Hi all, could I please ask some advice from those of you knowledgeable of the CHC process please?
We applied last November, and dad didn't even trigger an assessment. Since then, he's worsened considerably, so I'd like to apply again. I've just received through the post his SAP2 form from his neuro nurse. I thought this form would just tell me if he needed nursing care or residential care (we have to find two weeks care when mum has her operation) but the form is just a long description of his needs, with no 'conclusion' as such. At the moment, we're fully self funding and I asked for the form so that I could start approaching care homes for respite for these two weeks. But now I'm wondering how I might use the form for CHC application again. Do I approach the DNs who come out every fortnight? Or go back to the neuro nurse? Should I, at this stage, be getting written statements to support the application from all of his 'team' or do I wait and see if the checklist triggers an assessment? Last time he was assessed, we didn't even realise it was happening, the DN just sat on the sofa chatting and ticking off a form, then left, and didn't tell us anything. I found it in his notes when she'd gone. Really not sure what the 'process' should look like, so would be grateful for your words of wisdom. Thanks all x
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Hi, my experience was that all the health professionals told me that Keith wouldn't qualify for CHC, I sat through a two hour interview with them all and it was turned down!
Also a district nurse came to see us and like you've said just ticked a few boxes, she didn't understand the needs of a patient with PSP!
I didn't give in though as my understanding of it was that Keith definitely should have qualified! In the end I went straight to his doctor who sent his DN to see us and within 24 hours they issued fast track CHC!
Don't let them fob you off with a load of stupid excuses, they know so little about this disease, if the shoe was on the other foot it would be a different outcome!
Also they don't want to spend their budgets and are trying to save money all the time!
Please don't give in, you have to push and fight for CHC every step of the way! Good luck, I hope you manage to get it!
Is the hospice involved? If so, call them and ask, otherwise get the DN back in asap plus ask the neuro team if they can help....speak to the gp too!! Call every medical person you can think of to get the ball rolling and to get chc in place! As Pat said don't let them fob you off!!!! Fight, fight, fight!! I expect dear Kevin will answer this too! In the meantime write a report about your Dad, bullet points, ie
The only people who are able to do the Continuing Healthcare Assessment are the CHC team.
As another poster said. Do not trust anyone on CHC suitability, but them. The regulations are complex and and other opinions are not valid. For example: We have a very experienced Community Hospice Nurse who was surprised we had CHC because, people are only eligible in the last few weeks of life. She was so very incorrect!
Everyone is entitled to a CHC Assessment. Telephone your local CHC team and request one. They will come out and do a quick "Checklist" if you pass that you go onto a full assessment - the DST.
Otherwise ask your GP to telephone them. And, remember your GP is unlikely to know the regulations or process too. (I have actually had CHC people who don't know the regulations - best forget that though!).
This is not me being anti - NHS - I was a clinician for many years - it is a complex area little understood properly outwith the Clinical Commissioning Group - They commission the CHC team to process this.
If you click on this link and go to the right of the page - then register and then download the tool kit. Beacon are a specialist NHS Arms length CHC Advocacy and advice service.
You need to read their Guide to Continuing Healthcare Assessment 2 file. The legal background file is useful too. Just read up to and including "Checklist" that is the first hurdle.
However make that request for CHC assessment first thing on Monday. They can be slow to respond.
Do come back if you need any clarification.
Best
Kevin
PS - You need to be informed to play a full role in the assessment - forget NHS and experts and waiting for 'their' decisions. This is one where yo need to make the strongest possible case. Anomalous decisions are common.
PPS - Sorry this was hammered out at the run - caring to do... I'll bet you know all about that one.
I found this whole process difficult, we have CHC now but it is very muddled and difficult.
However, you need to grit your teeth, summon up all of your energy and speak to everyone involved in your husbands care.
Ask your GP, DN, Neuro physio, everyone involved in his care plans to provide the evidence of his care needs.
My experience is that everything is on slow time, the slower they go the more they save from their budgets, so you have to become a lioness and roar at them. in an assertive and 'desperately in need of help' way.
We have the full assessment this Thursday and I am feeling jittery, it was the hospice that started the process. I rang the SALT who is very supportive and is coming the day before to give advise, the hospice are meeting with me on Tuesday when Ben goes to day centre there and I called the Parkinson's nurse who has offered to sit in with us on he day, bless her. I have also spoken to a solicitor and will use his services if we are refused, he specialises in CHC funding and sent me this link to read.
This is part of the email he sent-------
'Obtaining CHC for Ben should be a no brainer. I thought it was just my clients who were being denied CHC ( and I was beginning to get worried) and then I came across this report last week. It’s worth a read.
Today I went on a legal practitioners course and swapped “war stories”. Other practitioners are also acting for clients who are entitled to CHC being denied it.
If Ben is denied CHC or you feel the process is not going as you expect, I do have the legal tools to force the CCG to act lawfully.'
I you want his number please message me. I think it would be money well spent if he or any specialist solicitor can fight your corner and make sure they act lawfully.
Katie it is not the council who awards CHC funding. It is the local CCG who fund the NHS. You do however need a good social worker who will come from the council. All of these people that you have been in contact with will have reports on your husband...Or they should have! Try to get the social worker or the Community Matron to get copies of their reports to be submitted as evidence. My husband got it the first time but we had terrible trouble getting them to actually trigger it! They were trying to save money it's as harsh as that. By the time they actually contacted us I had only a month left with my husband before he was admitted to hospital with aspiration pneumonia. So I spent precious time going to look at these Nursing Homes they had funded him for. None of them were suitable actually. The one I found myself they refused to fund and I was told I could pay for it myself if I wanted him to go there by a thoroughly nasty woman on the phone!! I will make a formal complaint about her but still feel a bit fragile after my husband's death!
Don't think I will sleep well this week, dreading the inquisition. Thanks for the info and hope I don't get treated the way you and many others seem to but not banking on that. I don't blame you making a formal complaint when you feel strong enough to do so, shouldn't be like this should it Marie?
Kate no it certainly should not be like this! It is so cruel it takes my breath away! Now what they are trying to do is make people pay for Social Care at home! What do you bet this will make it harder to get CHC? People will be told (a) they don't qualify and (b) they can be cared for at home at a price of course! They won't say that last bit of course but it's true?
Kate I wasn't grilled by them. Can't fault the Assessment to be honest. I took my son along with me so I had a witness! It was what happened after that was a disgrace. Waiting for ages to see if he had got it.
When I told him I had good news and he had got it, he had actually given up on life. I can still see the look on his face. He didn't say it was too late but he knew it was. So did I in honesty. I thought he might have a couple of months but it turned out to be only weeks 3 of them spent in hospital dying! Animals are treated better than people are. Whatever happened to being a civilised society?
Lots of luck and don't worry. If they refuse just appeal at once! I wish I hadn't been so polite and patient! Go for it Kate! Remember you are stronger than the jobsworths! You have all of us behind you too.
Thanks Marie, just hope I don't say something out of line that will hinder the process. It says in the link the solicitor sent that they should respond within 28 days and I know you can have it backdated. Trouble is you have to find all of this information out yourself, they would never tell you your rights. I feel for you Marie that yours was granted when it was all too late. They should be held to account, I don't know how they live with themselves. Wonder how they would feel if they were on the receiving end!
It is well worth getting the Beacon Navigation tool kit . Telephone them on 03455480300 and they will send you a package , they will also provide a free 1hour telephone consultation .
All the the different areas seem to have different approaches to how they go about assessments , but usually it is your district nurse or community Matron coupled with your occupational therapist who will do the pre assessment after that the CHC may send out their own nurse to complete a full assessment .
The key ares to concentrate on are Nature which relates to an individuals needs physical and mental . Intensity which is about the severity and support needed . Complexity which relates to the interactions between the various symptoms and Unpredictability which is supposed to relate to the fluctuations in needs which create special challenges .
Really dig up all you can and lay it on the line how difficult it is to nurse someone with PSP. Also emphasise the progressive nature of the illness and just how quickly things can move on . There is paragraph under section 38 of the NHS own guidelines that states quite clearly that deterioration should be taken into account when considering eligibility including circumstances where deterioration might reasonably be regarded as likely in the near future . They will try to ignore that one and say the assessment is only a snapshot of how things are on the day .Wrong they have to look at how things are likely to progress . When our appeal failed and I went for an independent review and when said I was quoting that paragraph there was a hasty backtracking and they have decided we were entitled to CHC funding back dating to our original assessment of of over a year ago .
So be prepared to do battle and just because they are health care professionals don't assume they know the rules because they don't ; as previous replies have stated money and saving it is at the heart of this and the whole system is designed to fob you off . Be strong , persevere , and don't take no for an answer ; and good luck .
Thanks so much for that GP, I shall be reading and rereading your advice before Thursday. Will make sure I have a list of relevant questions/points ready to hand. Thanks again.
THANK YOU ALL SO MUCH!!! This group is just fabulous. I'm feeling slightly overwhelmed right now about the fight ahead. I work, plus home educate my two kids, plus help mom and dad and I have Grave's disease so energy is a precious and scarce resource - but I WILL find the energy for this. What breaks my heart is the thought of those people who don't have family to do things for them on their behalf, and who don't have resources such as this group to fall back on. I've got an afternoon's reading ahead of me - wish me luck, I'm going in!!! Can't thank you all enough for being so kind to reply quickly and so thoroughly. You're all wonderful. Sarah x
Sarah you are doing an amazing job. It would be made much easier if you had CHC funding though? So good luck to you. Just don't let them run over you because they will try to! They hold the cards and they know it. However knowledge is power? So I hope you are reading?
People who have nobody to fight their corner are just lost in the system! It's called making savings! Makes me mad! So read up make notes and good luck.
Hi! Not sure if we've just been lucky or just have a good team working with us but Stephen got CHC on the first time of asking! I didn't do any of the work really - our social worker arranged for all the people involved in his care to come to our house and they all got together and filled in the 12 areas and how he fared in each one. Some areas didn't apply but there were enough medium or high risk to achieve the CHC. When they took this to panel apparently the people on the panel didn't know anything about CBD and couldn't disagree with the case and therefore awarded it to him! The team we have involved are the neuro rehab team including SALT, OT, dietitian and physio plus social workers and care staff.Our consultant at Salford Royal also submitted reports and so did our GP. We were told at the hospital that he should be entitled to CHC and if he didn't get it, to appeal and they would continue to fight our corner! I care for Stephen at home 3 days a week and work 4 days when he has care coming in and out. I don't have to pay for this now. We are in Derbyshire but our health authority is Tameside and Glossop so both have been involved!
One thing you need is a good social worker, they can put so much into reports direct to the chic. Also keep a care diary of your own, detail things like mood swings, diet, appetite, tiredness, and capability, ie could switch the light on last week, this week it's harder, as seems weaker. This is what they call evidence to support your claim. Make sure you use everyone available to you, speech therapists, occult. therapists etc. Their reports will help you as well.
Good luck, if I can be of any more help, just ask and I will try
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