National Campaign

UPDATE: 31 December 2021.

Our campaign is now getting national attention. Linking with the national campaign led by Rear Admiral Philip Mathias, we have had an article published in the Daily Express. We are very grateful to journalist Sarah O'Grady for her support for justice and fairness in NHS Continuing Healthcare.

Our campaign article

National campaign article

UPDATE: 25 November 2020.

Throughout the last three years, we have acted in good faith in our battle with West Hampshire CCG. Unfortunately, the evidence indicates that this has not always been reciprocated. However, when we have felt that things may be moving the in right direction, we have paused our national campaign in the hope of getting a positive outcome. Sadly, despite the new CEO admitting failings in our case, she has not offered a review, of the actions of West Hampshire CCG, that we deem to be fair, equitable, transparent or lawful. To obtain justice, we are being forced to take legal action. In the meantime, our national campaign restarts.

The campaign will take on a different approach. We will be starting a blog to highlight the issues that we have experienced from West Hampshire CCG, Hampshire County Council, NMC, HCPC, ICO and the PHSO. We will continue to use this page, but the focus will be on the documents that evidence our case. We will also be posting on Twitter.

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.

24 November 2020 - The company enlisted by WHCCG to conduct the 'independent' review withdrew as I stated I wanted to he WHCCG's defence and have opportunity to respond. I contacted the CEO of WHCCG to find a way forward. She stated that she would not continue the process, forcing me into legal action against WHCCG.

* 30 November 2020 - Following communication from the CCG, I have updated our letter of 23 November 2020 to clarify the meaning.

26 November 2020 - WHCCG group state, without evidence, that there are factual accuracies in our letter. They also dispute our right to have recorded the review meetings.

We responded asking for evidence of inaccuracies, along with evidence of our right to record meetings without consent.

* 30 November 2020 - See above regarding clarification within our letter, produced prior to response from the CCG.

12 December 2020 - No response yet from West Hampshire CCG regarding evidence of factual inaccuracies within my open letter of 24 November 2020.

15 December 2020 - Finally receive a response from Hampshire CCG group. Apparently only one factual error which we had already clarified and an apparent admission that they were wrong in stating that we were not allowed to take the recording. Our unambiguous response is also here. It was sent as an open letter and they did not respond in the timeframe before publishing.

18 March 2021 - I submitted a subject access request for communication between WHCCG and the PHSO. Two emails were missing having been sent by a secure system. Following a request that WHCCG finds the emails, I received confirmation that they were missing.

21 March 2021 - OPEN LETTER - Further to the missing emails, I wrote to inform Mike Fulford, Chief Operating Officer, that his claim that WHCCG had not tampered with documents was contrary to evidence. I asked for the evidence he relied upon to make such a claim.

5 May 2021 - Response from Mike Fulford to my open letter. He admits not wrong doing, but then he answered a different question. He stated that the CCG did not alter documents from the PHSO before they came to me. Clever ploy. But the issue was the CCG altering documents before they sent to the PHSO in the first place.

9 May 2021 - OPEN LETTER - I responded to Mike Fulford requesting answers to the questions I raised, not his distorted version of them.