It is a very long time since I registered to be on the support forum and my darling mum died two years ago aged 97. I did not have a clue about CHC Funding until they turned her down. So I researched, read endless articles. What I have learned is never give up. It is not the the condition of Dementia but the system of CHC Funding. In my opinion CHC Funding is on par with the Post office scandal. It was not the Postmasters but the system that is at fault. The whole CHC system is set up to deny CHC funding for the most vulnerable in society. It is indeed a National scandal. After going through the whole appeal process The Independent Review panel found that my mother's assessment was 'unsound'. She received reimbursement of her fees for the assessed period. The key is the |Care Act 2014 S22. The LA is restricted in terms of what services it can provide. ie Social Care as opposed to Nursing Care. I am now at the beginning of a Retrospective Review for an unassessed period of care. The whole process to date has taken over 3 years and I ask myself why am I doing this. I am doing this because it is just plain wrong, in my view the system is corrupt. The system is so complex, even the assessors at times do not understand it. In my view the NHS is discriminating against people with Dementia and have virtually privatised dementia care. Whole teams in every county have been set up by the Government/NHS to manage the system, which is slanted against the person with dementia. Must cost billions. they all have their own management system, assessors and administrators. It is in deed a National Scandal. Write to your MP's (I involved mine and he was very helpful)). Never ever give up, keep going, understand the impossible and fight for your loved ones rights.
I was finally successful in getting CHC Funding for my mum and I am now starting the nightmare again for retrospective funding.
- Thread starter daisy60
- Start date
That's so interesting that you make an analogy with the Post Office scandal and definitely makes me want to understand more. I have seen this come up on here quite a few times and it's something I'm not totally ignorant of but largely I am. I never listen to 'You and Yours' on Radio 4 but turned on one day before the news and it was the same topic. You seem to have got that there is a big injustice going on. Would you feel comfortable speaking out more about it I wonder so you could have further impact?
It's a game of semantics, Continuing Health Care (CHC) relates to health care issues and apparently, somehow dementia in most forms isn't a health care issue.
That said I have nothing but praise for the help I got with first wife then mum, maybe that was then, maybe because men looking after women get more help, or simple geography to do with where I live, but I have no complaints.
My wife ended up getting sectioned so her care was section 117 funded when I became ill, all free sadly she passed away before I got better and could go back to caring.
Should smokers get charged for lung related illnesses, they chose to smoke, AZ and related conditions isn't a lifestyle choice. K
That said I have nothing but praise for the help I got with first wife then mum, maybe that was then, maybe because men looking after women get more help, or simple geography to do with where I live, but I have no complaints.
My wife ended up getting sectioned so her care was section 117 funded when I became ill, all free sadly she passed away before I got better and could go back to caring.
Should smokers get charged for lung related illnesses, they chose to smoke, AZ and related conditions isn't a lifestyle choice. K
I don't think anyone who has been through the CHC process would argue with that statement. I spent almost four years fighting the 'system' on behalf of my mum. If a supposedly transparent, person-centric funding process takes four years to navigate even with the help of an MP and solicitors there is something fundamentally flawed (read corrupt) with that process.
The unspoken narrative by those who administer the CHC funding process is to hinder, obstruct and obfuscate to such an extent that people will give up at the first hurdle. If they don't give up at the first hurdle they are forced to navigate a system made so complex that it's sole purpose is to wear them down into submission.
For those who are 'lucky' enough to get the funding their fight is still not over. Eligibilty for funding is reviewed 3 months after the eligibility decision and then annually thereafter and there is evidence that these reviews are being used to recommend that a persons needs have changed to such a degree that a further MDT is required and that subsequent MDT finds the person no longer eligible. Some of these peoples needs have changed - but for the worse, and some have been end of life, yet have had their funding removed.
Any challenges, appeals or complaints about failures in process are dealt with and adjudicated by the same people who are responsible for those failures in process. The ability to have a completely independant review of CHC decision making is not afforded to people until they have been through extremely lengthy NHS instigated procedures. Whilst that is going on the people who should be getting the funding are having their bank accounts emptied and homes sold in order to pay for their primary health care needs. And for those who have no assets and are funded by social services it is deliberately, and illegally, putting the onus on local authorities to fund care for needs which are well outside their legal remit.
I'm not sure what the answer is to addressing the scandal. There could be a judicial review which is expensive (£millions), which has been done and failed. Although, these were based on individual cases so may be a class action would be more impactful. However, a class action involves more cases which in turn results in more £millions in legal fees.
Media attention. It gets mentioned occasionally on TV and radio but nothing of significance as the media only gets involved once the 'story' gets juicy. They didn't give much airtime to the post office scandal until relatively recently, Computer weekly and Private Eye being the exceptions.
I agree, the system is flawed, overly complex (for a reason ), it is a nightmare to navigate and understand. In my view it is a national scandal on par with the Post Office Scandal. Someone did crown fund for a judicial review but it was thrown out because the Judge said there was an appeal system. The system is flawed for a reason, to protect NHS budgets.
It is vital to look at the care Act 2014. Those moving into Residential Care are means tested but those eligible for CHC Funding all fees are paid by the NHS if they have assets. Dementia Care is privatised for some but not others. Not only that those with assets pay much higher fees than those placed by the Social Services or NHS. Thereby subsidising them because the NHS and Social Service have fixed rates which are much lower than privately paying clients . If a person moves into a nursing home a DST assessment must be undertaken before FNC. NSF for Continuing Healthcare funding. The Care Act states clearly that to qualify the needs must be of a Nature and Degree and Ancillary and Incidental to accommodation. Basically anyone moving from a Residential Home to a nursing home and in end stage dementia should qualify. However what the CHC Teams (yes there are whole teams with managers and directors purely set up to stop people getting CHC Funding) they will for instance when looking at Behaviour they will use terms like 'not a barrier to care'. Or even though someone may well be doubly incontinent they give a lower domain score if they are not catheterised.
My advice never give up, challenge every decision, use the appeal process. I won my appeal at the IRP (Independent Review Panel) (NHS England). It may well take several years but in my view it is about justice for the most vulnerable in society. The only thing I can think of is to set up petition and hope that it reaches the numbers required for it to be heard in Parliament.
Remember it took the Post Office hero around 12 year to finally get justice for the postmasters. Imagine how many elderly people with dementia who have died and sold their home to pay for their care, or have a charge put against them.,.
Many Social Workers are not clear about the process either.
It is vital to look at the care Act 2014. Those moving into Residential Care are means tested but those eligible for CHC Funding all fees are paid by the NHS if they have assets. Dementia Care is privatised for some but not others. Not only that those with assets pay much higher fees than those placed by the Social Services or NHS. Thereby subsidising them because the NHS and Social Service have fixed rates which are much lower than privately paying clients . If a person moves into a nursing home a DST assessment must be undertaken before FNC. NSF for Continuing Healthcare funding. The Care Act states clearly that to qualify the needs must be of a Nature and Degree and Ancillary and Incidental to accommodation. Basically anyone moving from a Residential Home to a nursing home and in end stage dementia should qualify. However what the CHC Teams (yes there are whole teams with managers and directors purely set up to stop people getting CHC Funding) they will for instance when looking at Behaviour they will use terms like 'not a barrier to care'. Or even though someone may well be doubly incontinent they give a lower domain score if they are not catheterised.
My advice never give up, challenge every decision, use the appeal process. I won my appeal at the IRP (Independent Review Panel) (NHS England). It may well take several years but in my view it is about justice for the most vulnerable in society. The only thing I can think of is to set up petition and hope that it reaches the numbers required for it to be heard in Parliament.
Remember it took the Post Office hero around 12 year to finally get justice for the postmasters. Imagine how many elderly people with dementia who have died and sold their home to pay for their care, or have a charge put against them.,.
Many Social Workers are not clear about the process either.
