Banoo Deodat arrived in Britain from India in the 1960s and worked in the National Health Service for the rest of her career as a liver transplant nurse. Now aged 86, she has had night care withdrawn from her by a decision of North Central London Clinical Commissioning Group (CCG).
Alex Thomson interviews Mrs Deodat’s son, Sean, about the incessant problems that he has had in obtaining NHS-funded care for his mother, who—as the NHS acknowledges in its assessment of her needs—suffers from multiple health problems that have left her bedridden and incontinent.
Even the carers who are sent to attend to Mrs Deodat in the daytime, and the NHS staff who come at night when called in an emergency, are shocked that the local Clinical Commissioning Group has denied her night care.
UK Column has seen the correspondence sent by the Clinical Commissioning Group, which states:
You are not currently eligible to receive NHS Continuing Healthcare.
The nature of Mrs Banoo Deodat does not indicate or present a Primary Health need.
Listen to this interview with her son Sean and you are likely to take a different view of the matter.
Directly after publishing this interview, UK Column received the following authoritative advice to those in a similar position to the Deodat family, from a senior nurse:
I have watched Sean’s interview with you about his mother’s condition and their troubles with North Central London CCG, caused by the refusal of a NHS CHC [Continuing Health Care] package of care.
Despite having personally witnessed similar and worse situations with my patients in the past years, this case still made me angry and frustrated.
Angry, because I know the inside working of several CCGs and their tactics to ensure their databases are slowly cleared of people who are legally eligible for funding.
And frustrated, because patients and their families are not well-informed around CHC matters and often fail to take the right actions, or end up at the mercy of legal firm that charge well above what I consider is ethically needed to challenge these wrong and ultimately unlawful negative funding decisions.
There are at minimum three things that your audience should understand.
First, the challenging of CHC funding decisions is not a legal process. To keep the cost to families down, I have always encouraged them to pursue things as much as possible by themselves, with their choice of my level of involvement in giving them guidance and helping with writing appeals.
Hence, the potential full process, i.e., appealing a first negative decision, attending a local resolution meeting, challenging the decision of the latter, appealing to the competent NHS England (NHSE) department and then preparing and attending an independent review panel (IRP) meeting at NHSE itself, appealing the latter at the Parliamentary and Health Service Ombudsman—and, in extreme cases, up to applying for judicial review to the High Court—should not cost more than £2,000 to 2,500. Some firms charge from two to ten times this, and the no-win-no-fee ones can charge from 10% to 25% of the final awarded moneys. My first client could have been billed around £10,000!
Second, it is important to stick to the full process until the CCG gives up the fight. That can happen an any stage. Their tactic is simple: bet on the family stopping the fight. None of the cases I have followed actually was lost. What happened is that clients just were exhausted from the fight. Even despite my offers to work pro bono, they simply gave up. CCGs know this very well, and they keep rejecting appeals. NHSE pursues a similar strategy, and their Independet Review Panels (IRPs) are increasingly difficult to “win”. Most people do not bother to go to the Ombudsman, let alone try a pre-action protocol for judicial review.
I am sure that you will find this next question intriguing: is it not curious that there have been no judicial reviews around NHS CHC funding cases for more than 15 years? I do not believe that out of the hundreds of thousands of people that have been illegally refused funding, not one has attempted judicial review. The truth must be that CCGs will accept defeat when their receive the pre-action protocol letter by a patient’s family.
CCGs’ expensive legal advisors know that established case law would devastate them: they would lose, and this would create another legal case against the NHS. Hence, your audience needs to understand that ‘stick to it until you win’ is the mantra. They can be reassured that the Ombudsman stage is often enough, as there are also clear precedents there against the typical CCG funding refusal decisions.
Third, be aware that periodically CCGs send out task forces, especially in care homes, of nurses on short contracts starting from £300-400 a day to review people currently on CHC funding, with the sole intent of removing them from their books at all costs: an actuarial decision (incidentally, on a weekly basis I get several e-mails from nursing agencies offering this kind of short-/medium-term CHC assessment nurse contract). I had several of these cases, which we appealed successfully. This often happens when people do not die as fast as the CCG expected.
Unfortunately, it saddens me to say that on several occasions these contracted nurses are unempathetic, and seemingly encouraged by their temporary employer to write reports aiming at a negative decision, and with the task to frame families’ expectations toward a withdrawal of funding. Conveniently, these nurses come and go. In one extreme case, it turned out that one CHC senior nurse assessor’s registration with the Nursing and Midwifery Council had expired. When we reported this, the CCG interestingly was quick in then granting funding.
Your viewers need to be especially alert and get prepared when they hear from their relative’s care home manager that the CCG is visiting for a review; if they have the decency to announce their visit, that is.
In summary, tell your audience to learn the system and, if needed, to get some honest, ethically-priced support on the side to hold their hand as much as needed at every stage.
Tell them to go all the way.
Tell them to be alert.