Can anyone tell me what are the guidelines for the CHC procedure ? Our Community Matron says it was not expected that I or a family representative should have been invited to the panel meeting who met to discuss the DST stage, or that we could show any `evidence` of our own. In addition, I am told that CHC is ALWAYS for full funding, no partial funding at all.
All this is contrary to the information I have read on this forum. Where do I find the national guidelines ?
The community nurse said that if there was an appeal, the nurse and social worker do it, and I think there is either 50% our 100% percent funding, that is what I thought, they took copies of relevant letters, and our nurse took papers we had on PSP and read them, and she went on our site, she was lovely and social worker, not sure if every council is different, because social worker said it was different in the last borough he worked, sorry but can't be more help. Hope you are feeling better, could you phone up nurse our social worker? Sending you a big hug Yvonne xxxxx
Thanks Yvonne, I think it is different in each district but I thought that was the purpose of National Guidelines - to standardise everything. Each person I speak to has a different answer and that can`t be right . I wish there was a standard that we could all apply and that each procedure (i.e. appeals or complaints etc) would be the same everywhere and for everyone.
x
Google NHS Continuing Healthcare....Your Guide to Care and Support.
The panel only look at paper, never the person requiring CHC or carers. In the guide it states, " in all cases the overall need and interactions between needs will be taken into account, together with evidence from risk assessments.........." And " The assessment should take into account your views and the views of any carers you have".
Before Colin's papers went to Panel, we were sent the form to read. I disagreed with the scores awarded in one section and wrote down details if incidents and accidents. The score went from the lowest to the highest. When I sent it back I had a phone call to say the scores had been altered. I was also told the panel would see my additional information but I don't know if they did.
CHC is for full funding. You either receive CHC or don't. There is no part payment.
Before Colin was assessed I read the CHC guide for professionals and realised obtaining CHC was very similar to a child getting a statement of additional educational needs. A lot of my time was spent applying for statements after getting reports from educational professionals, gathering evidence, assessing etc. all the information also went to Panel. It was very frustrating when children I knew very well, who had complex needs and required extra help were turned down by a group of people who had never met the child. Although I tried, I never managed to find out who these anonymous members of the Panel were. After a while I learnt what got it and what didn't. We are in Kent. The guidlines appear to be for all districts.
I hope you find the guidelines. There are several sites.
X
Thank you NannaB, exactly what I needed to know. I have written to the panel today stating that I have not had the chance to present my own evidence and asking what exactly are the points that P does not qualify on.
I will follow up your tip for Googling CHC. I do know that the panel did not ask for any recommendations from the GP, Day care or Home care or the Homeline Service (who come and pick P off the floor on a regular basis, day and night !) I have records of falls etc etc. It seems that the Matron and OT should have included these with the application, perhaps it was naivety on their part as I am not sure how many CHC s they have done before.
Ever onward !
X
Hi NanBabs I just wanted to let you know I'm thinking of you and really hoping you get some good news....hang in there as best you can and please don't ever forget there are many super people here to support you.NannaB's comments reflect our experience of CHC here in the North East.Though you are restricted from having direct contact with the panel we also questioned some of the scores given in the initial assessment stages particularly with regards mobility and swallowing.We listed every single issue in the last twelve months and good lord,bless her it was a page long....the appeal board then granted the funding.
The good news is can be reassessed and is done so even for those who have funding(about every three months)to ascertain the need.I believe those making the decisions have little or no understanding of the true complexity of PSP and I do understand that each borough follows slightly different guidelines(shouldn't be the case really)however,it is influenced by budgets and politics but forgive me this is no time for ranting!
Stay strong as best you can,keep on fighting...any changes communicate them...I very much hope you will share positive news with us all very soon.Take carex
Thank you CJR99, it seems that trying to claim something you are entitled to is a minefield deliberately set to trap you.
Just when you need help the most, that is when all obstacles are put in the way.
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This is the info on the NHS Choices website nhs.uk/conditions/social-ca... Cut nd paste it into your browser (top left of your page) but beware the word 'Free as that only applies if you can climb over hurdles and read documents written by health professionals in language designed to confuse the patient/carer.
After reading all the information available I have `brain fog`. Maybe I am just tired (up 4 times again last night and bedroom carpet to shampoo again this morning) but I feel I am going round in circles.
Why oh why can`t they make these things easy to understand ?
Hi CHC is for full care no percentage it is either you get it or you get nothing. Also the national guidelines are different for each nation in UK. The problem is the differences within England each trust has own interpretation of the guideline. Read the NHS website. Ask to see the notes going to panel so you can try and amend any mistaken opinion, ensure GP, OT, Consultant letters are included. Most important is if they turn you down get the appeal in ASAP but get help from PSPA and CAB for help with tribunals. They will also help to get the papers presented to the panel released to you.
Good luck Tim
Hi Tim, I have sent a letter asking for notes of the meeting and asking for the specific points that they felt P was not eligible on. I also said that I have plenty of evidence but was not asked to supply it.
As soon as I get a response to my letter, I will send in an appeal.
NanBabs
The PSPA information sheet 'NHS Continuing Healthcare Funding' may be of help.
Thank you, I have downloaded and read the document.
Best of luck with the appeal be good if someone on those panels had some idea of what you are facing and at least have the decency to give feedback without having to ask. Bet they font send a satisfaction survey out for you to complete. Why do they not let you have a voice and present evidence, I expect they feel they are best to have emotional detachment from the case. Great help! I am taking note of all of these comments for when our time comes. Xx
Thanks Katiebow, it is good to feel that someone is on your side ! A friend who is an ex-nurse and has also worked for the local hospice has just called in and was stunned to hear that we had been turned down for CHC. She, like you, finds it hard to believe that we were not able to present our own evidence either documentary or personal. She said to appeal as soon as possible.
Each case and each local authority is different so hopefully you will not have the same problem.
x
We have being going through the CHC process since the start of the year.
We have had one application turned down but our community matron expected that, I think she was setting a baseline for my wifes condition.
We are now re submitting.
The Community Matron is doing all of the co-ordination, with OT, Physio External Carers etc.
She is collating all of the reports and submitting during the next week.
I have been through the scores and advised some changes, which she agreed with.
The most important item that she insisted upon was me keeping a day diary of ALL incidents as this would be added as further evidence. This was started back in February.
A package of care has been discussed and will form a part of the submission.
I live in Dorset and I think we are fortunate as the CHC process was tested here.
Also she has a good knowledge of PSP.
Hope you achieve your goals.....
Thanks so much for your information, it just feels that are being deliberately obtuse to save money. That`s probably not fair to the panel, as they have never met us, but that`s how it feels.
I will persist.
Dear NanBabs
I’m sorry I cannot offer anything useful but having looked at the NHS site relating to CHC guidance, I worry that anyone needing that amount of guidance should be assessing anything. I’m not even sure they should cross a road without an adult in attendance.
Hidden amongst the 140 pages of verbiage was the following: -
“There is no substitute for a careful and detailed assessment of the needs of the individual whose eligibility is in question”.
What more needs to be said? Once PSP has been diagnosed there is a progression that is fairly well understood, although it’s rate of progress may vary. Endless assessments serve no purpose, except to provide work for assessors, and divert financial resources away from providing the much needed assistance to carers.
The document is a wonderful example of stating the blindingly obvious in that it requires assessments to be made by those with knowledge of the disease. That alone, if my experience and that of many contributors to this site has any validity, would exclude the majority of the medical profession below consultant neurologist level.
Well meaning as I’m sure those involved with providing CHC are, they have in my opinion lost the plot. I imagine the intention is to efficiently ‘manage’ the provision of limited resources. Unfortunately the result is primarily an exercise in ‘administration’ that could absorb a major slice of the resource available.
Prior to the current revision (appropriately effective from 1st April 2013) an assessor was required to take into account any likely deterioration in the condition over the three months following the date of the assessment. I failed to find this in the current guidance but it seems to have been replaced by a requirement to review the situation on a three monthly basis, which is not very helpful for a disease whose progression isn’t linear, but doubtless it is convenient for administrative purposes. As carers we know that it is a 24/7 activity whereas the NHS, particularly the GP service, doesn’t acknowledge this inconvenient aspect of illness. Regrettably this attitude seems to be reflected in the guidance to CHC provision in that the system takes precedence over the patient.
Sorry, unhelpful rant over.
Not unhelpful at all ! You have summed up exactly what the problem is i.e. too much red tape and admin, too little practical help and common sense.
I am sure the root of it all is cost and while we are all aware that these days there are too many good causes and not enough cash to finance them all, it seems that all the guidelines do is confuse the `professionals` and us ordinary folk who after working for a lifetime now need a little help. I think obfuscation is a good old fashioned word to describe their tactics !
Thanks for taking the time to reply.
Hello
We attended each meeting for CHC and I had my own notes to contribute to the discussion.
Contact this voluntary group
Megan Ahern | Information Officer
Beacon
Oxford House | 1600 John Smith Drive | Oxford | OX4 2JY |
Tel number 0345 548 0300
There website offer lots of information which helped me.
Thank you monkeylaura (love the name !), I will contact them straight away and let you know how I get on.
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Hi, just happened upon this thread so not sure if anyone has already mentioned it but have you contacted PALS (Patient Advice and Liaison Service)? When my mum was in hospital it became clear that she would not be able to return home and would need nursing care. When I first asked about CHC I was told that she wouldn't qualify because she wasn't dying! I persevered and because the hospital staff were so ignorant of the PSP condition I contacted PALS and they were a fantastic support. We demanded a case conference with all the necessary people, nutritionist and physiotherapist and then had to wait for the panel to meet. Suffice to say that mum was granted CHC and did get admitted to a nursing home, sadly passing away just 11 days later. Not many people seem to know about PALS but I would certainly recommend them because they act as an intermediary between you and the hospital at a time when you want to spend all your time caring for your relative xx
Thank you for replying carolson8, I did wonder if I should contact PALS, it said on the CHC letter that I had 6 months to appeal and that I could contact PALS for further information, so with your advice I will ring them tomorrow.
Sorry to hear about your mum but I can`t understand why people in `the caring profession` make it so difficult to claim what is yours especially at the most traumatic times.
CHC
