This page is linked from the "simple advice to families.." on the front page of
, and the line which says:
"consider refusal to pay for care. If so, think it through and do what is best for the patient. "
You should only be considering refusing to pay for care if you have followed our earlier simple advice, including confirming that you do "have a case". e.g. by comparing the patient's medical condition with that of Pam Coughlan. See PAMSDAY on the advice to solicitors page.
This page has been set up to avoid the need for families to consult Derek or others within the NHSCare.info Campaign on their deciding whether to refuse to pay for care. At the time of writing this, only a few thousand people know about www.nhscare.info, and we hope this figure will increase. Our current guestimate is that some 75,000 people within care homes should not be paying for their care, which ammounts to some £3 billion of fees per year. We also believe that perhaps 700,000 families are owed some £30 billion due to the backlog building up over 10 years.
There are too many families out there needing advice, for our small team to help them directly. All we can do is put what information we can onto www.nhscare.info and help "spread the word", including to those who can provide good advice at a local level.
Refusing to pay for the care home has been the most successful method yet employed by families, but the decision may not be a simple one - particularly when considering "what is best for the patient".
"Doing what is best for the patient" may not be a simple decision, and may conflict with what seems the best course of action to claim their right to 100% NHS funding. In some cases the situation may not be very different from one in which you have a loved one with a knife to their throat, with a mugger demanding that you hand over your wallet.
The simplest situation is one where the patient is still in Hospital, and the NHS wish to free the bed by moving them to a nursing home - paid by the family, of course. Many of Derek Cole's so called "refusniks" were in this situation. The family are in a strong negotiating position if they are satisfied the patient is being well cared for in the Hospital. Unfortunately there are cases where this is not the case. The NHS has many ways of exerting pressure on the family, including threatening to move the patient to another NHS hospital much further away.
Every case will be different, and the right thing to do is not simply a "matter of law" - particularly when dealing with people or organisations who believe they are "above the law". There is no substitute for involving friends and family in your decisions.
There are many cases where Social Services staff, and sometimes NHS staff, have become "enemies" of the family - at least in the minds of some families and those sympathetic to our Campaign. The reason is, of course, that they have had to do "the dirty work" of providing mis-information, obtaining signatures, etc. Confrontation between families and Social Services or NHS staff has led, in a few cases, to "vindictive behaviour".
In the past their actions would have been understandable and due to ignorance. However, the situation is changing with more NHS and Social Services staff knowing about www.nhscare.info, "Coughlan", and publication of the RCN document in March 2006 (see our front page).
It makes much more sense to "keep your cool" - difficult as that can be - and try to win friends rather than foes. Give them a copy of the single page NHSCare.info flyer . It has some advice aimed directly at them. Give them time to think about it, including how the instructions received from their boss might differ from the law and their conscience.
"Take your time" may be easier said, than done - particularly if you are not happy with how the patient is being cared for now, and need to make urgent decisions for their sake. If the patient is in an NHS Hospital, is happy, and you are satisfied with how they are being looked after, then you can afford to take your time - even if you agree with NHS/Social Services that the best place for them in the long term is a private nursing home.
If circumstances force you to agree to the patient being moved from the hosptal into a care home, then you may decide to adopt the strategy of agreeing, but make sure that all paperwork, including letters written, notes from meetings, and care home contracts, assert your claim to 100% NHS funding. You may decide to adopt the same approach as Robin, detailed on his mother's case page, where he gave Social Services and the NHS three months in which to seek proper legal advice.
All paperwork signed by you may make it clear that any initial funding by the family is to be regarded as a "loan" - with a suitable interest rate for late repayment. Your "refusal to pay" is then postponed for several months.
However, your strongest negotiating position is where the patient remains in an NHS Hospital bed.
You may be successful in getting the NHS to agree to 100% funding of the care home costs. i.e. "Continuing Care". The important stage is when you have this in writing and from an agreed start date. It is not unusual for people to receive a 'phone call to say Continuing Care has been granted, only to find this decision has been reversed later. e.g. "because it is a residential home and not a nursing home" - such a reason is not lawful anyway. The issue is whether the patient has a health need: not the location, which could be hospital, nursing, residential, or their own home.
The patient will probably be re-assessed every 3 months, and it is not unusual for the patient to make improvements if they are well cared for. It is not unreasonable for the NHS to stop funding patients who have recovered, and no longer have a sufficient health need to remain in a care home or a hospital bed. Unfortunately, we believe that there are cases where - perhaps after a long argument with the family over 100% NHS funding - Continuing Care is granted, but then revoked 3 months later. This is why having a well documented description of the patient's care needs is important. The family should be aware of this risk related to the re-assessment process.
I hope to add more advice to this page in the future.