Consent / Data Protection


We have reported four breaches of Data Protection to West Hampshire CCG.


1. Consent at the November 2017 Review was misinformed. We were told the review was due as they happen every 3-6   months. This was not true.


2. Consent at the January 2018 Review was misinformed. We were not told that the decision at the end of the review would be given in contravention of the National Framework for NHS Continuing Healthcare.


3. Consent was not given for an additional review that was undertaken in our absence and without our knowledge by a senior manager.


4. West Hampshire CCG admitted that, in the November Review, the National Framework had not been followed, assumptions were made that had a negative impact on judgements and a new review had to be carried out. The CCG are still using the November Review report as a valid document. This is contrary to The Data Protection Act 1998.

Failures Admitted by West Hampshire CCG


Through the response letters to our complaints and the Local Resolution Meeting, the CCG have admitted to numerous errors since the start of the current review process.

​1. ​Failure to follow the National Framework for NHS Continuing Healthcare.

2. Failure to give the correct outcome at the end of a review.

3. Failure to prepare properly for a review.


4. Failure to comply with the standards of conduct advocated by West Hampshire CCG.

5. Making erroneous assumptions that impacted on assessments.

6. Errors on the review report from April 2017.

7. Failure to comply with The Care Act 2014 in regard to carer's assessments.

8. Failure to answer all aspects of a complaint.

9. Trying to plan an MDT while a complaint was in process.

10. Multiple communication errors.

11. Failure to read supporting documents from clinical experts.

12. Failure to refer to previous Decision Support Tool and previous reviews.

13. Failure to have a consistent review process.

14. Failure to provide adequate information prior to review.


Despite all these errors, at this time the CCG are still planning to go ahead with their original outcome. We continue to contest this.

Unresolved Issues

Whilst it appears that the CCG have accepted their failings, there are many that remain unresolved.

1. We believe that there was no legal basis for a review in November as we had one in April. We have received five different reasons for the review. On 4 September 2019, CCG came up with new reason for the review - no record of the care package as I described it and a recollection that care agency said they were only providing driving and cleaning services. The first point is a data protection breach and I even provided a copy of their records showing the nature of the package. The second point is not evidenced and is refuted by the care agency.

2. The November Review identified a Primary Health Need. However, without any further evidence, the Case Coordinator changed the outcome to MDT as we would appeal any reduction in the package. The change in outcome has not been justified.

3. The use of 'assistive technology' was only mentioned by the Case Coordinator to attempt to justify an MDT. However, the use of such technology (which experts have said is not appropriate in our case) implies a risk of severe harm. We await the CCG's response to why they feel it doesn't imply this.

4. We gave our views that the November report contains false and misleading information, as well as misrepresentations and omissions. We have a recording of the meeting that proves our case. We await justification from the CCG why they feel the report is an accurate statement, when they have already accepted erroneous assumptions and that information was ignored.

5. We have asked the CCG to explain the following contradiction - they accepted that in the November Review "assumptions were made which impacted on the way in which the altered state of consciousness domain was assessed" but the operational management team felt "that an accurate portrayal of needs has been presented".

6. We raised our concerns about the November Review on 10 December 2017 but the CCG have not been able to state when they acted upon these concerns. There has been no evidence that anything was done before the Local Resolution Meeting in February 2018.

7. The CCG have yet to justify legitimately why it believes it can accept the January Review outcome of MDT when it has been agreed that it was the wrong outcome. They have stated an additional review was done but it was without our consent or knowledge.

8. We await decisions on the written views of two domains which do not reflect the conversation in the January Review meeting.

9. They have yet to explain why they have accepted a change in judgement, by the January Case Coordinator for one domain, after the meeting.

10. The CCG have yet to explain why rationales have not been included for the recent decision for MDT.

11. We are awaiting to find out what the actual process for a review meeting is, having had three different types of review in nine months.

12. The complaints policy has not been followed in many ways. They have yet to enquire into the nature of of concerns about this.

13. We sent a confidential letter to the Chief Officer of West Hampshire CCG regarding issues with two people involved in the case. The only response we have had to it was from one of the individuals stating they would look into it. We are awaiting to find out if the Chief Officer received the letter.

If and when these issues get resolved, we will update this page.

Update - The CCG refused to investigate a complaint regarding their complaints process. We conducted a Subject Access Request in order to obtain answers to questions that they refused to answer. We submitted a further complaint regarding data protection issues. The response had major errors, misinformation, omissions, and opinions with no evidence to back them up.


We also have provided evidence of tampering of documents by the CCG. The evidence they have provided completely contradicts their assertion.

We continue our battle but are very close to taking the CCG to court.