We have a community hospice nurse. Contact every fortnight alternating between telephoning and visiting.
They sit and ask questions and assess and that's it.
I've asked them what they do and they struggle to answer. They say vaguely that they keep all the care in place and help with needs with other agencies, but we do that just fine.
Can anyone tell me what their hospice community nurse does please?
The visits are just one more clinical intervention and we are trying to live as normal life as possible.
Thanks
Kevin
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Our hospice won't allocate Mum a CNS for some reason so can't give an answer but I am interested to hear what they do for others and if worth pushing for.
Some of these people want to live in our world and then they may know a bit more
Things have been a bit up and down me with my copd but getting there and archie is gone down a bit speech getting crap and his walking with carers is crap and getting to sleep a bit more
It's abit awkward sometimes with listening to Archie
What I find upsetting is how all have to fight to get CHC and I haven't really to be fair and the amount of support I get now is unreal .carers are here most of day then night sits for 7 nights
His decline has come on quickly since being home and had two infections as well
Kevin, John's speech is bad by SALT have given him a sortof iPad with a grid over it and an ABCkeyboard which speaks for him when he spells out words it also saves phrases. It is really good and when john can no longer make himself understood it will be very helpful. X
She comes every week and if there's any problems comes before .we also have d/n every week and because he's house bound we get people here instead of having to go anyway
John has been house bed bound for five years. The Parkinson's nurse come very rarely . She referred John eighteen months ahi to palliative , she though he was so advanced still heme though and I told thenp nurse if I need her I will contact .!
Hi Kevin. Sounds like a bit of 'box-ticking' to me. As you say, we want to live as normally as possible without visits from people who aren't contributing anything. I pulled the plug on the Parkinson's nurse right at the beginning as they admitted there wasn't much they could do. Is it just me, or are there times, no matter how helpful they are, that you wish they would all just go away? Take care.
Its a local charity. The nurses are experienced, but I suspect they are making a case for providing a very efficient service = numbers of patients / £ and a case like Liz's is very undemanding. Am I so cynical?
Thanks for your take... I am doubting myself a bit. We are thinking of 'unsubscribing'.
We have a palliative nurse from hospice, he is very helpfull doesn't really do nursing though, he suggests things, refers people to me and writes to our Gp a lot, even though the GP does little about it.
I am pleased we have him, as he is a reliable contact.
The nurse who visits us is barely pleasant and there is nothing for her to do at the stage we are at.
She saw a small bruise and wrote to the GP (Liz bruises very easily) so we have had to traipse up to the GP to have it looked at and to explain.
We are thinking of stopping the service as it is currently a negative benefit. So I'm am trying to see what sorts of things they do and whether we might need them later.
No he is not yet bedbound walks with walker shuffkes I should say very slowly and with pain. Yes pain management, which no one seems to understand, co dydramol and 600mg of ibuprofen.
Our palliative nurse is attached to hospice which is a charity hospice, we have regular visits from palliative nurse, the hospice OT, and hospice social worker. We don't have anyone else coming in. I try to manage C by myself as I also want life to be as normal as possible without a lot of strangers interfering, specially as no one seems to know much about PSP, even though I give them the info.
I am sorry to hear that C is in so much pain. That's what these folk are good at I guess.
We get the impression that they are more used to Cancer / pain and so forth. Somehow they seem not to get the cognitive thing, or as you say, know little about PSP.
In our area two Charities split the hospice work. The hospital, with whom we have had contact, are warm open, engage well with Liz etc.
This other group covers the community side and they seem distant and certainly don't go for 'engagement'.
I'm glad you have a good one.
Yes, we too are trying to lead a life where PSP is a fact and not a complete diary filler!
Is the pain from poor posture Kevin . John pain is mailpnly neck shoulder back .
We are limited in pain killers because he is in Warfarin ,as long he is straight in chair or bed he is not in pain but the dystonia s twists him .
Just for him into bed now but I cannot keep his head straight at all. I also suffer with cervical spomdylowis so have a n idea how he must be feeing except I can move and he cannot
We had a Community Nurse. Well we got rid of her after she upset us both and asked for the other to come instead. It took a while to happen as the first one didn't get the message and kept turning up for meetings we had arranged. So I had to tell her again in front of a lot of other people. She was not happy! Anyway got rid of her and got the other one who was much nicer.
Might be worth thinking of if you are unhappy with the person you have?
However they send different nurses and they are all much the same. Very professional, highly trained, a little distant, don't go for engagement with Liz. They don't try to understand her as a person and we are glad when they leave.
It might be agency culture thing. A very senior nurse did the initial assessment and she was so cold she was almost hostile. She also missed quite a few assessment areas as well!
Liz who is very easy going and accepting made a rather rude comment about her 'bedside manner.'
Liz's black eye was minor. Caused by bleeding when she hit her head falling against a wall during transfer. Very slight knock. . Everyone involved in her care is careful because she bruises so easily.
Our GP said there was a big push on to protect vulnerable people so everything is being reported. The nurses we have met from this charity seem very well trained, but not good at engaging (e.g. getting a decent relationship going with Liz or understanding her world other than clinically) and they seem to be 'by the book'.
It's more than not comforting it feels like being over policed and one slip and we are in trouble.
Reluctantly Liz and I don't feel able to keep them as a service. We have decided that Liz will do the explaining to them.
Maybe because I am a male carer and thus more likely to do physical hurt? I don't know.
Its weird - it is obvious to everyone we are very close and warm with each other.
Kevin never had one come around to George, Matron pops in every week, she is amazing. Happy thing are going ok for you both. George has another urine infection, bloody marvellous xxx
When my Dad was at home his CNS from the hospice came round on average fortnightly and prescribed all medications as he is as qualified as a doctor and would also talk to my Dad about how he feels etc and would also help mum and I with any other issues relating to Dad. He is one of the most amazing people I've met throughout Dads illness! The hospice community nurses would visit on average every 10 days and give us respite for 2 hours and they would talk to Dad, shave him, give gentle massage, wash his hair and file his forever long fingernails! Again we only found them brilliant! As far as I'm concerned they are there to help the patient and family through what is obviously a horrid and very stressful time! Personally we'd use them as much as possible and without their intervention over the last 2 years I dunno what would have happened.....does that help? Hugs x
I'm glad you got that. You and your Mum work so hard for your Dad's comfort and well being.
Every time we ask them what they do they can't answer. When I ask do you do this or that they invariably reply - "The carers do that."
We have a neurology team here. I'm hoping they can provide the clinical end of things when it becomes necessary.
This thread has us helped us think through the issue and we have decided to close our case. (I am being very polite - Liz said, "Blow them out of the water Kevin".
I'm actually very sorry to hear of your experience with the hospice Kevin!! And I'm very sorry for Liz too!! It was the hospice that kept us sane!! Dam shame they don't all follow the same code of conduct x
Our Hodpice experience has been really positive but we go to them. Our local community matron experience horrendous!! So we opted out of the latter, why have someone who adds nothing but stress to an already challenged situation. Slightly paying for it though as all equipment and access to continence nurse is through the useless community matron!! So I guess you need to check are they a gateway to anything you might need in the future??
Hope you and Liz coping either these hot hot days and nights
Tippyleaf the same thing happened to us! Stupid woman reduced Garry to tears and when he cried so did I. So I told her to get out and not to come back! There are 2 Community Matrons here so I asked for the other one. She was totally different thank goodness and helped with the CHC process. So check to see how many there are?
It seems down to the individual, having read the posts thinking maybe I should ask for a different community matron. The one we saw would be zero help with CHC !! Her opening question at her first visit was "where do you want to die" I was gobsmacked !!!! I thought the idea was to build a relationship before asking the tricky questions. I asked to see the form she had completed it and disagreed with 90% of it. Recorded no issues with continence, mobility, hearing, cognition and speech! I couldn't resist asking her who she thought the wheelchair belonged too and since I interpreted every word my hubby said reminded her it was his speech not mine that was the issue!!! !
But since others sing the praises of community Matron's guess we just had a 'bad un'!!!!
Same as the one we had first! Have you got carers or any contact with district nurses? You could ask them for their opinion? Some carers are good others not. So you will have to consider who to ask?
Have you got a good GP? Sadly we didn't. Because we switched Community Matrons she actually told me off!! I had gone to see another doctor but ended up seeing her! She was so rude and unprofessional I was stunned! She told me she was frightened to talk to me in case I reported her!! I should have done that after the vway she spoke to me but I had enough to contend with. I just looked at her and told her if she said something that upset me I just wouldn't come to see her again. Nor have I. I think perhaps I should change practice's to be honest.
Anyway if you are so unhappy with this woman make enquiries to see if there is another one. If you have a decent GP then you can explain that you are unhappy with the one you have. Fingers crossed for you.
Hi kevin. Firstly thank you for all the help and advice you've offered everyone 're CHC. It's helped me initially but fortunately I don't need to go through the wringer now as it's in place full time today.
Your question about community hospice nurse. My brother in law has advanced prostate cancer and my sister in law says the nurse is just a waste of time. Asks questions and does nothing. Doesn't know why she even comes to house. No help to you im afraid but sounds a similar story. All the best to you and your wife. Marie
Same John doesn't either the Parkinson's nurse admitted she was a bit quick in referring just she likes to get things ready in place , even arranged DNR , . But that was fine ,
Hi Kevin, some professionals are just a waste of space aren't they! You do get sick of people you fading your space but most do a good or reasonable job. The bad ones just seem to make things seem worse but I have held my cool and tried to make things work to our advantage but it doesn't always work. Ben attends the hospice day service so don't have the community nurse visiting, she is ok but reasonably new to the role and no previous experience of PSP.
Had our CHC case manager today along with the care agency, she is very nice but having a nightmare working out the CHC care package to give me some respite, the problem is when Ben needs the loo. He wears a convene so that part of it is fine, it's when he needs a 'number two' as he calls it. One carer really isn't safe to transfer him now and they suggested he wears a pad and I'm not sure he will be happy about that as he isn't doubly incontinent yet. So that is a problem to solve before I can have weekly respite, I'm desperate to have a bit of time to myself but looks like I have to wait.
Double edged swayed Kevin, I'm desperate to do a few normal things with friends but I can't compromise on his dignity. I'm feeling somewhat deflated. Xxx
Difficult I know. I dreaded the pads . In the end I used puppy pads on his chair and the bed. . John is Hoisted at all time so he doesn't wear bottoms anymore . At first I cut the crotch area out and he always had. A blanket infer his knees. That way I could hoist and remove easily on to a wheelie commode chair and I cleansed while in the chair ,
My mum no longer wears anything on her bottom half now so difficult trying to get underwear down whilst trying to use the commode she is not able to stand very much now and had a stand aid to get her from her chair to the commode. This is getting increasingly difficult as Mam is now leaning to the right and we have to turn her left to get on the commode
Ben not quite at that stage but I can feel it getting closer, I manage to transfer him to the commode but that is getting increasingly difficult due to his rigidness and his feet and legs not doing as they are told. I think the sit also from the brain have stopped relaying to his legs. This disease really does suck.
Thanks for the advice C, think I will be needing this soon, must be a whole different level you have to deal with when they become doubly incontinent although I am on red alert a lot of the time waiting for him to need the loo and it's a lengthy process from start to finish.
Keep the contact going. Ours was such a help. The can help getting other medication that the gp is reluctant to prescribe. When Brian was in discomfort the gp said to get liquid paracetamol but after talking with our hospice nurse who contacted the gp we was prescribed oramorph such a relief. We got the visits down to about every other month. They are a contact point if you are in doubt about anything or need help getting equipment or medication also they can fight your corner. You may think they are an intrusion on your life might you need them in a hurry so best to keep them on side. Jane xx
After years of skiing if they would try Botox fitting the peg ,etc .. endless CHC meetings with no replies . A do piete waste of my energy .
The Gp visited for a chat .. very rare ,
He left didn't think of any more ,
Received a letter to make an appt at the card of the elderly clinic we use to go to see the consultant ,
Six years since the last appt because John became completely housebound and we get to see the p nurse as and when , . She arranged the Palliative . And liaises about John Parkinson's meds. .
I was confused but rang the consultants Sec, she told me the Go had sent a letter becaus peg he was concerned , about nutrician etc ,.
Nobody seems to want to make any decisions and once again get passed pillar to post brungime me more stress, and my daughter.
The Sec spoke to the consultant and he told me I could go with my daughter and speak with him. She mentioned Frailty team .
Does any one know what difference thus will make . They appear to be a hospital team for people at home ,I suppose the d nurse nurses are limited in what to Feb so to support us
..maybe they will recommend peg Botox ,saliva suction machine .
I feel Maybe I need to apologise that we are still alive and causing such an embarrassment to the NHS because nobody knows what to do for us . And not done so for a few years this isn't new .
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