• Phil Austen-Jones

The evolving justification for an 'unlawful' review

As an executive headteacher, I thought I had a good grasp of data protection. Little did I know that I would have to learn so much more and be able to quote it just to ensure my wife’s life-saving health care would be maintained. As the NHS Continuing Healthcare review process pre-dated GDPR, the Data Protection Act 1998 applied.

“1 (1) In determining for the purpose of the first principle whether personal data are processed fairly, regard is to be had to the method by which they are obtained, including in particular whether any person from whom they are obtained is deceived or misled as to the purpose or purposes for which they are to be processed.”

(Data Protection Act 1998, Schedule 1, Part 2. Formatting applied by me for emphasis.)

Unfortunately for West Hampshire CCG (WHCCG), my previous blog evidenced the fact that we were misled as to the reasoning for the review process that they conducted. If what occurred since were not so horrific, it would be laughable. Rather than admit to any errors, WHCCG went down a different route.

Pre-November 2017 review

27 Oct 17 - “The NHS are responsible for ensuring that the current level of support provided is appropriate in terms of quality, and continues to meet your health needs, therefore a clinical review meeting is now due.” (WHCCG email to PAJ) – NO EVIDENCE THAT A CLINICAL REVIEW WAS REQUIRED

30 Oct 17 – "It is part of CHC funding protocol for clients to have a review every 6-12 months, this with a request for an increased package of care, has prompted our case coordinators to request me to arrange a review meeting.” (WHCCG email to PAJ) – BUT WHCCG POLICY IS FOR ANNUAL REVIEWS AND WE HAD NOT ASKED FOR AN INCREASE IN THE PACKAGE OF CARE

November 2017 review meeting

8 Nov 17 - 30 Oct 17 – “In most cases, reviews are done on a three-monthly basis, on a regular or a six-monthly basis. We used to do them on an annual basis but they’ve sort of like stopped that now… That is the operational policy that is in place.” – (WHCCG verbal to us and we have a recording) – BUT WHCCG POLICY IS FOR ANNUAL REVIEWS

January 2018 review meeting (This was set up after WHCCG accepted some failings in the November 2017 review. Future blog posts will provide details)

22 Jan 17 - “That’s how it came through to us, it was down to accounting… The agency had called us for finances, not to do with changing the package of care or anything.” (WHCCG verbal to us and we have a recording)

Post January 18 review

29 Jan 18 – “What I can ascertain from CONI: …however, it was a call from ------ on the 25thOct to state that Mrs AJ does not have a clinical need, and that the carers are only providing cleaning, and driving services. ------ was the one who requested a review.” (WHCCG internal email) – CONI IS AN I.T. SYSTEM USED BY WHCCG. I HAVE REDACTED THE NAME OF THE CARE AGENCY DIRECTOR. JUST WAIT…

5 Feb 18 - “In Sept/Oct 2017 ------- made contact with CHC in regards to invoicing queries and also requested for a review.” (WHCCG Review Report) – I HAVE REDACTED THE NAME OF THE CARE AGENCY. JUST WAIT…

21 Mar 18 - “…the Continuing Healthcare team confirm that the case review was completed following correspondence from ------- Nursing Agency on 25 October 2017. This highlighted that Mrs Austen-Jones had clinically improved, stating that an NHS Continuing Healthcare review was indicated.” (WHCCG complaint response letter to us) – HANG ON. WASN’T IT A CALL? NOW IT IS CORRESPONDENCE. I HAVE REDACTED THE NAME OF THE CARE AGENCY.

And now, what you have been waiting for.

We repeatedly told WHCCG that the care agency refuted the fact that they asked for a review. Despite this, WHCCG continued to make the claim. After repeated attempts from us to get evidence from WHCCG, we finally received the following response in June 19 to our claim that there was “no evidence to back up any of the statements regarding the reasoning for the review”:

“There are no records to share on the reasoning for the review.”

HANG ON. Did it not state on CONI that it was a call from the care agency? And also correspondence from the care agency? Never mind stating that it was simply time for a review. How can there be no evidence?

We continued to challenge this and eventually received another letter.

4 Sep 19 – “The CHC team received a letter from you dated 14 September 2017 raising a concern that ------- were unable to claim for more than 55 hours per week, as it was your understanding that there was flexibility in the care package up to 2868 hours per year. As the team were unable to find confirmation on our system of this arrangement being in place they scheduled a review as would be our standard process. In addition it is reported by our administration team that they received a call from ------- stating that the carers for Mrs Austen-Jones were only providing cleaning and driving services.” (WHCCG letter to us) I HAVE REDACTED THE NAME OF THE CARE AGENCY.

We finally got an admission in Sept 19 that they did not know the details of the care package, as indicated in the January 2018 review (although rescinded in later internal communication for which there is no evidence). However, it was mitigated with a further reference to the care agency. But it goes from a call, to correspondence, to an unevidenced recollection.

Of all the reasons given, the only one for which we have been provided evidence of is the loss of the records to the nature of the care package. Unfortunately for WHCCG, on receiving the letter, we provided them with their own records that prove that there were records of the flexibility in hours for the care package.

And with huge irony, the problem around the flexibility in the care package reoccurred this year. Dealing directly with Maggie MacIsaac, CEO of multiple Hampshire CCGs who took over WHCCG in the summer of 2019, the problem was resolved within 48 hours after I gave her a copy of the records.

“I have had an urgent look into the payment to the care agency for Rachael’s care. This has now been resolved and the agency will be paid according to what care is needed, in line with the annual budget agreed. I am sorry this happened.” (WHCCG email to us)

If only WHCCG had done this in September 2017. I have always taken the view that you should not judge a person or organisation by their mistakes, but how they respond.

And, just to point out, we have yet to receive evidence that losing the details of the care package is a valid reason for conducting an NHS Continuing Healthcare review. My understanding of data protection legislation indicates that not being able to locate details of a care package for three years is a data protection breach.

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