Continuing Health Care - Preparing to fight PCT's decision

monkeyspanner

atoneswitsend wrote: »

Thank you monkeyspanner. Yes we are in England.
I realise this is going to be a long and difficult road as evident from yours and others work in the past.
I have downloaded the guidelines for the checklist and CHC assessment. My desk is becoming a reminder of my late office desk, in and out baskets, pending and priority lists.
AND I RETIRED 15 YEARS AGO!
To get to grips with it all is difficult. I have the distinct view that the "assessors" already know what qualifies for the next stage so deliberately work to arrive at a level just below.
Just call me cynical
My plan is to insist that I or another family member is present at the assessment which I assume will be carried out by the DN. Also to request to see the hospital records for my SIL. I am not sure what this will tell me. Will it be detailed to show what medication/treatment was given on any particular day?
I am interested to know what state of health my SIL was in at the time of the completion of the checklist. I am convinced that she did not or would not have fully understood what was happening or what it meant. Afterall even I find it all difficult to fully comprehend.
I have studied the DST. This I feel is open to much "personal" interpretation and as such can be completed to achieve a particular score or result rather than to the benefit of the patient.
If we disagree with the scores and this is registered what use is this? As a lay person surely the medical "experts" views will outway ours?
It is a relief to be able to talk to others who know what I am experiencing. It has been lonely to date and I feel I am neglecting the precious time we may have with my SIL.
Thank you for reading my ramblings

Perhaps I am also cynical due to our experience but I believe in many PCT areas there is a deliberate policy of denying virtually all assessments. As a result only the most persistent and well informed advocates will achieve CHC for their relative. I know for instance in my MIL's PCT there was a 7 figure reserve in the PCT accounts against successful legal challenges of CHC assessments.

Do not be surprised if they spring a short notice assessment on you. Their aim will be to downplay medical conditions and one thing to realise here is that a well managed need should still be assessed as though it were not being treated according to the national framework. It is important to register dissent if you attend because if you don't they will take it as your tacit agreement of their judgement. In many ways their judgement is less valid because they are not seeing the ups and downs of medical needs but merely a snapshot. If you believe your SIL is having a better day than usual, it is better that you say so. Also youmay wish to ask the carers to make notes of any aspects that would help your SIL's case.

Make sure you know what background the assessors have, it should ideally be medically lead but this is not always the case. In most case the assessment will be carried out by a nurse assessor who should have the appropriate CHC training but from what I have seen may not be fully aware of the national framework. There may also be social services representation but as your SIL is self funding this is less likely as they tend only to get involved if they may have to pay.

The biggest problem as you have identified is that the DST is open to interpretation. I addition it does not support decisions because the number of grades required for a successful award is not defined. You can appeal the assessment decision to an IRP (independant review panel) this is set up by the PCT but should not involve anyone involved in the original assessment or decision making process.

Yes I do agree that there is a danger that your attention is diverted away from your relative just when they need you most.

Katykat

As Monkeyspanner says, " a managed need is still a need", so your SIL should be assessed as if her needs were not being managed. This can be difficult, but you may have an edge here. For instance- in the behaviour domain ( mainly in dementia patients) their aggressive, confused behaviour is managed with drugs ( sometimes referred to as a "chemical cosh") However, when the assessors comein they see a quiet, co-operative patient who takes all their medication without a fuss, hence they score low in the behaviour category. But they are only compliant because they are taking drugs to make them so. So ideally, any medication should be stopped prior to the assessment. Now, can you imagine the outcome of this in a nursing home or hospital. It most probably wouldn't be allowed to happen, but being nursed at home it may be easier. However, it shouldn't be neccessary. What really should happen is that you explain to the assessor ( who, by the way, has probably never even met your relative) how that particular category would be if she wasn't taking the medication and so should be marked accordingly. Sadly though, this rarely happens.
Also, it really shouldn't be the district nurse who assesses her, its more likely to be a CC assessor from the PCT, who may or may not be medically trained. District nurses are not trained to assess for this. In fact, most DN's have probably never even heard of continuing care. I was a Practice Nurse and I'd never heard about it. I merrily went on my way not thinking about it, until it happened to my relative.
Another thing to mention here. Dont be surprised if you receive some quite scathing remarks, both from PCT's and unfortunately even from some posters on this forum - although not neccesarily from this CC thread. There is an element of suspicision that you may only be fighting this to avoid spending any " inheritance". I have had some of this unfortunately and it does hurt. You have to be strong and stick to the cause that you are only fighting for the most basic human right- to be cared for when you are sick, or vulnerable.

atoneswitsend

Thank you Katykat both for your advice and warning. Inheritance has nothing to do with me. My only concern is to do what is best for my SIL and ensure she has the care she derserves.
As a christian woman who in her life has worked hard for her local church and nursing home she desreves better from the local PCT/NHS.
Thank you for your concern

monkeyspanner

The CHC funding system arises from the cradle to grave medical care principal of the NHS as tested in UK courts. Essentially in the past there would have been no expectation that relatives or care/nursing homes could have cared for such seriously ill patients. However, all that has been swept aside and the NHS now regularly discharge very ill patients who are in their opinion stable but still need nursing/medical care. The CHC system is supposed to deal with that situation but it fails miserably.

I have stated in the past that I believe the all or nothing nature of the CHC system sets up a conflict between the NHS and patients and that perhaps it would be better to accept that nursing costs are paid by the NHS and domestic costs are paid either by the patient or social services. However, the present system is all or nothing and for the NHS to systematically avoid providing support and bully patients and their representatives is not acceptable.

Many of the NHS and social services staff involved in this area are badly trained and are themselves subject to pressure. They will of course deny this if asked but no budget is completely open ended and of course the NHS managers have to be well paid!

I hope you will find 100% support on this thread, and a sympathetic response to your queries.

greenflamingo_2

Hi Atoneswitsend
Sounds just like our relative

- discharged from hospital and we were told he should go into a nursing home as he wasnt fit to be at home

- assessment done without our knowledge and we didnt even know one had been done until we found this BB and began to fight the non funding decision

- two years later we have appealled, been to an Independent Review Panel where funding was refused again, but PCT told to reassess as relative had developed further problems, and still waiting for our PCT to reassess our relative (18 months after IRP decision). Hasnt even had an annual review!

- been fobbed off by Andrew Lansley Health Minister and told to contact PALs (waste of time). Have lodged our own complaint via the CEO of our PCT and now waiting for a response.

- Next stop will be Ombudsman (probably another 2 or 3 years), then Judicial Review

All u can do is make a nuisance of yourself and make it very clear you wont be giving up and you are going to cause them an awful lot of work, time and costs

Good luck

atoneswitsend

Hi All. Well you warned me.
In response to the letter I received from the NHS last week I rang them to discuss and acquaint them with my requirements. When I started I was under the impression the next step was a DST assessment. Well how silly of me.
Although they referred to an assessment they want to do another checklist!
After a lengthy discussion the bell rang for the end of round one to go away and consider our respective positions.
My intention is to write and insist that as a checklist has already been carried out the next step forward is a DST assessment for full CHC.
And I thought we had progressed.

monkeyspanner

Sorry to hear the game playing has started.

Here is the relevant section of the National Framework. The PCT should have complied with this proceedure.

66. [FONT=AGaramond,AGaramond]Whatever the outcome of the Checklist – whether or not a referral for a full assessment for NHS continuing healthcare eligibility is considered necessary [/FONT]
[FONT=AGaramond,AGaramond]– the decision (including the reasons why the decision was reached) should be communicated clearly and in writing to the individual and (where appropriate) their representative, as soon as is reasonably practicable. Where the outcome is not to proceed to full assessment of eligibility, the written decision should also contain details of the individual’s right to ask the PCT to reconsider the decision. The PCT should give such requests due consideration, taking account of all the information available, including additional information from the individual or carer. A clear and written response should be given to the individual and (where appropriate) their representative, as soon as is reasonably practicable. The response should also give details of the individual’s rights under the NHS complaints procedure.14[/FONT]

See also sections 60 to 65 on page 20 of the National Framework which detail the checklist proceedures.

fedupalready_2

Dear all

I hope you don't mind me jumping straight in and asking advice straight away, but i've so far found you all my only reliable source of advice.

My mum has just been refused CHC funding despite having 4 highs (cognitive, psychological, mobility, food and drink) and 4 moderates (behaviour, communication, continence, drugs) in her assessment and these being agreed by the PCT. Like recently mentioned there seems to be no definitive number of points that are needed and unfortunately in terms of her breathing, skin etc my mum is very healthy. She has a diagnosis of dementia and think this is reasonably common for this group of patients. We are not alone with this as the hospital are equally confused. We could possibly get a couple of the moderates to high with further evidence.

Where do we go from here are we flogging a dead horse to pursue this? it all seems to be so far as mum and dad worked so hard all of their lives for no end it seems. sorry to moan but struggling a little with all of this despite having read alot around the subject

monkeyspanner

fedupalready wrote: »

Dear all

I hope you don't mind me jumping straight in and asking advice straight away, but i've so far found you all my only reliable source of advice.

My mum has just been refused CHC funding despite having 4 highs (cognitive, psychological, mobility, food and drink) and 4 moderates (behaviour, communication, continence, drugs) in her assessment and these being agreed by the PCT. Like recently mentioned there seems to be no definitive number of points that are needed and unfortunately in terms of her breathing, skin etc my mum is very healthy. She has a diagnosis of dementia and think this is reasonably common for this group of patients. We are not alone with this as the hospital are equally confused. We could possibly get a couple of the moderates to high with further evidence.

Where do we go from here are we flogging a dead horse to pursue this? it all seems to be so far as mum and dad worked so hard all of their lives for no end it seems. sorry to moan but struggling a little with all of this despite having read alot around the subject

Do you agree with these assessments? Would any assessment be different if your Mum wasn't being treated e.g. is she taking behaviour modifying drugs.

I would not want to put you off but although as far as I can tell there is no set targets for the number of highs etc. I think it would be unusual to get CHC funding if an applicant has no severe ratings.

fedupalready_2

Hi Monkeyspanner

thanks for replying. Some of the statements seem reasonable but certainly one or two of them could potentially become a severe. i will bear this in mind, its a complete minefield and obviously difficult as alot of mum's problems are considered not to need nursing assistance.