The continuing healthcare con

[Elise64]

I found this was a useful visual aid...

This is a useful table but beware of their interpretation of the scale when your loved one is assed.

My mum was reviewed last year and due to her condition we were granted continuous care for her nursing care, with a 6 month review. She passed away a week ago so she never had that review, but before she did I doubted its continuation as they kept saying how well she was doing.

Anyway the point is at the assessment meeting she was scored as low on the incontinence category despite being doubly incontinent, i was told that to score higher mum would need to be doing something like smearing her faeces over the Walls.

So please manage your expectations as their views on severity of your loved ones condition will vary greatly to yours.

 

[Flooz]

So Sorry to hear about your Mun Elise.

I think what you say about 'scoring' is very valid, unfortunately, all too often the category is down to interpretation of the assessor, which can vary greatly from one person to another.

I have a 2nd assessment for Mum in 2 weeks time, and I've found more information since the first one took place, and I will not allow myself to be hoodwinked this time.

The one thing that really sticks in my mind, and I may have said this previously, is that the assessor is not supposed to reduce any 'scoring' because the care needs are well managed. In my opinion, that means that the assessment should be made as if the sufferer was not being cared for. The reality is, that's unlikely to happen. But I shall fight it, tooth and nail.

For example, my Mum scored 'moderate' of food and nutrition, yet if she was left to her own devices, she wouldn't eat or drink ANYTHING. How that can be anything but a severe is beyond me.

 

[lin1]

Have signed
will add it to Facebook
176 signatures now

 

[Flooz]

Thank you Lin. :-D

 

[Elise64]

Thanks Flooz, in the end it was a blessed release but still hard to take.

You are correct when in care they rated in a biased way, at my mums assessment I did raise this point and said if I were to take mum home and stop paying for her care at £800 pw would they score her differently, they responded saying that this would be considered as abandon and this would be a legal issue.

My friends dad did not have Alzheimer's but was unable to get out of bed or do anything for himself, he initially had cc but this was revoked 6 months later.

The fact remains that this situation needs to be resolved as the individual needs to be far down the line before financial support is provided. At the risk of being political if an individual has no material assets the care is automatically provided for free.

Lets hope that this unfair situation is resolved as soon as possible but I fear the economic climate will continue to hinder the cause.

Elise64

 

[Flooz]

.

Lets hope that this unfair situation is resolved as soon as possible but I fear the economic climate will continue to hinder the cause.

Elise64

That's my fear too, although I fail to see why the ordinary person should suffer for the bad financial management of the Government (which ever party is guilty).

I keep using the phrase that not having any money isn't an excuse to act unlawfully, otherwise we'd all be out robbing banks! ;-)

 

[steviep]

Bump... for those who aren't aware of this thread.

190 sigs so far, we need 100,000 so a long way to go yet!

 

[Lulabelle]

Hi Flooz
I have already signed the petition but, if you would like more of a insight into why more people haven't signed and you have the time to trawl through a recent post which touches on this subject, might I direct you to one entitled 'What do we do with Mum's money'. You will see my views posted too.
Best of luck with this one.
Lulabelle

 

[steviep]

I've read through the other thread and taken onboard others' opinions but I still think that the NHS should not discriminate and that ALL healthcare should be free regardless.

There are many examples of mid to long-term healthcare which we are not expected to pay for so why single out mental healthcare?

 

[MikeLIff]

I've signed the petition.
Had a review done recently re;my wife who has Aztheimer's,has been diagnosed nearly 7 years.She scored highly on most catergories but we were refused CHF because they said they need more information.Waiting for another round with them although I don't know what extra information I can give them

 

[Lulabelle]

I've read through the other thread and taken onboard others' opinions but I still think that the NHS should not discriminate and that ALL healthcare should be free regardless.

There are many examples of mid to long-term healthcare which we are not expected to pay for so why single out mental healthcare?

And dementia in particular

 

[Flooz]

And dementia in particular

Totally agree with you Lulabelle. Although dementia of any sort is put into mental health, I often wonder if that is correct. It's my interpretation, I guess, but given that there is a physical cause, i.e. the brain is slowly dieing, is that true 'mental health'? I've always though of mental health as the brain just isn't working properly. It's difficult to put into words what the difference is, but I feel there is a difference.

Although it should make no difference, an illness of any sort is classed as healthcare.

Can you imagine the uproar if people with cancer of having had a heart attack were suddenly presented with a bill for their care?

 

[steviep]

Can you imagine the uproar if people with cancer of having had a heart attack were suddenly presented with a bill for their care?

And MS, ME, MND, etc, which in many cases are long-term, e.g. Stephen Hawking.

 

[Chemmy]

It seems these societies have the same issues:

MS Society


ME Association
It has no specific info on the website but you can order a leaflet which explains

GETTING HELP FROM SOCIAL SERVICES £1.00
If you have ME/CFS and it affects your daily life, you may be able to get help from your local social services or social work department. This essential guide - written by independent health writer and researcher Cathy Stillman-Lowe - tells you how the system works and how to complain if you are not happy with it.

MND Association

The Stroke Association

 

[stanleypj]

I've signed the petition.

I must admit that I don't hold out much hope for any real impact now that I've looked at other petitions. If you enter dementia in the search box you'll see about 20 petitions that mention dementia and some of them are on the very same point as Flooz's. One has notched up 1240 signatures in 9 months, most are in single figures.

There's no doubt that we need to raise awareness but it seems we need to find a better way.

 

[debbiemfg]

Hi Flooz,

I have just posted this and found your message. I have just signed the e petition.
Well the latest with my Mum is that they do want to discharge her, however not until the proper care package is in place.

Dad had the first part of the assessment for NHS continuing care which apparently is funded by the NHS. Anyone else had dealings with this.

They are also delivering a hospital bed to my Mum and Dads flat as they feel that this is the best way to care for her properly.

Second part of the assessment is on Friday but luckily my brother can go to support Dad. It is unclear as yet whether they will qualify for this or if they will have to pay for all the care. Not sure if it is just a lottery !!!

Lets cross our fingers that the decision goes our way for a change.

Regards Debbie

 

[debbiemfg]

E petition signed

Hi Flooz,

I have just posted this and found your message. I have just signed the e petition.
Well the latest with my Mum is that they do want to discharge her, however not until the proper care package is in place.

Dad had the first part of the assessment for NHS continuing care which apparently is funded by the NHS. Anyone else had dealings with this.

They are also delivering a hospital bed to my Mum and Dads flat as they feel that this is the best way to care for her properly.

Second part of the assessment is on Friday but luckily my brother can go to support Dad. It is unclear as yet whether they will qualify for this or if they will have to pay for all the care. Not sure if it is just a lottery !!!

Lets cross our fingers that the decision goes our way for a change.

Regards Debbie

 

[Flooz]

I've signed the petition.

I must admit that I don't hold out much hope for any real impact now that I've looked at other petitions. If you enter dementia in the search box you'll see about 20 petitions that mention dementia and some of them are on the very same point as Flooz's. One has notched up 1240 signatures in 9 months, most are in single figures.

There's no doubt that we need to raise awareness but it seems we need to find a better way.

Totally agree with you Stanley. To be quite frank, I am surprised, given how many families are affected by this whole CHC thing, how little interest it is receiving. Although I can only second guess at the reasons, one without a doubt is those caring for anyone with dementia have better things to concentrate on (quite rightly I might add), but secondly, because we have become far too complacent and accepting of a situation. I am probably guilty of that too, as if anyone had mentioned all this to me 6-7 years ago, I probably wouldbn't have thought twice about it.

Having looked at the site, and searching dementia, I see what you mean. However, although this site concentrates on those that suffer from the various forms of dementia, they are not the only ones denied CHC. I'm hoping that people with other health issues will also see mine and contribute.

 

[Worried Nurse]

Why have only 100 signed? We have 1175 active(?) members. If some don't agree it would be helpful if they told us why.

I came into nursing to help and have ended up specialising in Continuing Healthcare. Unfortunately the framework we have been given means that those in great need of care may still be ineligible for their care costs to be met by the NHS, and as social care is means tested, it often means huge care bills. I am glad it is being challenged at national level too as the government and DoH need to urgently review this framework. In reality, the electorate will not elect a government which recognises the need to raise tax to the level needed to provide free care for all (whether they are deemed to have health or social care needs, which, to me, is often a false distinction) but they should be less worried about being in power and be mindful of our most vulnerable citizens.

 

[steviep]

Whilst we have millionaires and the well-to-do running the country we have little hope of having full social responsibility.

They always manage to find the money to fight other countries' wars though!

I used to work in the aerospace industry and it's frightening how much just the missile casings cost let alone the missiles. The money from each one could easily fund a person's CHC for their remaining lifetime.