National Campaign

In October 2017, West Hampshire CCG claimed that our NHS Continuing Healthcare package was in need of a review. Despite repeated attempts by us to inform that their assertions were wrong, the review took place. At this review, we continued to challenge the reasoning but we given information that transpired to be completely false. As such, our consent was invalid. There were multiple other failures. This includes ignoring the views of the medical experts who were adamant that the care package needed to be maintained at its current level. The CCG question whether we continue to be eligible.

We have been forced into making multiple complaints, only for the CCG to refuse to answer questions, be very misleading and fail to back up their assertions with evidence despite clear information to the contrary. We continue to maintain that they did not have valid consent (including for two reviews they did privately without our knowledge).

Following further failings by West Hampshire CCG in relation to GDPR requests (Data Protection Act 2018), earlier this year we submitted a fourth complaint. It took the CCG two months to respond. Copies of the complaint and the response can be found in the Complaints section.

The response received is staggering. West Hampshire has finally admitted that it has no evidence for their five different reasons for conducting the review of our NHS Continuing Healthcare package. Despite this, they still claim that we gave INFORMED CONSENT. If they cannot provide evidence now, more than eighteen months on, how can we have given informed consent? They also claim that we did not raise any objections at the time. This is an absolute lie. And we can evidence it.

Within the complaint, we provided evidence of tampered records. The CCG chose not to respond to this.

These are just two of the issues we have with their response. There are many other issues. Our email response to them can also be found in Documents.

We have tried everything to provide the CCG with the opportunity to admit its' failings. They continue to refuse to do so. With much regret (we are private people), we are launching a national campaign to highlight the concerns in our case, as we are not the only people being affected by these types of behaviours.

Starting in June 2019, we will be emailing approximately one thousand individuals and organisations to raise awareness. From MPs and GPs, to national media and charities. Over the course of months, we will provide the evidence that backs up our views and contradicts the responses from West Hampshire CCG. Disappointingly, we will include how organisations such as Social Services, the Nursing and Midwifery Council, and the Parliamentary and Health Service Ombudsman have made decisions that contradict the evidence, regulations and national frameworks. All these organisations are being reported the the Information Commissioners Office.

14 June 2019 - Opening letter of our campaign, summarising reason for it and how we will evidence our views.

19 June 2019 - Evidence of the medical issues, as stated by the medical experts and it proves eligibility. Document 1 is our statement on it, Document 2 is a brief view of medical statements and Document 3 contains all the other evidence provided to the CCG.

10 July 2019 - Evidence of the failure of West Hampshire CCG to obtain INFORMED CONSENT for the review process, either through misinformation or conducting reviews without our knowledge.

18 July 2019 - Evidence of the failure to have a legal basis for the review process and the attempts by West Hampshire CCG to legitimise it.

4 August 2019 - Details of the failings in the first review (without a valid legal basis nor informed consent) that took place and the subsequent response by West Hampshire CCG to our complaint.

18 August 2019 - Details of the failings in the second review, including how West Hampshire CCG 're-reviewed' the case, without our knowledge or consent, following a complaint from us. The 're-review' altered the outcomes in order to justify an MDT.

1 September 2019 - Details of our second complaint and the atrocious  response from West Hampshire CCG, including their refusal to answer questions to clarify their position. The third document contains the policies, regulations and law that we referred to.

6 October 2019 - West Hampshire CCG has finally admitted that we were misinformed. However, they still claim a legal basis but it is based on maladministration.

18 October 2019 - West Hampshire CCG has ignored our GDPR requests, including deletion of records now that they have admitted that we were misinformed. We sent the following open letter to them.

10 February 2020 - Having postponed my campaign to allow discussions with board members, we are still receiving responses that avoid answering significant questions, including the basis for consent.

3 August 2020 - The reopening of our campaign. West Hampshire CCG has offered an 'independent' review of our complaints in our case. We have had to fight for a fair and transparent process and still await the information requested, beyond the legislative timescales.

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