• Phil Austen-Jones

Is there an agenda when fake guidelines are used?

The story of my West Hampshire CCG NHS Continuing Healthcare hell is long and contains a lot of detail. So a quick recap of where we have got up to.

· The care agency were not getting paid by the CCG in a timely manner

· WHCCG then could not find the details of the care package – we had a copy of their records but they never asked us

· Rather than be open and honest with us, WHCCG instigated an annual review for November 2017 despite us having one in April 2017

· WHCCG misinformed (lied to?) us for years about the reasoning for the review

· Among other failings in the November 2017 review, when we said we would not agree to a reduction in the care package the reviewer suddenly changed the outcome by stating that my wife may no longer be eligible and a full reassessment must be done which could result in total loss of care package (WHCCG has never appropriately responded to this issue) – all this in direct contradiction of the views of the medical experts who know my wife’s medical condition

Whilst WHCCG did not fully answer our complaint against the November 2017 review, they did agree to set up a new review, rather than do the full reassessment. This new review took place in January 2018. The outcome was shocking.

Considering WHCCG’s cost saving agenda within NHS Continuing Healthcare (despite it being needs based not cost based) and the actions we faced in 2017, we believe that the case coordinator for the January 2018 review was sent in with one job – refer our case for full reassessment.

This would be unlawful.

According to section 21 (2) of The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, a review of eligibility should only be conducted if the person may no longer be eligible. This is the law. Technically, someone could choose to consent to an extra reassessment but we certainly were not going to waste our time, energy and mental health on a reassessment when it is clear that my wife continues to be eligible.

And, as you will see, even the case coordinator thought my wife was still eligible and that a reassessment would be a waste of time and money.

In theory, the eligibility process is quite straight forward. There are eleven domains (plus an extra one for ‘anything else’) which are scored either ‘no needs’, ‘low’, ‘moderate’, ‘high’, ‘severe’ and, in four of the domains, ‘priority’. Once the scores are determined, they are considered as a whole under Nature, Intensity, Complexity and Unpredictability.

The legal document for this assessment is called the Decision Support Tool (DST). Paragraph 31 states, “A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:

· A level of priority needs in any one of the four domains that carry this level.

· A total of two or more incidences of identified severe needs across all care domains.

Where there is:

· One domain recorded as severe, together withi needs in a number of other domains, or

· A number of domains with high and/or moderate needs,

This may also, depending on the combination of needs, indicate a primary health need.”

In a review of someone who has been identified as eligible, the focus should be on whether the care package continues to meet the needs of the individual. According to the law, reviews can only refer back for reassessment if needs have reduced to an extent that the individual may no longer be eligible.

So what happened in our January 2018 review?

First of all, the reviewer seemed very pleasant and very understanding of my wife’s health issues. Secondly, she did the review in a manner completely different to our previous two reviews. Whilst in April 2017 and November 2017, we had general discussions around the care domains, in this one we had to rescore against the DST criteria. WHCCG has never answered whether this was their process or not.

Dutifully, we went through the review process, scoring against the DST and comparing to the original DST scores from 2009. There were minor changes to care domains that are not part of the key issues in my wife’s case. The only clear change was a reduction in a score from moderate to low.

Far more important though was that the key scores remained unchanged. Two severe scores were determined (one based upon fact that the description written in 2009 matched the needs as presented now) and one priority in Altered States of Consciousness (ASC). Considering the criteria for ASC, which the experts used in their supporting letters, it is no surprise at all that priority was determined.



ASC that occur must days [most definitely], do not respond to preventative treatment [we have tried close to twenty different treatments], and result in a severe risk of harm [I may be wrong, but I presume that death is fairly serious].”

There was also an error in the process. The issue of my wife stopping breathing in seizures was only recorded in the ASC domain. It should also be recorded in the breathing domain and may have resulted as an additional priority score rather than ‘no needs’. (For reference, paragraph 24 of the Decision Support Tool (DST) and Practice Guidance 30 in the National Framework 2018 show that the issue should have been recorded in the breathing domain as well. These documents can be found on my website.) This was an error of process but we still had one priority and two severe scores.

Thank goodness. Eligibility cannot be in doubt. The life-saving care for my wife will continue.


Contrary to WHCCG policy, the National Framework for NHS Continuing Healthcare and the law, the case coordinator said that our case had to be referred for a Multi-Disciplinary Team (MDT) meeting to use the DST to reassess eligibility.

The reasoning was even more staggering. She said that any change must go to MDT. We were both flabbergasted and outraged. We knew this was not true. But she said, and we have it recorded, that it was “simply the guidelines”. She also said, “The guidance is any change goes to MDT,” and “I have to follow my guidelines and they say any change means MDT.”

However, it was clear that she did not agree with the need to refer to MDT for reassessment. In our debate about “minor changes” (quote from the case coordinator), she said, “regardless, one priority would mean someone is CHC eligible.” It was agreed that she would go to a manager to ask, and these are her words, “there is still a priority, therefore why do we need to go to a Multi-Disciplinary?”

My father, a retired dental surgeon and forensic odontologist, was present at the meeting. He asked, “If staffing is an issue, why do they want to hold an unnecessary MDT?” The response of the case coordinator was simple.

“I know. It doesn’t make sense, does it.”

The case coordinator clearly disagreed with the referral to MDT but couldn’t do anything about it. Seventy-five minutes later, she phoned to say that the senior manager had said the case is going to MDT due to the minor change.

Now go back to the original reason for reviewing our care package and the disgraceful behaviour in the first review, along with the cost saving agenda of West Hampshire CCG within NHS Continuing Healthcare. It appears to us that there was a determination to reduce the cost of my wife’s care package irrespective of the documented risk to my wife’s life if care is not in place. Why else would fake guidelines be used?

And then we have to consider the ‘guidelines’ that the case coordinator referred to.


For nearly three years, we have been asking WHCCG for the guidelines claimed by the case coordinator. When they have answered the question (I say this because they have often avoided providing answers), they have failed. The only responses that came close to actually stating guidelines were as follows:

“The guidance is the National Framework for NHS Continuing Healthcare as stated in paragraph 184 “where there is clear evidence of a change in needs to such an extent that it may impact on the individual’s eligibility for NHS Continuing Healthcare, then the CCG should arrange a full reassessment of eligibility for NHS Continuing Healthcare”. It is the role of the Continuing Healthcare staff member carrying out the review to make a clinical judgement on the need for a full reassessment of eligibility.” [6 June 2019]

Problem. Wrong framework (the 2012 version was the relevant one at the time). The framework is guidance so WHCCG policy should be stated as well. The evidence showed that the change in need did not impact eligibility. The case coordinator’s judgement was that an MDT was not required but was “simply the guidelines”.

Then, earlier this year, when we asked for citations for the guidelines, they referred to the National Framework (2012) paragraphs 139 and 142. These say absolutely nothing about any change in need goes to MDT. So we rephrased our question and asked, “Do WHCCG know what [the case coordinator] claimed as being the guidelines.”The response is brilliant.

“At this point in time this is difficult to determine.”

Considering they have our complaint letters and have repeatedly told us they did robust investigations, it is laughable that they now appear to be saying they are defending themselves when they don’t even know what the question is.

It should also be noted that processing data requires informed consent. This is even more important when dealing with sensitive data. Using 'guidelines' that contradict the information available via policies and the national framework means the person is not appropriately informed. The fact that the guidelines claimed do not even exist, and consent was the legal basis used for processing, the information was obtained in contravention of the data protection act.

And finally, just to indicate the level of harm that WHCCG caused myself and my family, the day after the January 2018 review, I was signed off work due to the mental health impact of the CCG’s actions. I did not return to work for three months. In that time, due to my ill health as a result of the on-going NHS Continuing Healthcare review debacle, I lost my job and my career. I was an executive headteacher.

In my next blog about our experience, West Hampshire CCG makes matters even worse for us and themselves.

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