We must be told about crucial changes to NHS care funding

I can totally associate with the problems you describe, having gone through very similar trauma resulting in the loss of a dear parent in 2006. I have only just heard about applying for Care Home refunds which I believe should have been funded by my late parents’ PCT. I am in possession of the Care Home records. Could you advise how I go about making a claim directly to the NHS without the necessity of employing one of the many firms now advertising on the internet. I have trawled through the internet myself, been in contact with Age UK (who have in fact been exceptionally helpful), but I would not know where to initiate the claim myself, using the correct documentation. Any suggestions would be most helpful.

Message for Belinda, with apologies and empathy to greenflamingo.

I have spent over two years fighting for funding on behalf of my wife, who suffers from Alzheimer’s disease. Sorry to be late with any helpful suggestion, but I’ve only just found out about the 30th September cut-off date for claiming, and landed here during my search for information – which is sorely lacking from the Government’s promulgation department.
My main suggestion to you is to contact the Alzheimer’s Society, who have volunteer helpers that have been through successful claims, and know the ropes. It’s still a lengthy process, but the help, information, and support they offer is invaluable – usually on a one to one basis – and free.
My other suggestion would be to avoid any of the newly-emerging legal firms offering the usual ‘no win, no fee’ service, unless you have someone you trust implicitly who can give you proof of the firm’s credibility – and then only as a last resort.
I’m currently waiting for the SHA to arrange an independent review of my wife’s entitlement, and the Alzheimer’s Society helped me put together such a strong case, exposing the many transgressions from procedures committed by the CHC/PCT, that I’m feeling fairly confident of a positive outcome.
Be strong, Belinda; and don’t give up.
PS: Don’t let them tell you that you have to have Power of Attorney, or a Deputyship from the Court of Protection in order to make a claim on your relative’s behalf. As a relative, you have rights which are clearly stated in all the procedures. Best wishes.

As others are saying, there are multiple barriers which appear constructed to prevent the law from being followed. NHS Funded Continuing Healthcare is virtually a state secret. People almost always find out about it ‘by accident’ and staff (NHS and SS) appear brainwashed to believe that their own fantastical infrastructure ( a tortuous series of ‘score sheets’ with confusing ‘domains’ and graded levels) supercedes the Coughlan Judgement. In actual fact, the situation is relatively simple: needs comparable to / greater than those of Ms Coughlan are beyond the remit of Social Services. The point to remember here is that Social Services can means-test whilst the NHS cannot. Letters to PCTs invariably meet with gobbledygook replies, (if replied to at all), correspondence is passed from department to department with all the speed of a post office queue, and every attempt is made to make all but the most determined give up. Professor Luke Clemments of Cardiff Law school states in an article that it is ‘..asif ‘Coughlan never happened’. Do not give up. Patients or their relatives must challenge all the inane paperwork – needs are typically down-played or omitted. Go to every meeting, contribute everything you can, research and research this arena, and ensure you have lasting power of attorney set up if appropriate. Remember that you know your relative or friend’s needs better than anyone and take nothing at face value. It can become extremely stressful, but if you decide to involve lawyers, do all you can to ensure that you have selected a specialist. This is not an area for generalist solicitor firms. Begin by downloading the NHS framework guidance to the whole procedure (revised 2010) and study it over and over (available from NHS websites but rarely if ever adhered to by NHS staff). Watch for the smallest of deviations from the ‘book’. Do not let them confuse you with the ‘funded nursing contribution’ – this is not NHS Funded Continuing Healthcare.

If you have read this far, you will have started to understand that it is all an utter disgrace. Please pass on the main message to any it may help.

Dear Mr.Squires,I have tried to find your web page to see if I can assist in any way but the link is not working plkease let me know how to get in touch.
Kind Regards,
Mrs Daughne Taylor

[quote]BTW, it’s pointless anyone saying this is a conspiracy to defraud, as in the misleading website mentioned above, it’s all perfectly legal.[/quote]

No, Helen it is not perfectly legal, the elderly are being defrauded, Yes there is a lot of misleading information out there none more so than from the N.H.S & Social Services They know that they are Acting unlawfully, But get away with it, But get them into court the story is different

Mick

I think we have to recognise that social services are often those in the frontiine and passing on comments and reasonings that they’ve received from the multi-disciplinary team, which is often called the mental health care of older people team, where the consultant sits. Depends where you live, but social services mostly now work in collaboration with the consultants and other members of that multidisciplinary team. CPNs, OTs, Physio, etc. We never met a consultant for a year or more in our early dementia life, the GP arranged for all the scans and tests, in collaboration with ‘the NHS’ and with that multi-disciplinary team, which included a social worker or two. Nobody ever told us about continuing healthcare funding.

It’s possible that Helen’s social worker was just passing on the information that she or he’d been given by the consultant. There is no real and readable definition of what can be provided by social services – lawfully. There’s no definition of ‘social care’ – it’s an artificial distinction that has come to be the norm. A generation has grown to accept and to demand often that care should be paid for by the individual needing care. That younger generation doesn’t give a toss about the fact that other people don’t agree with that view. Our government is made up of multi-millionaires – who will never even need to call upon an NHS dentist for toothache. What do they care?

Coughlan came before the National Framework for Continuing Healthcare (or whatever it’s called now), so the National Framework is lawful and also legal – it came about as a result of Coughlan and various Ombudsman judgments.

I’m not saying it works – it clearly doesn’t work well at all.

There’s a difference between something being ‘legal’ and being ‘lawful’.

It’s possible that not one single one of Pam Coughlan’s “needs” matches one single need of someone else who may be equally deserving and in need of healthcare. How can we possibly compare the needs – physical and mental and whatever else – of one human being with another? How is that line delineated ‘on paper’? It is all down to clinical and personal judgement – and also to the ignorance of those involved more often than not. It’s a box-ticking exercise, that’s all. If you get a good box-ticker you’re ok; if you get a lousy box-ticker you’re doomed.

The assessment system is kept behind closed doors, and people are not made aware of its existence. It’s misunderstood by care home staff, by social workers, by GPs, by doctors in hospital, by nurses etc etc. Many people don’t even know that they can be involved, can receive copies of care/hospital notes, assessments and so on. If you don’t know, you can’t ask and you can’t be involved.

The appeal system is rubbish, and again kept behind closed doors. On it goes, year after year after year.

Helen, don’t be put off posting about your own experience. We all learn from each other, so your point of view is just as valid as anyone else’s here, and if mine’s rubbish you can just dump it. It’s a waste of time and energy to harp on about conspiracy theories to defraud, I agree with you there. Far better to work with the system in place and defeat that system, because unless you can take the NHS to court and challenge the ‘lawfulness’ and the ‘legality’ of the system in place, you won’t get very far.

Avenger, I think your tone is aggressive and rude. I am outlining what I found in social services notes as a matter of fact.

I’m fed up with reading on business websites how this is all some illegal conspiracy. Nobody has been able to take any class action or any other legal action to prove that to be the case. A lot of people are making money out of people like us with their advocacy services etc. if you think it’s illegal consult a solicitor and get some proper legal advice. Then do something about it.

[This comment has been removed for being potentially defamatory. Thanks, mods.]

[This comment has been removed for being potentially defamatory. Thanks, mods.]