• Phil Austen-Jones

You won't accept a reduction in hours for care? Ok, we will reconsider whether you get care at all

My previous blogs have focused on the failure of West Hampshire CCG (WHCCG) to inform us of the real reason for conducting an NHS Continuing Healthcare review in November 2017, along with their ever-changing justifications.


The issues raised are serious enough in themselves. Failure to ensure that consent is informed is a breach of GDPR. When the information relates to sensitive personal data and the processing can have a serious impact on your personal safety, the breach is that much more serious. Add to that, the evolving reasoning indicates a refusal to admit wrongdoing which is even more sinister.


Now we move on to something that is far more serious.


My wife’s condition is life-threatening. Due to the nature of her seizures, there is a serious risk of her stopping breathing. This needs immediate medical intervention. The seizures are unpredictable and without warning. They can and do happen at any time of day or night. This is evidenced in the supporting letters of the medical experts, including professors of neurology, consultant neurologists, a specialist epilepsy nurse and GPs. These experts are part of several medical teams who all care for my wife and have known my wife for up to twenty years.


In the review, which we were misled about, there were multiple failings. WHCCG admitted to some of them and set up a new review. But there is one key point that the responses from WHCCG failed to answer.


After going through all the different aspects regarding my wife’s health (although the reviewer refused to look at certain key documents), the case coordinator accepted that my wife continued to be eligible for NHS Continuing Healthcare. However, he wanted to reduce the care package by removing carers during the middle of the day.


WHAT?


So despite our evidence, the care agency’s evidence and the medical experts’ evidence, someone who has never met my wife and is notan expert in epilepsy thinks that my wife either does not have seizures in the middle of the day or they are only life-threatening if there is someone around.


How ironic that within fifteen minutes of the meeting ending, my wife had a seizure. The time was 13:15.


Unsurprisingly, we said we would appeal any reduction in the care package. All of a sudden, having said that my wife continued to be eligible and with no further evidence, the case coordinator changed the outcome of the review. Inexplicably, he now stated that my wife may no longer be eligible and the case would have to be referred to a Multi Disciplinary Team meeting to use the Decision Support Tool to decide whether any care should be provided at all by the NHS.


Unsurprisingly, I filed a formal complaint. (Please note that at this point, we did not realise that we had been misled (lied to?) about the reasoning for the review so that point was not raised in our complaint.)


On initial reading, the response from WHCCG seemed positive. It was accepted that there had been multiple failures and, as a result, a new review would be conducted in the new year. It was on further reading that we realised that they had failed to answer several issues, including the changing of the outcome from eligible to MDT to consider whether my wife is eligible at all. In theory, this could have just been an oversight, but the failure to answer the question becomes suspicious when considered alongside the ‘non’ answers that followed.


21 March 18 - “The case coordinator clinically considered the evidence relating to Mrs Austen-Jones’s health care needs and recommended that a decision support tool would be best practice. Review decision support tools are not completed in response to complaints or appeals but on the basis of assessments which have included discussion with the patient and their representatives.”

THIS FAILS TO CONSIDER THE OUTCOME BEING CHANGED FROM ELIGIBLE TO MDT.


12 April 18 - “Please be advised that West Hampshire Clinical Commissioning Group have investigated your complaints regarding this matter [the whole process for both reviews] and concluded that the principles of the National Framework for NHC Continuing Healthcare have been adhered to.”

SO CHANGING THE OUTCOME IS ACCEPTABLE?


22 May 18 - “With regard to your complaint regarding the management of your complaint, West Hampshire Clinical Commissioning Group has undertaken a robust complaint process responding to your letters and facilitating a meeting with Mr and Mrs Austen Jones [sic] and Mr S Austen-Jones on 15 February 2018 to discuss both complaints as received on 10 and 12 December 2017 [sic] and 7 February 2018.”

SO WHERE IS THE RESPONSE TO CHANGING OF THE OUTCOME?


6 June 19 - “There are no investigation records to share.”

WE WILL HAVE FUN WITH THIS COMMENT IN A FUTURE BLOG. FOR NOW, NO RECORDS OF THEM INVESTIGATING THE CHANGE OF OUTCOME.


4 September 19 - “It is noted in the review that the case coordinator discussed with you the need to review the number of hours provided with a view to reducing the care hours during the day. It is also noted that your response was that you would not agree to any changes. As a result of this review the Case Coordinator recommended that a DST meeting to assess eligibility for CHC funding was required. He noted that the current package of care appeared to be predominantly in place to meet Mrs Austen-Jones social care needs as evidenced by the care provider records.”

A VERY CAREFULLY WORDED STATEMENT THAT AGAIN FAILS TO CONSIDER THE CHANGE OF OUTCOME FROM ELIGIBLE TO MAYBE NOT.


I must comment on the statement about social care. We fully accept that there is social care in the package, as is allowed in NHS Continuing Healthcare. The prevalence of social care is irrelevant if there is a Primary Health Need, like the risk of dying from a seizure. Even if all the social care elements are removed, healthcare is still needed 24 hours a day.


7 September 20 - “At the time of responding WHCCG believes it responded appropriately to all the questions raised. However, an independent review would be able to look into this in more detail.”

SERIOUSLY?


It seems clear that WHCCG did not want to admit to the failing. If they had, in accordance with their Management of Complaints Policy, they would have had to return us to the position that we would have been in if the mistake had not occurred. This would have led to the cancellation of the MDT and acceptance that my wife continued to be eligible.


Future blogs will indicate that the real aim of WHCCG was to reduce the cost of my wife’s care package, either by reducing the package or removing it entirely. This would certainly have been consistent with their cost saving agenda. The evidence we have of the CCG’s agenda is despicable as it seriously affects some of the most vulnerable people that they should be caring for.

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