Cch funding and assessment!

[Flutterbyes]

Hello all 🙂 I just wondered if any one can help with a quick question before my mum in law visits her hubby in hospital this afternoon! Doreen has been sent around the houses asking for an assessment for cch! Doctor told her to contact PALS which she did. They told her speak to Geoff’s staff nurse which she did. The staff nurse said unless he is 6 weeks off death they will not do and there are no funds in the NHS. So.... Doreen when to Scocial Services who are putting in hoists and asked them. They said contact PALS again and explain what the staff nurse said. Doreen went back to pals who have contacted the hospital Matron with a complaint that Geoff’s name has not been put forward. This has now caused the Staff Nurse to ring Doreen and she had said that the charity has got this wrong! Geoff cannot apply for cch until he is ready for discharge. They are still treating the pneumonia and until he reaches a discharge state they will not fill in the forms! Does anyone know if this is correct as she was rather rude and abrupt and told Doreen to make sure the charity understands this! My word it is difficult or is it us? I am trying to help but as I am at work it’s difficult to have telephone conversations. Waiting in anticipation 😕 Michelle x

[doglington]

No wisdom to offer but the Staff nurse is sounding caught out !!!

The " fast track " is probably not triggered until he is ready for discharge and then your mother can say she will not have him home until care is in place.

What a farce it is !!!

Good luck. Jean xx

[JR61]

This cannot be true, as I rang Dad’s Community Neuro Matron the morning following his admittance to hospital and she applied immediately for fast track, dad stayed in the hospital for a month after that, before a suitable nursing home with a vacancy was found but we received the letter confirming he had been granted it before he was transferred to the nursing home. I remember because I was able to tell them about the funding for his place there whilst I was investigating various homes for him. It may be the local procedure at your local hospital but every time the subject of CHC is brought up by members on this site it sounds like there is a culture of smoke and mirrors to thwart the endeavours of concerned family members, which adds to the whole stressful experience. Sadly, it’s not just PSP patients who experience this ridiculous situation, our myriad systems have become so multilayered, with all of the tinkering that ALL governments do to fit in with the political agenda of the day and the only ones who suffer are the patients. Shame on them all. I’m angry again, sorry! Ruth x

[Flutterbyes in reply to JR61]

Thank you for your reply Ruth. I think that Doreen and the Staff Nurse got off on the wrong foot. Doreen has looked after Geoff for four years with no help from any authority etc. Now he has been admitted social services have said hoists etc need putting in etc etc etc. So we have convinced her it’s for both their safety and well-being and to have done ASAP. This is now happening and Doreen has accepted that she will need more help as Geoff’s rapidly deteriorating. Since being in hospital with aspiration and pneumonia he has been put onto puréed food (not well enough for peg) and all liquids to have thicker added. He has little movement, very little speech ( occasion yes no etc) and sleeps a lot. Today I found out from Doreen’s call from the nurse that he is refusing physio and refusing to get out of bed to sit in a chair. Nurse said if he refuses they cannot make him. I think this was a shock to Doreen. He is refusing his food but not his puddings! What else has he got bless him. I will tell Doreen that I think the general idea is he doesn’t have to be in hospital and due to be discharged before they can put her forward! Wow what another day! Xx

[Marie_14]

Michelle the nurse has been caught out and is now trying to turn things around!! Keep in contact with PALS and tell them the truth as you have told us! It is not up to the nurse to decide if the NHS has any money or not!! We all know they are short of money and we all know they make it so hard for people to get CHC funding. That is not your M-in-L's fault!!! Fight this because it is a total disgrace!

Marie x

[Flutterbyes]

Hi Marie we will fight. I just dont know if the chc is only done on discharge? Or is it something that can be started now! I am trying to read up but I am getting confused lol! I think that Doreen and the sister got off on the wrong foot then Pals passing to the hospital matron has escalated it for the Staff nurse to go on the phone to Doreen! She has said it will be looked at at discharge state. This is what I am trying to understand. I am sure others have applied but not whilst in hospital. Also prior to Geoff being admitted Doreen solely looked after him with no other carers etc. Social services have only just been involved and the doctor told her to contact Pals to apply for CHC! So their doctor doesn’t seem to know the procedure! No wonder Doreen is getting frustrated and to the point of giving up. Nothing is ever simple. Thank heavens for this site. Love and best wishes Michelle xx

[Marie_14]

Michelle I know what you mean. GP's usually don't have a clue about PSP or CBD or any related conditions! It is the same if she ends up in hospital. So print off the symptoms and take it to the hospital and GP. I would be tempted to do an extra copy for the lying nurse. Maybe she doesn't know what she is dealing with?

It is normal for CHC to be dealt with in hospital but some of them make their own rules up! That is simply wrong. Can you ask for the Palliative Care Team to get involved and you can explain the situation to them?

Also the SALT team too? They will check her swallowing. Might as well see them while she is in there? You can say it is urgent. They tend not to have many people in that department. I had to tell them I was going to report them to the CQC as I was seriously concerned as to their ability to deliver the service!! My husband was at home and next day we had a visit from someone. The following week he had a swallow test. That's just one of many examples of the fights ahead!!

As PALS are now involved I would keep in contact with them. I would also let them know about the phone call received from that nurse!! She needs someone to sort her out. Plus she is wrong!! You can apply for CHC whilst in hospital. Tell PALS that...just in case they don't know! I think they will know but just in case?

Marie x

[Flutterbyes in reply to Marie_14]

Thanks Marie, what you have just said is more or less what I told Doreen. I have visited Geoff tonight in hospital. He isn’t eating properly. The swallow team have been down and have put him on puréed foods and thickener in fluids. Geoff is refusing both. He is revision physio and to get out of bed. I think he is giving up bless him. Doreen has had the hoist fitting confirmation for Tuesday next week. The doctor spoken to her today and said they are hoping Geoff can get rid of his infection and be moved onto the discharge ward. From there if nothing is in place he will be placed into respite care. Then hopefully home. Doreen is loosing her fight because she feels she is getting nowhere! I will chat to her in the morning when we are both fresh and alert and hopefully tomorrow is another day and we might get a bit further! Many thanks again for your advice xxx

[Marie_14]

Michelle if the hoist goes in on Tuesday then all he needs are carers and a hispital bed if he hasn't goit one? So if he gets CHC asap problem solved?

She could do with having a meeting with PALS. Tell her to make lots of notes. Could you go to the meeting with her? Does she know she is also entitled to an Ambulance to get him home or should he need any tests at the hospital to take him there? Not one of the blue light ones but a smaller one. I am assuming he has a wheelchair? If not they can get him home on a stretcher. I know because I did this with my husband to get to an appointment and we went there and back in one and he was on a stretcher. You need to ring the Ambulance service for this by the way.

They should have applied for CHC by now. So if they haven't she needs to be asking why. If they say he can't have it until he is leaving tell them that is rubbish. There is a helpful site called Beacon who will act on your behalf if need be. You do have to pay but not sure how much. Don't think it's too much. Ring them!

I feel so very sorry for her. It sounds very much as though her husband is giving up. My husband was never even offered physio and ended up in a Care Home for a while we thought! In fact while in there he ended up refusing to get out of bed. I spoke to him and told him how bad that was but by then he just didn't care!

It's bad enough as things are without all of this. Give her a big hug from us all on the site!! Help her to fight back Michelle.

Marie x

[Flutterbyes]

Bless you Marie xx Geoff has got a hospital bed at home. He also has a wheelchair and a special shower chair is on order. The bathroom is adapted. I think a special ramp is being looked into. We are now aware of the hospital transportation service and we recently used it for Geoff to visit his specialist. I will speak to Doreen in the morning and hopefully get her to ask for a meeting with Pals. Both my hubby and myself work full time and I pat the moment there is no one to take over for me until Friday. If we can arrange the meeting after or on Friday that will be great as I can get involved. I will also look at Beacon. So much to do lol! Well I must go to bed as have a headache and I am feeling deflated!

Thank you for taking time out to reply I really do appreciate it 😊 xx

[Kevin_1]

Hi Michelle

I'm very much in agreement with the other posts here.

I am concerned that she appears to have told Doreen that she was making a referral and now says she has not. The staff nurse does seem to be on the obstructive side of things.

I am not aware of any rules regarding exactly when a referral should be made. I think that is one of many small omissions in the regulations. If an assessment is requested they must do it prior to discharge. That much is clear.

In fairness I can see a case for delaying it. A good clinical argument might be that until Geoff recovers as much as he might, they are not able to assess his needs.

You might like to get PALS to give you an assurance that a referral to the Care Commissioning Group will be made before discharge with a view to have a 'Check List' (which is the first step) carried out with a view to a 'Fast Track' assessment being undertaken. (second stage).

I would seek that in writing from PALS. PALS will have to get that assurance from the clinical team, but PALS is part of the Trust and so such an assurance, in writing, is the best that can be sought. I would also point out to PALS that you need this as the staff nurse has misinformed Doreen once over end of life care and then went on to say she was making the referral and now you find she has not.

What I would say to you very strongly is when the time comes refuse to have him home until that assessment has been done. I once saw a carer facing off a whole multidisciplinary team who said, "Well, we will just send her home in an ambulance." The carer/husband replied, "are you going to leave her on the front lawn because I won't be in." The assessment was done the next day and a nursing home found and paid for.

I do wish you all the best. It sounds a horrible fight to have on top of the pain and trials of PSP and caring.

Hugs to you all

Warmly

Kevin

[Flutterbyes in reply to Kevin_1]

Good morning Kevin thank you for your reply x I have just spoken to Doreen. She has had a call from the District nurse who has heard what’s going on. She has said that if the hospital do not put Geoff forward then she will. I have said to Doreen to request a meeting with PALS as I think this Staff Nurse is out of order calling Doreen and telling her to ge her facts right and stating an assessment will not be done until discharge! Pals contacted the Matron questioning the earlier response so they do know what’s happening! I think the staff nurse had been brought to task and rang Doreen and vented!!! Geoff bless him is not good at all. I gave him a couple of teaspoons full of rice pudding last night and then he said no. He had no drip up and the antibiotics bag was empty and disconnected. I couldn’t see any fluids. I think in his own way he is giving up. He apparently refuses physio and to be out of bed. He only says the occasion one word. The nurse on duty said he is only eating a bit of yoghurt but that’s not going to sustain his needs! Hopefully I will have a little more time after tomorrow as trying to run a business until my parents are home. Then I can get to the bottom of who Doreen is talking to and who is arranging what. I have problems retaining info lol part of my conditions! So I screen shot lots and then try and remember how to put it all together in between customers.

I am going visiting again tonight so I might try and have a word with the staff nurse if she is available! It’s such a busy ward and trying to speak for a few minutes is nigh on impossible!

Well I must get on at work or mother dear will be giving me the sack again lol 😀.

Thank you Kevin

Have a lovely day and best wishes to yourself and Liz xx

[Kevin_1]

Gosh, you have so much on your plate!

You and Doreen together seem to have achieved so much. Bravo!

Are you going to have a sacking party?

Take care

Warmly

Kevin

xx