The first failing, and it is just the tip of the iceberg
To tell the story of our experience of the hell of NHS Continuing Healthcare over the last three years, it seems pertinent to start at the beginning. With so much to tell, it will be very easy for me to go off at tangents so please excuse me if I digress on occasions as I share my story over the coming months.
My wife has epilepsy. Unfortunately, due to the peculiarities of it, her’s is particularly life-threatening. As her husband, I have loyally and without regret supported and provided all the care possible. If I didn’t need to work to bring in an income, life would be much easier. But work I must, so we need carers to cover during that time.
As a senior leader in education, my hours were varied - the joys of evenings and weekends spent at Governor meetings, Parent meetings, PTA events, Induction evenings, pupil discos, etc. My typical working week required 60-65 hours of care for my wife to cover my time at work. Some weeks more, some weeks less. I used to be an avid hockey player and coach. That is all gone now to minimise the need for carers – as nice as they are, my wife yearns for independence from them. At least I had the school holidays where I would work less.
The care package was set up in 2009 with flexibility in mind. To ensure the package worked, an annual budget was set based upon an average of 55 hours per week, 52 weeks a year. This enabled me to use more hours in term time and fewer in the holiday periods.
As far as we were aware, this all worked perfectly for eight years. We have the records to show the flexibility in the package being used throughout that time. We had an annual review of the package in April 2017 and all was fine.
A few months later we started to get rumblings from the care agency about the way in which they were being paid by West Hampshire CCG (WHCCG). This resulted in a meeting in early September 2017 between myself and the director of the care agency. I was informed that WHCCG would not allow the care agency to bill for more than 55 hours a week and ‘banking’ unused hours was complex. As such, the care agency were going to need to limit the care provided.
Naturally, I pushed back and offered to write to WHCCG. I did but they failed to respond. So I wrote again in October following a further conversation with the care agency. Communication then started in earnest.
23 Oct 17 – “I have spoken with CCG today and the trouble seems to be the contract, do you have a copy of the actual hours Rachel has, agreed by CCG.” (Director of care agency email to me)
24 Oct 17 – Nothing on the system about arrangement “55hours during term time and up to 79 outside term time”. Request for cost breakdown of current care package and proposed increase. (WHCCG email to care agency)
HANG ON. That was never the care package. And we were not asking for an increase.
24 Oct 17 – “When was packaged reduced?” (Email from me (PAJ) to WHCCG)
25 Oct 17 – “As far as I am aware there is no change or changes to the current care package provided.” (WHCCG email to PAJ)
At this point, my family and I were on holiday on the remote desert island of Tenerife. At least it is remote in terms of my access to the records I have regarding my wife’s care package details. This communication was already stressing me out and ruining the holiday as I smelt something rather rotten with what was being said. How could they not know the details of the package? What was going on? The next thing we know…
26 Oct 17 – “I would like to organise an urgent review meeting of this care package and my manager has already instigated this process.”(WHCCG email to PAJ)
Naturally, we questioned this considering we had a review just six months earlier.
27 Oct 17 – “Following correspondence from your husband, our Case Coordinators have asked me to arrange a meeting to review your package of care.” (WHCCG email to PAJ)
We responded the same day. “We trust that the review is simply to discuss the hours required to provide suitable care provision.”
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 is now due.” (WHCCG email to PAJ)
27 Oct 17 – “We do not understand why a full review is required when one was done in April.” (PAJ email to WHCCG)
By this point, my holiday was destroyed. How could this be happening? Nothing had changed yet they are calling for a review on apparent basis that we were using more hours than they had a record of.
Then the misinformation (lies?) started.
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)
Two serious points need to be made here:
Point 1 - CCGs are legally required to have “regards to” the National Framework for NHS Continuing Healthcare. This means that in developing their policy for the implementation of individuals rights to Continuing Healthcare, they must consider the framework. The framework says reviews should be at least annual. West Hampshire CCG’s policy states:
“12.1 Case reviews will be undertaken for individuals no later than three months following the eligibility decision and thereafter on an annual basis, unless a change in need or circumstance identifies an earlier review is required.” (WHCCG Joint Operational Policy)
WHCCG reviews are annual. Not every 6-12 months.In order to demonstrate that there are reasonable grounds for a review, WHCCG must be able to justify the decision in accordance with its policy. This enables the patient/family to have the opportunity to question the legitimacy of the decision and decide whether he/she/they consent.
Point 2 - We were not asking for an increase in the package of care. I emailed WHCCG on 31 Oct 17 to refute the notion of our alleged request and went on to describe, in detail, the agreed care package. Despite being away and having to make assumptions around interest rates for the last eight years, my description was spot on.
31 Oct 31 17 – “I have passed your email to Roy and the duty team to look into, as they will be best to advise on the other points you have raised.” (WHCCG email to PAJ)
An internal WHCCG shows that Roy, the case coordinator, was asked to communicate with us about our email. For some unknown reason, Roy did not contact us and the review went ahead on 8 November 17. But we were not done yet. And nor was the misinformation (lies?).
After introductions at the start of the review meeting, I immediately raised the reasoning for the review (the erroneous belief that we were asking for additional hours). The director of the care agency was present and backed me up on this. She went on to state that further discussion with the CCG meant that the payment issue between the two had been resolved.
But Roy came out with something very different. He said it had nothing to do with billing or hours. He said that reviews are done every three to six months. He even stated that reviews used to be done on an annual basis but “they kind of like stopped that now.”
This is totally wrong. The policy for WHCCG is as stated above – annual reviews unless circumstances change. Naively, we assumed that a medical professional would never misinform (lie to?) us. As such, we believed him and carried on with the review.
It may be considered a minor issue but this has huge implications. Data Protection law is very clear. Medical data is sensitive and carries extra safeguards for processing. WHCCG did not inform us of the real reason to conduct the review. If they had, we would have been able to provide the evidence of the details of the care package which we obtained from them in the first place. Whilst they can request a review, it would be discriminatory and a breach their own policy to enforce a review on an individual in contravention of their policy. We were within our rights to say no and / or withdraw our consent to process sensitive data when it was not required. We were denied this right by being misinformed.
I have raised the issue of being misinformed with WHCCG. This all happened over three years ago and they have still not directly commented on the statement of Roy claiming that reviews are done every three to six months. I will go through the debacle of the subsequent ever changing reasons given by WHCCG for the review in my next post. I will finish off this one with the response received from Mike Fulford (Chief Financial Officer) in June 2019 to our assertion that they had no evidence of valid consent as required by the then Data Protection Act.
“On 13 April 2017 Mrs Austen-Jones signed a consent form which includes agreement to all subsequent reviews following the initial NHS Continuing Healthcare Assessment and includes consent to information being gathered, collated and shared as part of the NHS Continuing Healthcare process. This consent form was shared with you as part of the subject access request. Mrs Austen-Jones had not at the time of the reviews withdrawn her consent. In addition both you and Mrs Austen-Jones participated in the review meetings and did not raise any objections at the time.”
OH DEAR. What I find particularly disturbing is that this appears to be a negligent comprehension of the events that took place and basic data protection law, or a deliberate attempt to manipulate events in an attempt to defend inappropriate actions.
1 – A consent form from April 2017 does not demonstrate that we were appropriately informed in November 2017. Under the Data Protection Act, individuals have the right to withdraw consent at any time. If they are misled, they are denied the appropriate opportunity to prevent processing.
2 – The form may have been shared with us but the form provides no evidence that the consent obtained in November 2017 was informed.
3 – Consent was not withdrawn because we were misled. We have told WHCCG this on many occasions but, as stated before, they have consistently failed to even acknowledge what we were told by Roy and the office team before him.
4 – Since when was participation evidence of informed consent?
The events mentioned here are just the tip of the iceberg. And, because of my professional background, I can evidence every statement I have made. I even have recordings of the review meetings that WHCCG seem very keen to ensure remain private. They told me this week that, “You did not take consent from those at a meeting to record their data or make it clear you would be recording and accordingly we do not consider you were entitled to do so.” Data Protection Act 1998 Section 36 does allow me to record meetings, even if done covertly. NHS Protect backed up this position in May 2016. (Note - The recordings were made prior to Data Protection Act 2018, which also always us to record meetings covertly.)
I am sharing my personal story to bring to life the real challenges people face when trying to obtain / keep their legal right to NHS Continuing Healthcare. And there is so much more to tell and much worse failings to expose in my case. Please visit nhschcscandal.co.uk to see more about the campaign being led by Rear Admiral Philip Mathias for a judicial review into the national NHS Continuing Healthcare scandal. If you wish to and are able to, you can donate to the Rear Admiral’s campaign via the website.