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I have had to involve PALS - Carers UK Forum

I have had to involve PALS

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There has been so much going on I just don't know where to start. My husbands CPN doesn't know much about medication and in the 8 months she has taken over as his CPN just comes and chats generally about anything. Any attempts by me at conversation as his sole carer gets ignored, recently he has become manic and I alerted them about this. I had no return phone call. Nothing. I rang several days later but yet again no reply. The Consultant is part time as is the CPN but surely there must be someone in that team to listen? so I took him to see my GP. She could tell straight away that my husband was on a decline and ill. So she tried to contact the Consultant. No joy. She didn't get a reply back either. After several days my GP told me she had managed to get a reply and one of my husbands meds could be increased. THIS IS A LONG STORY and I am not going to bore you all with the details or write my fingers to the bone, but one of the weeks his CPN came here she just said Hello to my husband, he was quite quiet that day. I was in the other room, all I could hear was SILENCE, after 10 mins I went into the other room to see if all was OK. The CPN was just sat staring at my husband, so I asked her if she was going to speak to encourage him to let her know how he was feeling? she stood up and said she was going to give him his fortnightly injection and leave. I asked her if she was REALLY a CPN as she isn't using her skill or training. Her back stiffened and she said OF COURSE I AM A CPN, so I asked her if she was our key worker, she said yes, then I asked if she was our care co ordinator, she said yes, so I said............care co ordinate then as my husband has been unwell now for almost 3 months, I have had hardly any sleep, hes up early and sat out in the garden from 3 am sometimes, sometimes he has music and tv on, I am finding it hard to manage him.

She said she thought he was looking fine!!!!

I have cared for my husband for almost 29 yrs. I know when hes unwell.

Anyway, i got a letter a few days later from her mgr saying I had 'threatened' her and had become 'personalizing' !

I didn't shout, I didn't swear I just asked her direct questions, I was emotional yes, I was flagging and feeling very worn out with no safety net and them ignoring my plea that my husband was unwell.
He was sat there with voices in his head and feeling he was Jesus, but thats OK is it? he was having grandious thoughts and ideas, he was angry one minute and laughing the next, that's normal is it? noooooooooooo, not for him.

I know what the triggers are for him with his illness.

I made a fuss and called the Doctor, my GP was flabbergasted at the wording in the letter.

She asked them to get an assessment from the crisis team. They eventually came and assessed the situation as my husband 'standing up for himself' in refusing to do the washing up...............OMG......I try to keep him grounded in the REAL WORLD and encourage him to do things that he normally does, thats part and parcel of trying to keep him 'with it' he refuses of course, he thinks hes too special to do those things, they wrote me and said the assessment was that they thought I was controlling and it was a marital domestic!

My husband is more lucid now and he is appalled by this. There is more to this story but hard to write all of this. They have made me feel humiliated, knocked the stuffing out of me. I have had almost 4 months now with no communication from there except via the GP. They didn't beleive me when my husband ended up in a wheelchair that it was one of the new meds they put him on for psychosis that left him like a vegetable for 3 yrs, he had been undergoing CT and MRI scans with no conclusive results, ya know what? it was the drug! we took our findings to the GP she was the one that listened and acted, and now my husband can dress himself, walk, see to his own daily tasks and even talk and not even fall out of the bed or fall over or have suicidal thoughts anymore, am I uncaring? is it me thats not being correct? they have made me doubt myself.

My poor husband whose almost 60 now and myself 54 this year, he said to me [and it tore my heart out] that if I hadn't married him I wouldn't be having to go through this treatement from them and he feels guilty. I said NO NO NO, its not you, its not the illness, its them..........they don't listen.

Like I say, there is a huge amount in this and this is just a bit of it.

I had to get intouch with PALS and RETHINK someone from RETHINK I know where from my carers meeting and she is coming with me to support me.

I have been feeling so down, the stuffings gone out of me, I cry just at the drop of a hat, but I know I have to follow this through.

Since the cpn said that I had threatened her she comes with another cpn as her body gaurd, have you heard of such a thing? I don't do violence, if I did, she wouldnt have walked out of her on her own I would have screamed and pushed her out of my home...........but I didnt.
Sue, what has happened here is that the CPN's report has affected the Crisis Team's appraisal of the situation. Your Rethink worker will hopefully help to straighten this out but their whole attitude is ridiculous.

For future visits by the CPN, perhaps you should have a supporter present to take notes of what is said and done, and make the point if challenged that you feel threatened in your own home by two CPN's being present when you have only ever challenged their professionalism, which they seem to find threatening. Image
Hi Sue,
It's dreadful that one inefficient nurse can have this effect on your life.
I think Charles's idea to have someone there when she calls again is great or it's just going to be her word against yours. And we all know who those in charge will believe.

I hope you get some help with this, it's very daunting fighting 'the powers that be' on your own
Good luck and let us know how you get on please.
Her word and her colleague's - who is most likely to support her colleague.
I think I would put in a formal complaint to the NHS using the correct procedure, and request a new case-worker : this relationship has broken down and the damage has already been done. Its amazing the amount of difference that can make.
YOU ARE RIGHT I do feel threatened in my own home, this wouldn't be a complete lie either. I took all the documentation to my brothers today and he thinks they are relying on their 'expertize' alone and not taking into account my experience and expertize over the 29 yrs, it is ridiculous, never the less, I do feel bad, they have given me a good kick in
Sorry, what is PALS?

Outside care or respite certainly isn't the best idea sometimes. Several times over the last 6 months I've had to save hubby from autonomic dysreflexia, a potential killer, because the PA didn't know what to do or didn't even know that she'd done something wrong.
Trying to find care which is up to your standards and needs for your caree, isn't as easy as some people think. Or respite? How do you know that your caree is going to be safe?

All the best of luck to you, Sue. As if you don't have enough to cope with as it is.
YOU ARE RIGHT I do feel threatened in my own home, this wouldn't be a complete lie either. I took all the documentation to my brothers today and he thinks they are relying on their 'expertize' alone and not taking into account my experience and expertize over the 29 yrs, it is ridiculous, never the less, I do feel bad, they have given me a good kick in
I am so sorry that this is happening to you, Sue, I realise how enormously traumatic and stressful these things are, they can effect every aspect of how you live your life and can cause you to question everything you do in the context of the suspicion and allegations made against you, including the way in which you relate to and look after the person for whom you care, leaving you feeling incredibly vulnerable, insecure and threatened.

How long have they known your husband and how much time have they actually spent with him? How long have they known you and how much time have they actually spent with you? Professionals can be all too quick to make adverse judgements when they know very little about people and their circumstances and these judgements can have a life of their own, resulting in preconceptions which then adversely colour the perception of every new professional with whom you come into contact, the fact that this originated with a CPN trying to cover her professional failure makes this even more unacceptable. I believe that you would be absolutely justified in making a complaint about both the CPN's lack of professionalism and her subsequent behaviour and its consequences. If you can cope with it I would pursue a complaint in writing and pursue it until you have a retraction and apology in writing, a verbal apology, although convenient for the organisation as they do not have to acknowledge their fault, can prove worthless in these circumstances, you need something which is on record.

I also agree that you should have someone with you at all meetings, ideally an independent advocate rather than someone who you know and who could be accused of bias, you probably already know of organisations in your area which offer this service otherwise a search on the Internet usually yields results. You might want to consider having two advocates, one for your husband and one for yourself so that each is working separately with you and there can be no suggestion that you are influencing either your husband or his advocate. I know that when you have advocated for someone for many years it is not always ideal or easy to entrust that advocacy to someone else who does not know them and their needs as you do but sometimes this is the best option in circumstances such as this and when it is resolved you can continue as you were.

I also wonder if the meetings have to take place in your home, our homes should be a sanctuary but when something like this happens and the people causing the problem bring the problem into our homes they no longer feel like a place where we can close the door on them and feel safe and get on with our lives, especially in your situation where people are treating you as if you constitute a risk to them in your own home, it might help if you can get an advocate to insist that any visits take place elsewhere.

I hope that you get the outcome which you deserve quickly, Sue.
I have been bullied in our home in the past,Sue, by Social Services,and did not get anywhere with a complaint at stage 2, but stage 3, the complaint board upheld my complaint. Amazingly, even then, the Head of Social Services wrote to me(as he was told to),and hoped I was satisfied with the result, but he still backed his staff with what they had said to me!I gave up,and now, any meetings are held away from our home. I won't have them here now.
Good luck Sue,and I agree with the others, have someone else with you, preferably an independent advocate.
Sorry, what is PALS?
Patient Advice and Liaison Services

see here]http://www.pals.nhs.uk/[/url]