Its that time of the season when I get a strong primaeval urge to post about CHC
The full on CHC National Framework is a long read. It's still useful as a way of getting copies of the assessment tools so that you can do your own assessment in advance and argue the decisions on every score you disagree with as the assessment takes place. The framework itself says that those concerned (carers) should play the fullest possible role in the assessment. The assessment tool is easy to use and the Framework explains how to use it. The Checklist is in there too and that is stage one before a DST. Unless Fast Track is being done in which there may not be a Checklist and certainly not a DST.
It is so helpful to fill in an assessment yourself, over some time if you like, before the DST takes place. There are boxes where you can write you evidence and it means you know precisely what to say to the assessor on the day. That way you will not forget crucial info.
Maybe read my reply to Kevin. Very best of luck with the assessment. Tell it as it is on the worse days/nights. If they ask you how many times your mother has fallen, tell them they have asked the wrong question. I did and then said they should ask how many times would she have fallen if someone hadn’t saved her from falling.
They love written evidence ftom other professionals! If you can contact every one involved, SALT team, GP, DN, OT, CONS,Hospice even use documentation from carers if visiting and supportive of illustrating high scores in the domains. They should all quickly give you written reports, if the assessors want to score low argue, they should be looking not at what is working to keep the person safe but what would happen if that was not in place.
PSP association do a very good supportive document for you to give to assessors or you can use for yourself.
I did just that - got letters from consultants, GP, SALT & Parkinsons nurse but the CHC team picked out the bits they wanted and ignored the rest ! For example the SALT (who sees P rarely these days) got him to respond to a couple of questions, so her `evidence` showed that he was able to show cognition, therefore he was `downgraded` from SEVERE to HIGH !! I could give many more examples but I`m sure you get the gist.
However they have NOT deterred me from going on with the next appeal.
I rang my dad's neurologist to tell her myself that my dad had died. I told her that he'd been granted chc back in November,(she wasn't due to see him until next week so she didn't know what had happened back then). Her response was 'And so he should have!' & was really pleased to hear this. People I know who have looked after very ill parents just have no idea that chc exists. If it wasn't for info on here & a very good doctor that informed me of it I too would have had no idea. I tell everyone about it. It's such a fight. It really shouldn't be should it?
First: They pay a nursing home or care agency directly. They will find the home or the agency too. They should be open to requests of a change in the Care service provider or home as well.
The second option is that you request a Personal Budget (Also called Direct Payments). In this scenario they pay you directly. They will also help you find the home or care agency as well. With this option they agree a care plan. That care plan can be quite wide and vague. It could for example include social activities to improve quality of life. A break away is a social activity. They agree a direct payment figure and you can spend that where you want within the care plan. All you need to do is open a bank account used only for the Direct Payments and keep the receipts to show you are spending the money within the care plan. You have a lot of flexibility with this. Id the persons needs increase you ask them to come back and re-asses need, risk and care plan and they should increase the funding appropriately.
You have a legal right to being paid by Direct Payment should you choose.
The one thing you cannot do easily is pay a carer, or neighbour who is not registered as a company. Legally you are then employing them and must do PAYE and Tax. However there is support to help you do that. Family members are a grey area.
Here is the local authority stance on employing family members:
With CHC it is often forbidden to employ a close family member to provide care. I'm unsure as to whether this is universal across Health Trusts.
One thing I would say about Direct Payments. We live in a bit of a Care Agency desert. When I could not find a Care Agency to take us on the CCG succeeded. They have paymaster clout.
Think I will be chasing it today as it’s getting really tough now. I’m starting to resent Mum and that is the last thing I want to do. A friend of a friend is a carer so I asked her to come and do a night for me. She charged 10 per hour which I think is brilliant as Mum got on with her and agencies charge £18 (she was obviously cash in hand) the nurse who did the assessment has continuously told me that they won’t cover nights yet this is when support is desperately needed. She is really against it but luckily I do have the social worker on side. I was hoping to get a direct payment as will get more for my money. Would you be able to pay someone who is self employed? I think the idea of a separate account is good as you can prove what the money is spent on. If I did get this funding (a big if) who would decide the amount and how would this be done.
If you google 'Direct Payment support scheme *name of your county* You will likely find there is a scheme to help you with all of the direct payment set up paper work. They do not do the daily pay and tax stuff though they will show you how.
Cash payments won't be possible as everything is checked by most CCGs - sorry. It might be easier if your friend became a 'sole trader'.
A separate account is a requirement. The CCG will likely have an agency you submit receipts and bank statements to.
The situation you are in with your friend is so common.
As for nights: Different Health Trusts seem to have different arrangements. I have heard of cases where that would be provided by District Nurses or McMillan, or community Hospice nurses. These folk would likely visit as required. However in other cases CHC covers that.
However CHC is a needs based provision and strictly so. So if night care is needed they cannot refuse. They are not allowed to ignore a need.
As part of the whole CHC process the following take place:
Risk assessment which gives the risks that need to be managed for safe care.
Needs Assessment: Which identifies those needs which need to be addressed. (Often done by Soc. Serv.)
Clinical needs: (Which may well be part of the needs assessment).
These are precipitated into a Care Plan.
The CHC funding rate is based on costing the Care Plan.
Should there be a deterioration and an increase in needs one contacts the CCG and asks for a review.
Separately: Do get physiotherapy and an Occupational Therapist involved. Ask the GP to make a referral. Exercise and working on mobility is important to maintain function for as long as possible. OT's are able to assess what is needed and to put min rails and lend equipment including wheelchairs and even stair lifts.
I hope this is helpful.
Do ask to be assessed - even if you don't get it there is appeal and as things deteriorate you will be better prepared for the next request.
Thanks Kevin. I am currently waiting for a further assessment as my first was deferred. I really don’t mind how I get the funding as long as I get it. I actually went back to work on a phase return last week but was a big mistake, dad was taken ill Wednesday afternoon and in process of phoning ambulance Mum decided to take herself to the toilet and fell with her walker. She had swollen cheekbone, bruised and swollen eye and a nasty dislocated finger. We ended up with two ambulances and both in A&E Mum was allowed home but dad has stayed in. This has raised mums anxiety (because she feels on her own, not because of dad being ill 😂
Needless to say I am back on the sick again. I always said that when they moved in with me that I did not want to be their carer, I wanted to be their daughter. Little did I know how expensive carers would be how quick my mum would deteriorate. Both Mum and dad bury they’re heads and don’t understand the reality of what is happening, Mum thought that getting a carer in on Tuesday was a complete waste of money. I needed to for my sanity.
I really am banking on getting the funding otherwise I may well lose my sanity.
You are so up against it. Do look after yourself. It sounds like you need care in for them both?
I gave up work to care as I found that even with carers the are large parts of the day where care is still needed as well as risk prevention supervision. It was full on even with three care visits a day.
Have you contacted Social Services about whether they have made a decision as to whether or not the care needed is outwith their legal limit. Do remember that clients have full rights to aces their files excepting third party information. You just need your Dad to sign a letter appointing you as his representative. So they have no call not to write to you explaining their decision and evidencing it too. Many a person has got CHC by getting the Social Services to say it was beyond their legal limit.
Given the urgency of your situation have you considered asking the PSP Assoc. to telephone the CCG asking them to make the decision as a matter of urgency? They might be willing to do this. Or, ask the GP to do the same?
You do have a fallback with Social Services means tested Social Care. They only means test the person for whom the care is needed and they exclude the family home. However they may include your parents home if they are living permanently with you - its a grey area. I woudn't go down that route just yet as if Soc. Serv. provide a service they are demonstrating that the care is within their legal limit.
No your not ranting, I've been where you are at now - it drove me crazy - I would wake in the night and worry.
Just keep coming back here if you have any Q's - I will do my best to help.
They will pay for nights it simply comes out of your overall package . Get your district nurse to apply to Marie Curie for you , depending on the severity that will do as many as three nights a week and no charge- they are brilliant to have on board .
We were very lucky. In Northamptonshire and successful first time without difficulty. In December we moved to a bungalow in Leicestershire and for over a month before I tried to get the CHC transferred to the new county. Northants kept insisting we had to approach Leics and Leics said they needed notifying by Northants.
By chance Jon was admitted to hospital the day before the move and, amidst moving and visiting Jon, I refused to have him back home until the funding was transferred. We were moving on the Friday and Northants were ceasing from then. After being "difficult" I was told to take him home because Northants had agreed to continue care. Fortunately I asked until when and was told until Tuesday !
It was only resolved when Jon's sister stepped in and spoke to Northants CHC. She was armed with the national framework open on her laptop and directed the spokesperson to the relevant page, chapter and paragraph where he read that they could not relinquish responsibility until it had been accepted by the new county. He was clearly surprised and it was actioned the same day. It seems that many staff working with CHC do not actually know the rules.
Jon came home to the new bungalow the day after I moved in.
My mum had an assessment in June last year, I’m still waiting for a decision. Due to my not empty threats of taking my situation to social media and involving my MP I managed to get her moved in September last year from a residential home that couldn’t meet her needs into a nursing home and social services to pay in full for her fees until funding was secured. I’ve just had a letter from them asking me when I’m selling her house and offering to pay her fees until it’s sold,(her property is a whole separate nightmare that no solicitor in the land seems to be able to give me an answer to, it’s a shared ownership) and that she needs to self fund (a portion based on savings and income, both of which are minimal) until the funding dispute is resolved ( passed from health to brain injury and back again). Back to the MP again this afternoon.. it never ends.
She is in a Nursing Home. Get a Continuing Health Care assessment a.s.a.p. Get the G.P. to do your referral. The clock starts from when they receive the referral. So if you are successful they back date the money to then. The funding is not means tested.
We have just received confirmation that my mother will received CHC funding and be able to stay in the nursing home of her choice.
I read all your notes and suggestions, made copious notes, obtaining as much support documentation from our our consultant, consultant nurses, GP, physio and SALT as you suggested.
Please do not under estimate how much all your efforts to help everyone achieve CHC are appreciated.
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