Hi all..me again with another 'less than straightforwards' CHC question. My dad triggered the checklist in our authority when he was at home on 12th July. He went in to temporary respite the next day as mom was having an eye op. On 22nd, he was taken in to hospital by ambulance, with kidney failure, bowel impaction, sepsis, etc. He's now been declared fit for discharge, but has lost ability to urinate and is catheterised. He's too weak to withstand having a feeding tube fitted and is on fully pureed diet, and aspirating with regular chest infections. He's had pneumonia since he went in to hospital too. The hospital he was admitted to is in a different HA, just over the border in Shropshire. The doctor has just told my mom that he doesn't qualify for CHC. I now can't get in touch with them as they're too busy to talk to me on the phone. The way I understand it is, they can't say he doesn't qualify without a full assessment. They can't do that without involving us and no one has. Have I got this right please? Just need to be forewarned before arguing with the doc tomorrow and insisting on things being done correctly. Thanks
CHC from hospital: Hi all..me again with... - PSP Association
CHC from hospital
Absolutely - kick up merry hell . The doctor is talking rubbish - you are entitled to a full assessment-usually a pre assessment to see if you tick enough boxes and then a full assessment which is done differently in different areas . And they have to involve you .Have you tried getting your district nurse involved - , do you have an OT and a community matron they are all good weapons and should be helping you .
Thank you - I've called everyone this afternoon and they're all on holiday! They're all in our HA, and the hospital is in a different HA so I don't have contacts there. I'm soooo frustrated not being able to do anything right now as they've all gone home or are 'too busy'. I have to try again tomorrow. But at least I can attack with more confidence now! I assume, if they send him home without funding in place, then it will be much harder to get things moving quickly again. This whole process is a nightmare!
You are right it is a nightmare but the excuse that they are too busy is outrageous - tell them you will be passing that one on to your MP and the press - might just make them think a bit and get names as well so you can quote who said what . They shouldn't send him home without funding or knowing what your care package is . But there is nothing to stop you being fast tracked for CHCfrom home if you qualify . I am afraid it is a case of" he who shouts loudest and causes the most upset ' is the one who gets results - don't be fobbed off . Good luck.
Don't let them bully you. They always take the easy way out despite the condition of the patient.
This is your father and that's all that's important. Wishing you strength 💛🙏
Thank you - they're choosing the wrong person to bully. I don't give up easily!
My neuro matron told me to ask for the jet team in our hospital before he could come home.
It shouldn't be necessary to know the wrinkles !!
We're all with you !!!
love, Jean xx
I understand exactly what you are saying. I too am going through this maze.
Do as I did this morning. Contact St Barnabas. They have a matron in every hospital independent of the NHS.
She has taken on our case and she has already got the ball rolling.
Wishing you luck
Deb
Hi Sasmoc
I am so, so sorry to hear how bad this is for your Dad and you and all.
Breaking this down:
Are you sure that he can be cared for at home? His needs sound too high for home care (which you don't have).
It sounds like he will need close monitoring by a Nurse. Possibly a community or hospice nurse in order to catch any further infections early. And, it does sound like that is a continuing vulnerability for him.
If you feel there is too little in place - Just refuse to have him home. They might say, "Well we will be sending him there anyway." And the most effective reply I heard in my NHS career was, "Good luck, I will be out!" It was said ever so politely. That carer got a CHC Nursing Home bed within a day.
Make notes of conversations including who you are talking to. If you are not already. This is essential. People stick to the book when they know this is happening.
So you have choices and maybe need advice. This is what the CHC assessment is about and you must be part of that process.
It does not matter which hospital in which Trust that hospital has a legal responsibility to do safe discharges. That does not mean they say the discharge is safe and adequate it means they have to assess the place and resources available to that person and ensure it is safe.
So we are into hospital discharge team territory. Have they done an assessment? Interviewed you? Made a recommendation? It is your father's statutory right to have this done under the various NHS laws and protocols. For them to doge that leaves them liable to charges of negligent treatment and more... and they know that.
Going back to CHC. He has a legal right to have an assessment. He should be assessed under 'Fast Track'.
My own response to the hospital (talk to the Ward Manager or Matron who are generally very on the ball and want to clear the bed safely to get it free for someone else) and say that you want a, "Fast Track CHC assessment because you think a discharge home without planning and resources being put in place would be unsafe."
Use those exact words. They are the proper language and they carry a lot of weight.
If they say he had one some months ago tell them that his circumstances have changed and the CCG have a legal liability to undertake one.
Stick to these simple words. They are the words a professional would use to indicate very precise concerns.
Do not give in to pressure and do take a note pad and let them see you are making notes.
This is not an aggressive approach. You will not upset them, This is a professional approach and they will respect it for that. I know - I've been on the receiving end.
These are the openers.
Do come back and ask for more info esp. as things change.
He sounds very much as if he qualifies for CHC.
You can never bother this forum too much.
We are all hear for each other.
My heart goes out to you and your Dad.
Kevin
👏👏👏👏👏👏👏 round of applause Kevin!! You are bloody amazing!!!!! X
Hi Kevin, I can't thank you enough for your lengthy reply. I'm working my way through it all now. Dad's been declared fit for discharge, and they're happy for him to come home (so they say). We're not even considering a care home, no matter what, as it was a care home's neglect that put him in hospital in the first place (complaint underway)! I was told that he didn't qualify for Fast track unless death was fairly imminent (which I know is a load of rubbish)! He only went as far as checklist, this was done one day before he went in to respite care, then onwards to hospital, and our HA said the checklist was now null and void and a new one should be done at the hospital. I've been pestering EVERYONE at the hospital for FIVE weeks, to get this done. They assured me that as soon as he was declared medically fit for discharge, it would be done and would take approx 48 hours, a care package would be put in place, etc. I was told repeatedly not to worry. I stood over the staff as they wrote it in his notes. Whilst he's waiting to be discharged, he's picked up a couple more infections, but is now infection free and ready to come home. His airflow mattress is being delivered tomorrow. But no one will discuss the care package, they keep saying 'we're sorting it'. No one has carried out an assessment or asked for our input, apart from the OT, who had a brief chat to me about his baseline mobility - what was he like before he came in to hospital, etc. Today, the doctor tells us he doesn't qualify and we will have to fund his care. So now I'm making notes of everything you've said and will speak to the right people tomorrow. I'll go in and refuse to budge until it's sorted. I can be a pain when I want to be. These people are still referring to him as 'the gentleman with Parkinson's' - this is five weeks after admission! I wish I had a pound for every time I've explained about PSP! Once again, a heartfelt thank you!
Strength to You Sasmock!
First off CHC regulations are most often not understood by any staff excepting those tasked with delivering it.
This is understandable to some degree. Why would a nurse in a hospsital take time out to train in a framework which is delivered by another specialist? They have enough training to pack in without that. Same goes for G.P.'s.
So it is common to get professionals, Drs and Nurses and Care Home Manager saying, "He doesn't qualify." When someone does. They are often just working off experience and not knowledge.
Fast Track is not just for people in their last two weeks of life. It is there to deliver a care package quickly where the full CHC assessment would leave someone without essential care, or often when they need the hospital bed and have to move quickly.
Always get an assessment it is your legal right.
I don't know if you have come across Beacon NHS. They are an arms length advocacy service for CHC. The advocate are mainly experienced nurses with a legal training. So they understand the way the NHS works and know the regulations. I have had dealings with them and they are exceptionally good.
You might like to go the their website and download their advice and information documents. Again these are very concise and informative.
beaconchc.co.uk/how-it-work...
On that page (as per link) sign up on the right hand side and that will give you access to the advice documents.
Many of us have been where you are at with this awful CHC stuff. I'm afraid it is just a case of holding your ground and being well informed.
I can point you at a lot more useful information, but this is probably enough for now.
Make sure you are informed and be at the assessment. Argue over the scoring if necessary. I can give you a link to their scoring sheet too if you like.
In our last assessment I argued about half of the scores point by point. We got it in the end. If I had stayed silent we would not have done. NHS guidelines encourage carers to be involved in the assessment process. So you will not be out of line.
Good luck and do come back if you need more info.
Best
Kevin
This sounds to me as though the CCG where he is now doesn't want to take responsibility for him! It all comes down to money sad to say.
I have to say the hospital sounds grim too if he has gone downhill in such a short time. He sounds very poorly and is definitely entitled to CHC funding!! Yes you are meant to be involved. So the people at the hospital are either total idiots or frankly lying! As I said it might be they don't want to spend NHS money from their budget if he is going to move back to where he was living in the area of another CCG? However he might not be able to go home if your Mum has just had an operation and she is probably struggling too?
Only you know what the next step is to be? Or rather what you want it to be. So if he's going back to the area he came from maybe he would get CHC quicker especially as he has already been assessed there? Or has he? You need to find out what exactly happened before he went to the Nursing Home. I assume you don't want him to go back there?
If he is going to a Nursing Home please please check them out! In person and online. Check the CQC reports for each home. You will be given a list of maybe four. If my experience is anything to go by you will be able to discount two if not three! Pick the one YOU want!
Ask if they have ever had CHC patients if the answer is yes then the CCG has GOT to allow him to go there. Contact Beacon if you haven't already and they will handle the funding aspect for you. You need to inspect the Nursing Homes if that is where he is going. If not contact The Hospice and ask them for advice? If it is your local Hospice they might feel happier about giving advice as they won't have to deal with anything else? Good luck. By the way has he got a social worker? Is so let her get her a*** into gear!! Don't take him home until you have things sorted for his benefit and your Mum's. I am so very sorry. Keep in touch with us all?
Marie x
I think you're right, Marie - it's likely down to money. There's no way he's going back in to the nursing home, as it was their neglect that caused his kidney failure and sepsis (I had to insist on an ambulance, I knew it was an emergency, and they were still faffing around with 111 and saying he'd had a panic attack ). So we really do just want him home. Mom's op was over a month ago now, and she's ok to carry on. We're all exhausted from long hours at the hospital every day (he wouldn't get enough to drink if we didn't spoon it in all day). Our local hospice have said they can't do anything unless I get a letter from the palliative care team at the hospital and apparently he doesn't qualify for that, despite very mixed messages from the medics - some say it's a miracle he survived, others say he's definitely close to the end, others say he's fine and not palliative. Then in the next breath they say we need to think about whether we treat the next infection or not! It's so confusing, no one sticks to their word, does what they say, or speaks plain English. It doesn't help that my mom is almost deaf and can't tell what's being said to her, so messages do get confused. I need to be there all the time, but can't. Gosh, what a mess. And as for our social worker - she's on holiday. And won't get involved as the hospital is out of area. I asked for a hospital social worker on the day he was admitted, but just got a few words with an occupational therapist, and that was my lot so it seems. Thanks so much for your kind words.
Sarah x
Oh, Sarah, having so recently been there with Chris, I know what a nightmare this is. Reading it all I think the big difference for us was their familiarity with PSP. Its a London hospital, where we see the neurologist and so all his care was PSP focussed. So we were lucky. But before I knew that I was quite determined he would have fast track whilst in hospital.. I didn't have to insist. It was automatic and so it should be for you.
Good luck. I can tell you have the bit between your teeth !!!
Jean x
Thank you Jean. Glad your experience was a better one x
I noticed in one of your replies you mentioned Shropshire, are you in Shrewsbury Hospital? We live in Telford.
I don't know if you have a neurologist from Shropshire already or from your local area but Mum is under Dr Newman who is knowledgeable about the conditions, sadly no one else is in Shropshire. I had to get PALS involved last year as I was get no where with Telford hospital and they acted quite quickly to get the director of nursing involved, maybe worth asking them to help you get this nightmare sorted.
Could your GP help with a letter to the hospice if the hospital won't help, do you have contact with the hospice before this?
Thinking of you xxx
Oh wow, I didn't know there was anyone else so close - dad is in Telford PRH. We live just across border in Staffs, close to Newport. I spoke to PALS at PRH yesterday and they said they don't get involved with anything to do with funding. So I shall try again this morning.
Yes, we've had hospice contact before - dad used to go to day therapies weekly before he went in to respite, but has been too ill to go since then. I was hoping they could do more, to be honest, as he's very weak and totally immobile, and the thought of caring for him at home is daunting, but really our only option. Thanks for your suggestions - it's now gone 9am and I can unleash myself on my list of phone calls. Wish me luck...I'm going in !!!
Was it Severn Hospice you are in contact with or one in Staffs?
What ward is he on?
I didn't know anyone else was close either so that is nice to know indeed.
Send a private message to me if you ever want to chat.
He used to go to Katharine House in Staffs, they were brilliant and we'd feel so much happier if he could go there for at least some of the time. I've not had any experience with Severn. Dad's on ward 7 at the moment, and I have to say, we've really struggled to get the staff to listen to us about PSP. If I hadn't experienced it, I wouldn't believe how bad the communication could be, and how little they know, or are even prepared to find out about it. It's been a real eye opener (and more than a little exhausting)!
Unfortunately no one in PRH seems to have a clue about PSP /CBD.
Ask to speak to the Parkinson's nurse Marie or Andy. They know about condition and can maybe help educate the ward for you. How long do you expect your Dad to be in for ? I guess that dependson them sorting out the assessment.
Id get back onto Pals again and say you want them to sort out who will do the chc or you get the head of hospital involved.
They don't get involved in funding, but they do get involved if referrals to the CHC team are not being made and he is being discharged without a proper care plan based on an proper assessment. That is basic sound and thus imperative practice.
Good luck, well done Kevin you are amazing xxxx
Hi sasmoc. What an absolute nightmare for you. The hospital sounds abysmal and with all these infections not very good at care or caring either.
Dont bring your dad home. He's not fit to be discharged without full care in place. Have you a local hospice or macmillan nurses anyplace. It was through them that ger was fast tracked with care starting in 2 days. Do try these because you're not going to manage the care by yourself now.
God bless and good luck in your fight for your dad's rights. Don't forget Beacon too. Great advice from them.
Marie
I'm going in for a meeting with the Discharge Liaison Officer at 3pm today..hopefully we'll get somewhere..
Well that went well! I'm feeling slightly stunned. DLO has said we've got fast track, and guaranteed full funding from this point on. She's just waiting for a letter from the consultant and he can come home. She's warned us we may not cope, but is fully supportive of us giving it a go. I could cry!!!!!! Thank you all for your help and kind words xx
Exactly what happened with me ! Brilliant - but I was so worn out afterwards.
love, Jean xx
Sarah thank goodness they are starting to move!! If you get CHC funding you can buy in extra help. They should be providing 4 visits a day anyway. If you want someone to stay at night the CHC funding will really help.
When you have time to breathe report the Nursing Home he was in before to the CQC! They need to go in there to see what on earth is going on. It might not help your Dad but at least it will help some other poor people? It sounds horrendous.
The hospital doesn't sound much better but at least they have got into gear now. If your Dad is going home you will need to contact social services and tell them or he will vanish off their radar too! Contact his GP too...just in case! Also the District Nurse and Community Matron. You need all the help there is. The hospital should do this but they sound pretty dire?
One day maybe the NHS and Social Services will work together but I am not holding my breath! So sadly you are going to have lots of telephone calls to make.
Has your Dad got a hospital bed at home? If not they will have to supply one asap as he really needs one.
Keep in contact as you will no doubt come across yet more problems.
Big hugs to you and your Mum.
Marie x
Hi Marie, yes he's got a hospital bed, and we had an airflow mattress delivered today, so we're good to go. I've lodged a formal complaint to the care home he was in and they're due to respond in the next week or so. Then I will go to the CQC as I firmly believe no one should suffer the same treatment. Again, it was due to the fact that they weren't fully familiar with PSP (despite claiming they were) and not listening to us about dad's needs. Staggering. Thanks so much for the list of calls I need to make - it's now on my whiteboard, in readiness for his discharge. I trust no one now! Lesson learned. Be a pain in the rear end until things get done! Going to look up night care options now x
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