Hi all, my dad is STILL in hospital, 9 weeks after being admitted through care home neglect. He's been medically fit for discharge for 3 weeks now, minor hiccup since then, my mum had a small heart attack, but she's ok now, out and at home and ready to have him home. We were promised hospice care for dad, whilst mum recovered, but that fell through because palliative care didn't think he was due to die imminently (have really pushed for hospice and at the consultant, but this didn't work). He's in Shropshire HA and we live in Staffs HA - the fast track paper work was passed to Staffs 2 weeks ago. They rejected first claim, it was re-submitted with more evidence from consultants, they've now asked for more information. I have PALS on board, and no one seems to understand or be able to explain why we can't get my dad out so he can pass at home. The Discharge Liaison Officer at the hospital says the CCG don't usually ask for this level of info and she can't understand the delay. Trouble is, my dad has now stopped eating, the light has gone from his eyes and he's giving up. We know he is. We desperately want him home, we don't want him to die in that hospital. I'm sitting here facing another weekend of not being able to talk to anyone as they're not at work until Monday. I don't know what I'm asking, just ranting. By the time this is sorted, he'll probably be too ill to move, and that will be that. We promised him we'd get him home and I feel we're letting him down. It's all so sad.
CHC Fast track - not so fast...: Hi all, my... - PSP Association
CHC Fast track - not so fast...
Sasmock
This sounds awful.
Though your post is very clear it leaves me wondering.
It sounds as if things are unclear to the CCG. They are not rejecting the referal, but neither are they accepting care responsibility.
Do you know which hospice?
Have you contacted them and asked for an assessment?
They are experts at this and their voice is well respected.
If you can't contact them directly ask the Doctor to make a referral.
I am sorry to say, but if the hospice accept him the hospital will most likely simply acquiesce.
They usually do assess in hospital.
Yes, you want him to pass at home some hospices will help with that too.
Wishing you the best at this terrible time.
Warmly
Kevin
Hi Kevin, thanks for your comment - yes I've spoken to the hospice manager at length. It's the hospice where dad used to go for day therapies before he went in to the care home for two week's respite, so they know him well, and had said that they 'd be happy to have him if they received the right paper work from the hospital. An assessment was done, but the palliative consultant felt that, although dad was palliative, he was medically stable and wasn't a suitable candidate for hospice at this time. I really don't understand why he can't have some respite there. I'm almost scared to ask for another hospice assessment now in case it delays or confuses the process further - we know he's giving up and feel he hasn't got long, but the docs keep telling us he's fine and could go on for months. I've really pushed the Discharge team and the hospice, spoken to every health professional I can get my hands on, and yelled at the consultant, and I don't know where to go from here. PALS keep phoning me and assuring me that everything that can done is being done. But I've heard nothing for two days, and now the weekend. At a complete loss. He just wants to come home. He can't speak in more than an occasional whisper, but when he does, he just says 'home'. It's breaking my heart.
My husband was refused respite in the Hospice at first. Then...
He had asked about it during the day sessions he went to but was lied to and told they didn't do that there! Then a man he had become friends with mentioned he was going in for a week's respite! He had Parkinson's and went in every couple of months! So I asked someone why my husband had been told something different. Within a couple of weeks he went in for a week's respite!! Conclusion from all of this? They all lie! They DO take patients for respite and you don't have to need Palliative Care to qualify but your description of your Dad makes me think he probably qualifies for it anyway if by some bizarre chance that is one of their rules.
People like your Dad are bed blockers as we constantly hear but whose fault is it? Certainly not his! Can you get him home to care for him? Can you contact your MP and the one for the area in Shropshire where he is? Tell them both you are desperate? That is no lie because as you say he will die there otherwise.
Is there a branch of Healthwatch near you? Another near the hospital? You could contact them for help and quickly! Contact one branch and tell them what is happening. I am so sorry for you and Healthwatch is probably a good bet. Tell the hospital you are contacting the local MP's. They don't like MP's asking questions...but make sure you do it! Make sure the MP's know it is REALLY urgent!
It is Shrewsbury hospital isn't it? Or have I got that wrong? You could demand that PALS get you an appointment with the Chief Exec and also put in writing to them what you have told us but make it a formal complaint. Tell them you don't want to do it but you are being left with no choice!
Have you been in contact with the CQC? Tell them how long your Dad has been in hospital.
Tell the hospital you are doing it and that you are seriously thinking of contacting the press. The one time I got action at the hospital was when I threathened them with the CQC! They moved so quickly it was unreal. You don't gave to but threathen it? I would actually do it to be honest. I didn't have to do it because they went into top gear to sort the problem out then, had they not I would have contacted the CQC for sure.
In fact would you contact the press? Have you got the energy? They would definitely be interested in this. I think they might shift their backsides into gear if you did. No hospital likes bad publicity?
If I think of anything else I will let you know. Make bullet points to help you and write down what you will do. This is all over the place...sorry! I am feeling really tired.
Love and hugs to you.
Marie x
Thank you so much Marie - I've just sent an advocacy request to Healthwatch - I've not heard of them before, they look useful. I've also found out there is a Clinical Site Manager available to speak to at the hospital (it's PRH, not Shrewsbury), and they have the Chief Exec on call over the weekend. So I'm going to try that. We do already have PALS involved and they promised me most sincerely that they'd call back on Wednesday last week to update me. Still nothing. So disappointing. The hospital are blaming Staffs CCG and the hospice, the hospice blamed the hospital, the hospital discharge staff are blaming the consultant, and we're just going around in circles. My mum doesn't want the press involved, and I have to respect her thoughts at the moment, she's totally stressed out with it all. Can't thank you all enough for kind comments and just being there to talk it over with x
Hi Sasmock
Gosh, you have covered the bases so well and done so much work on this.
I see there are some useful comments below. So I will not repeat them.
It would appear to be a failing of the CCG. Fast Track assessments can be done my the clinicians at the hospital. The service should be provided immediately the assessment is complete.
My guess is that because he is 'stable' and receiving appropriate nursing care they are dragging things out because, as you say, they do not have the Care Services for home care. I would put money they don't haver a nursing home bed either and they don't think he needs a hospice bed. This is all guessing. Its a horrible mess.
I think I would be going after the CCG rather than the hospital on this one. A letter hand delivered and marked urgent to either or both of these, making a formal complaint. Making it a formal complaint means the letter has to be kept in the complaints file along with the action they took and it then forms part of their next quality review by the CQC.
Shropshire CCG
Dr Julian Povey - Clinical Chair
William Hutton - Lay Member, Audit Chair, Vice Chair
Shropshire Clinical Commissioning Group
William Farr House
Mytton Oak Road
Shrewsbury SY3 8XL
Tel: 01743 277500 (main switchboard)
Email: SHRCCG.ShropshireCCG@nhs.net
I expect you have already covered this base, but...
I do wish you well its a tough time for you all and you are having to fight every inch.
Best
Kevin
Thanks so much Kevin - I hadn't thought of contacting CCG directly. It's Staffs CCG that the application has gone to, so I've just looked up their contact details and will write a letter now. Thank you for the prompt! Waiting for the Clinical Site Manager to call back now, she's looking in to what's going on. I'm feeling all militant now - bring it on!
Haha I've just found out I can go in to their offices on Monday morning. Maybe I could just turn up with my letter and refuse to move until they've answered my questions!
Hi
Few suggestions may help, to get him home quickly discuss with adult services depends on dads financial status but they will fund a large portion of care after assessment, if he has the money i would have him home after you have got carepackage sorted they will be falling over theirselves if you are self funding! The CHC funding will be backdated from your application date .
Our hospice will do emergency cover at home until package is in, discuss this with them.
We had this with Rog when he cascaded down, they have no concept of how their ineptitude destroys everyone involved in caring for a loved one.
The system is broken.
Thinking of you
Julie
Hi Sasmock I truly understand what you are going through. My hubby was medically fit to be discharged from hospital earlier this year and we seemed to be jumping through hoops. In the end my family said if he is medically fit we are taking him home because that is his wish so get discharge papers ready we are taking him home whether you like it or not. It was a battle but we brought him home. Then involved GP, OT, DN, hospice. I know it's hard but Don't Give Up....bring your dad home.... Love Jx
This is what I feel like doing - but dad is completely immobile, can't sit up or move at all - how will we get him out of transport on to bed, how will we manage without carers? We keep being told that our area has really low coverage and getting 4 visits a day will be challenging. What if we get him out and no one can come to help? I'm so scared. Scared of him dying in there, scared of not doing enough to get him out in time. Reading through all suggestions now - I want to do something today, not wait until Monday, going to call the hospital now and ask for the big cheese - surely there must be someone on weekend cover who can make decisions?!!
It is horrendously difficult and I am aware of the problems because my hubby is completely immobile but we could see him deteriorate a little more each day. I am so so sorry for what you are going through my heart goes out to you. Love Jx
S there is!! Here he/she is called the Coordinator! If not ask for the Matron. They are usually off at weekends but the Coordinators are on duty!
Marie x
I got the Clinical Site Manager who's responsible for basically everything at weekends. We sat and went through his folder together. The CHC fast track was completed on 11th !!! They're NOT waiting for more info. They're just waiting on the care package. So I've been lied to again. She now says it's Staffs Social Services who are holding things up and I need to call them on Monday morning. Someone else to blame! He's entitled to those services within 48 hours of assessment, and we're still being told to wait, whilst he fades. What of the emergency carers we were assured would visit until regular ones were scheduled??!! She agreed it was all very wrong and I need to shout, scream and cry at everyone to get things moving. His notes showed the consultants gave him two months max, but we both agreed we'd be surprised if he lasted until next week. He's not eating, drinking or engaging at all, his catheter bag is half full of the darkest urine, looks just like blood. His hair is falling out in big chunks, his lips are retracted. His light has gone. I've promised him I'm going in to ass kicking mode on Monday BIG TIME and I WILL get him home x
Such inefficiency !!! It shouldn't be up to you to chase. Just when you really need them to be supportive.
Big hug from Jean. You have done so well chasing this when you are in such a worrying place. Good luck in getting him home quickly where you can tend to him.
xxx
Thank you Jean - all hugs appreciated right now...and maybe a large gin and tonic...that would hit the spot!!
Cheers ! Its ready. I'll have to drink yours for you !!!!
S did you mention the CQC? They will be suck with worry if you contact them. I would do that on Monday asap! What a complete shambles? Your poor dear Father. Give him a big hug and kiss. Your Mother too. What heartbreak.
Marie x
How dreadful. My heart goes out to you. We were in the same situation but the hospital organised everything quickly. It is so distressing to realise how much of a lottery it is. I know I was dreading a fight because I felt I had already drained all my resources. I have no more suggestions to add to the many above but send a comforting hug.
love, Jean x
A bit late to the 'party' 😉, but lots of good advice already been given. It's Monday so go kick some 'booty' big time. Keep fighting, I so hope you manage to get him home quickly now. Hugs. CJ x
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