chair'!! They then carried on assessing for pain when Mum was in bed (when the pain was reduced). Mum was on Codeine and they eventually doubled the dose. After 7 weeks of not being able to stand up/walk Mum then got up and walked. The doctors stated that this was due to 'fluctuating dementia' and they hadn't increased the pain relief earlier as it might have negatively affected her mobility.... They then put her on a morphine patch which resulted in her being over-sedated (comatose), unable to mobilise or eat/drink. They refused to reduce/stop the morphine due to 'pain', despite previously insisting that she was not in any pain. They kept asking how I knew Mum was in pain, as if I was making it up. Er, the tears in her eyes, wincing, screaming, reaching to touch her back, looking like she was in pain, sudden inability to stand up/walk and saying that her back hurt were a bit of a give away. The dementia nurse and physio also reported that Mum was in pain but the medical team still didn't seem to believe this. The refused to carry out an x-ray on the grounds 'it would be too hard on her back'.
Mum is now back on the codeine and the constipation is being managed with a daily laxative. Out of the various pain relief meds tried the codeine worked the best in terms of effective pain relief and least side-effects but it can be a case of 'trial & error' to identify which works best. Mum became homeless during her hospital stay as her residential home asked for an assessment and the hospital didn't do one. The doctor stated 'we wouldn't have this problem if you looked after Mum yourself'. She has now had to move to a nursing home. Hopefully things won't get that bad for your Dad but I agree that it is awful to see someone in pain whilst those that should be caring stand by and do very little. I wish you luck with the battles ahead.
Yes there is a daily meeting, and it now seems that all included in that meeting now agree dad's pain is bad, needs to be sorted and that he shouldn't be discharged until that has happened. But we still get comments from the nurses and discharge team that he is medically fit. Discharge lady now says definitely no discharge till pain under control, but certain members of staff don't seem to have got the message and so we are getting occasional conflicting communication which naturally makes us worried. We are now, however, reassured by the SHO that he will not be discharged until pain is hopefully less and can be managed by care home staff, but so far he has had the morphine patch since Tues and it was increased from 5mg to 10mg on Weds, but as at last night he was still having these horrendous contraction-type spasms of pain which make him cry for help for about 40 secs ever 4-5 mins. The nursing staff must have hearts of steel because they completely ignore his cries for help but, since there's nothing they can do for him, I suppose they would 'waste' a lot of time comforting him if he's getting all the help that is available at the moment and they have got enough to do. There are members of staff (healthcare assistants) stationed next to other patients 24/7 on dad's ward as they are in danger of hurting themselves if they try to get out of bed, and these members of staff just sit there and listen as dad cries out in pain. It's hard to watch, but I suppose they are only doing the job they are assigned to by the nurse and cannot interfere. As his daughter, I find it very distressing, and I would find it extremely unsettling if I were a patient on the ward or a visitor to the ward.There is supposed to be a Multidisciplinary Team Meeting to discuss patients. This meeting, as the name suggests, should include representatives from surgical teams, nursing teams, in fact all the various teams that are involved in a patient's care. Ask the Ward Manager (or whatever they call them in your Trust) for a copy of the MDT notes that include your father. Whether you have POA or not, if you are next of kin they should respond to this. They may not have to disclose them to you (not sure if this is something they can freely share with you as my experience is only when solicitors get involved and they are asked to disclose these meeting notes) but it will alert them to the fact that they should be discussing your father at these meetings. Nurses will know that your father is suffering pain in these waves and should be reporting it to the meeting, at which the doctors/consultant should be present.
I just find it weird that these members of staff who work day in day out with dementia patients are so unprepared for dealing with them. I know each dementia patient is different, but I am daily amazed by their lack of understanding and empathy. I am, of course, extremely sensitive to everything at the moment, being in such awful circumstances and watching my dad's confusion and pain, so I may be being overly critical, and when all this is over maybe I'll look back and think they were just doing the best they could in difficult circumstances. Only time will tell. At the moment I want to shout and scream.Reading posts this morning I am feeling outraged whether it is filling in a document with volume of pee and description of poo to your father being given hand written notes to keep quiet.
It is as if these people never read or think about anything to do with dementia even though it is the biggest medical issue of our age.
I find that the best care workers John has in his day care are the ones who have or had parents with dementia. I don’t need to spell out the problems to them. They get it immediately and all agree that when the problem is in your own family you see the whole picture forcefully.