Continuing Health Care - Preparing to fight PCT's decision

Nurse_assessor

Cant say i disagree with anything you say moneyspanner the system is not fair with lots of things in this country.

Katykat

Soolin- it matters not where your father resides, whether a nursing home, Dementia ( usually caled EMI units) or even his own home. Even the cause of his deterioration is not supposed to be taken into context ( I'll say more about that), It is all about him, how his illness affects his life, what kind of care he needs etc. The government introduced the National Framework guidelines for every PCT to adhere to to determine whether anyone qualifies for fully funded NHS care. Unfortunately, every PCT interprets the guidelines differently, so there is still the stupid situation of a postcode lottery. Before he was admitted to the home, your father WAS LEGALLY ENTITILED to an assesment, called a checklist. If he scored a certain amount of points, he then should have had a full assesment, for fully funded care. If he scored highly enough, then ALL HIS FEES MUST BE PAID BY THE PCT, . If he scores lower, then he would be classed as needing NHS contribution, which is about £106 a week. This is supposed to go towards his home fees, but needless to say, many homes determine that people in this catagory need more input, so their fees increase by around £106 pw. Funny that, isn't it?
Now , about that cause of deterioration. If someone is injured in an accident & is left unable to feed themselves, incontinent & needing lots of medication, they are supposed to qualify for full care ( I say supposed, because believe me, the PCT fight tooth & nail to avoid paying anything). But & on if a person with dementia cant feed himself, is incontinent & needing lots of medication, THEY ARE SUPPOSED TO BE ASSESSED BY THE SAME CRITERIA. Unfortunately, they're not. PCT try to pass it off as "social care", ie OLD AGE. Therefore, you have to pay for it yourself. WRONG, WRONG WRONG. ( By the way, when Tony Blair became Prime Minister, his promise was that no one should have to sell their home to pay for care - well, how many homes have had to be sold since then? )
Apart from some very good advice on this forum, there is an excellent forum where you can get help from people like you who are just beginning the fight( & believe me, it WILL be a LONG fight) & people who have been through it & won.
http://freenursingcare.findtalk.net/general-chat-f1/?sid=6ddbb732d7531656d701f775cabccfb3

Go for it Soolin, it seems to me your father is entitled to it.

soolin

I have tried registering for that forum but I have never had my log in details approved, I'll send a follow up email shortly.
Dad probably had some sort of episode he went from being a bit forgetful and panicky to full blown dementia in about 4 days. He no longer has any idea about anything, he cannot tell day from night and no longer recgnises me, although he does sometimes tell the care home staff that he knows me and knows he loves me..so guesses I am his mother. He is as helpless as a toddler and I miss my dad.

CHCscandal

Nurse_assessor wrote: »

I just wanted to say that as a nurse assessor for chc we do not make any decision lightly. We have to work with paperwork we dont agree with and we find every not eligible decision very difficult. However the money pit is not bottomless and every person that meets the criteria will get the funding. It is not our falut that evidence is needed to meet chc. We work within goverment restraints. I am willing to offer advice if needed Thanks

Beaujolais - Nouveau Quote 'Well, of course I don't know which PCT/SHA you work in but I do now have experience of two SHAs' attitude to assessing my mother for CHC; and both of them have been absolutely dreadful - untruthful, lazy, ignorant, incompetent, negligent, bullying. I am too angry to say any more at the moment, Unquote'

I absolutely agree, and more coniving is another adjective!

Well Nurse Assessor, firstly What is a Primary Health Need please?

Secondly, a clue to the whole corruptive problem is in your post, 'the money pit is not bottomless' this, I suggest, is your objective along every other pct/trust/sha/ss/la in the country.

Money, not NEED. Rationing....

Instead of supplying services on a demand basis as it was before 1980, your 'industry' now works on a supply basis and rations, the whole continuing care scenario is rationed to suit your internal objectives and the MEANS of the person of course!, Health is redefined as social/personal care without budgets going over, and the underlying reason for this is 'NHS PLC', coming soon in your area.

I am sorry if this offends you, and you truely try to 'stick within the rules!' 'what rules!' criteria' there is no criteria in the 1948 NHS act, the phrase is anyone residing in this country, visitor as well, will receive health care FREE AT THE POINT OF NEED, if they have a disability, illness or disease.'

Continuing in patient care is for long term institutional care, toehrwise the people wouldn't NEED to be in these 'homes' for their needs.!

That is the top line, bottom line and anything in between, the law has not been changed at all.

The Secretary of State has developed a 'CONCEPT' called 'PRIMARY HEALTH NEED', it is not in the law, it freely says so in the New Framework, this derives from the 1999 'coughlan' case, where the judge said that her needs were primarily health needs, ALTHOUGH SHE HAD/HAS LITTLE OR NO ACTUAL NURSING NEEDS AT ALL, EVEN TODAY, The judge said that her needs were of a wholly different nature to that which the social services could provide, when their main repsonsibility is to provide only a social service.

The system is full of perverse incentives, it stinks, the current framework, is based on NEEDS only, NOT actual care or nursing input, those are not allowed to be incldued in any rationale, but time and time again, on various forums, it is obvious that robust rationales for refusal are not robust, they constantly refer to, place of care, inputs, specialist inputs, social care only!, nursing etc, in order to deny, they are not permitted, but the IRP panels do not acknowledge this.

Here is another forum where you will find all members are like minded people to help & support:-

http://continuingcareforum.lefora.com/

Finally nurse assessor, please! what is an actual primary health need?

Not opinion or interpretation, the actual objective definitive definition please if you know?


.

tubsmacker

Nurse_assessor wrote: »

Cant say i disagree with anything you say moneyspanner the system is not fair with lots of things in this country.

As I see it, you need to be on the brink of death to qualify for CHC funding using the DST domain criteria.
The 1946 Health act makes no mention of any requirement to meet any specific criteria to qualify for free care at the point of delivery. You are assessing people using a criteria designed to refute care where it is lawfully entitled.

Any issues of funding are not your responsibility to take into consideration. If the government can find the money to engage in conflicts in many parts of the world, then it can certainly afford to fulfil its obligations to the elderly and the vulnerable who have in many cases paid various taxes during their lifetime to the government in full expectancy that they would be given the NHS care they have been promised.

tubsmacker

Nurse_assessor wrote: »

I just wanted to say that as a nurse assessor for chc we do not make any decision lightly. We have to work with paperwork we dont agree with and we find every not eligible decision very difficult. However the money pit is not bottomless and every person that meets the criteria will get the funding. It is not our falut that evidence is needed to meet chc. We work within goverment restraints. I am willing to offer advice if needed Thanks

I have a couple of questions Nurse Assessor. Firstly what instructions do you receive from your superiors regarding restricting funding on cost grounds? Secondly, Given that dementia related conditions are a serious form of disability, how do you advise that patients or their relatives best present their case to obtain CHC when the condition is usually swept aside as a 'social care' issue?

Jake_20

Hi All

Firstly I would like to say how valuable this thread is for advice and guidance in dealing with CHC.

After spending hours reading through the posts I thought I would briefly explain my family story and see if anyone has any thoughts or advice.

My Grandad is nearly the grand old age of 90. Before February 2010 he resided at home with a care package put in place by SS of 4 x a day carers along with a high amount of care and time provided by the family. In Feb 2010 he was admitted to hospital with a UTI, Chest infection and dehydration (one of many re-current UTI’s), he is still in hospital now currently on a rehabilitation ward, where they have declared “they can do nothing for him”. Previous to this admission he has been admitted to hospital around 4 times in six months with UTI’s, infact he is rarely free of them.

He suffers from both types of Dementia vascular and Alzheimer’s. His condition has deteriorated rapidly.

He is doubly incontinent and has a long term catheter fitted.

He is unable to feed/drink himself, has to have thickened fluids spoon fed to him and a pureed food diet. He refuses food/fluids hence making him dehydrated and developing UTI’s.

He is now bedridden although before admission he could some days walk with a frame and the help of someone. He cannot move or reposition himself or weight bear.

He has developed a Grade II pressure sore from being bedridden and is on an air mattress and has to be turned every three hours. He has scored 21 in the “waterlow” test which puts him at high risk of developing pressure sores.

A hoist is needed to transfer him in and out of bed.

He is severely under nourished and under weight, his BMI is dangerously low, infact since his admission he has lost a considerable amount of weight he could not afford to loose.

He is very confused, hallucinates and lives in the “past” where he talks about people that have now past and shouts out on occasions. He does not know who we are.

We were told by the discharge nurse that he requires 24 hour nursing care, turning every 3 hours due to pressure sores and would not be allowed home. We had always said that we would never let him go into care and after some family discussion realised that we could not provide the 24 hour care he needed and meet the demands he required.


They told us they were going to carry out an assessment for his care at this point we did not realise the importance of the assessment in terms of it providing CHC.

They assessed him and come to these decisions:

Behaviour – No Needs (Even though he refuses food etc)

Cognition – Severe

Psychological Needs – High

Communication – High

Mobility – Moderate!!! (He is bedridden, wheelchair confined, cannot weight bear/reposition, muscle loss):mad:

Nutrition – Moderate (Suffers sever dehydration, severe weight loss, extremely low BMI)

Continence – Moderate (Doubly incontinent, long term catheter)

Skin – Moderate!! (Pressure sore, Grade II, V High risk of pressure sores in assessment)

Breathing – No Needs

Drugs/Medication – Low

ASC – No Needs (When UTI present results in comatose state)

To conclude they stated

“Following the Primary Health needs criteria nature, complexity, intensity and unpredictablility the NHS CHC criteria is not met at this time. Mr **** needs are not of a complex or intense nature that require a high level of clinical staff interaction.

He does meet the criteria for Funded nursing care as he will require registered nurse intervention regularly and at any time his condition should deteriorate.

A Nursing home placement is recommended in view of his recent UTI occurring since his admission.”


We feel that he has been marked down on a number of these Domains, no suprises there and should reach a severe in mobility, you don’t develop from sores from moving around !

We are appealing against this decision and have been given a letter stating he does not qualify and to appeal contact the Clinical Continuing Healthcare Manager at Sandwell PCT.

I would be interested to hear any peoples views on our situation which as I gather is not uncommon, and any advice/recommendations would be greatly appreciated. I could go on forever but hope this covers the main points.

Oh yes and we receive calls from the SW to ask if we have found a nursing home, we have informed them that we have not found one to the standard we want and will not just place him in any old nursing home for the sake of freeing up a bed space. We have also been given a financial assessment form as he owns his own house and has quite low savings.

Many Thanks in advance.

monkeyspanner

Hi Jake
First of all I'm sorry to hear about your Grandad and your family's predicament.

My initial reaction is that comparing your description of your Grandad's medical problems and the results of the CHC DST assessment you would think that two different people were being described. I believe that as usual the assessment has grossly underestimated your Grandad's condition in several domains. This is against the explicit instructions of the National Framework which states that if any doubt exists the more serious category should be scored.

You should appeal the decision and if you feel its appropriate detail the domains where you believe the score is incorrect. The appeal process could take several weeks so in the meantime you can still consider a care home (with nursing) placement.

You may well have to go along with the financial assessment and the marketing of the house. Couple of suggestions here:
1. If the savings are less than the lower savings limit £23000 and you are marketing the house you can ask for a 12 week disregard on the value of the house.
2. Alternatively you can ask for a deferred payment arrangement were the council pay the fees and take a charge against the value of the house. This charge accumulates without interest and there can be a fringe benefit in that if the council arrange the fee payment it is likely that this would be at a lower level than an individual could agree with a care home.
Going along this path would not disadvantage you in any subsequent award as long asyou could obtain a retrospective award.

In any subsequent assessment ask to be present and if you disagree with any domain assessment make the point at the time and make sure your objection is noted. At every stage retain a copy of all records you can get hold of including medical records for use at any appeal hearing.

Finally it appears that your Grandad is not getting any better in hospital. This is not unusual and many elderly people suffer from a general lack of basic nursing care in hospital resulting in malnutrition and dehydration. I would advise moving as quickly as you can to get him into a care home where hopefully his basic needs can be properly supplied and hopefully his condition improved.

Jake_20

Thankyou very much for your speedy reply and advice. It's a relief to hear another experienced persons perspective on the case.

We do strongly believe that his case has been severely underestimated and i have also read that the scoring should be marked more serious if in doubt.

You reiterated our thoughts in that we do have to move him as soon as we can and we have been to look at a nursing home this evening that has a placement, and that we are happy with. We were concerned as to whether this would hinder our appeal process but from reading past posts its clear that this is the path some people have to take.

His savings are valued at less than £23,000, and SS have explained the option for the 12 week disregard period but we hadn't been told about the second option and the fact that the payment is likely to be lower arranged through deferred payment arrangement. I think we will enquire about going along that route.

We have already asked for medical records upon a visit to see my grandad, however they stated that we could not see them and that a doctor would need to be present and said that we could go on Monday at 2pm to look discuss them with the doctor??? Is this the usual procedure? and how do we get copies?? The nurses are not very forward at providing information.

We have also had his house valued today and are looking to put it on the market soon, which is very sad considering the reason for it.

Thankyou again for your valuable information.

Savvy_Sue

When my dad was in hospital, at least some of his notes / basic observations were usually in a file at the end of his bed, and we all used to read them ...