NHS Continuing Healthcare

Posted on May 27, 2014 in NHS Continuing Healthcare

Maladministration in NHS Continuing Healthcare independent reviews and appeals – personal insights from a former appeals chairman…

A former lay chairman of NHS Continuing Healthcare Independent Review Panels (IRPs) has revealed his own experience of the maladministration he observed when working in the system.

We’ll call him Richard (not his real name).

Richard spent many years working on tribunals and government committees before working on health funding appeals.

His experience with health funding appeals was not limited to Continuing Healthcare Independent Review Panels, but that did form a large part of his work.

What makes Richard’s position particularly interesting is his experience on both sides of the fence. He was in the unfortunate position of having to appeal against a decision to remove full NHS Continuing Healthcare funding from his wife. She was in a nursing home and has, sadly, since died.

Continuing Healthcare funding decisions made without the decision-makers

She received NHS Continuing Healthcare at her first funding assessment, and again at a further review. But, at the following review the assessor told Richard that his wife ‘no longer qualified’ for NHS funding.

However, the assessor had made up his mind about this before an NHS decision-making panel had even met. It was a clear attempt to remove funding for the purpose of protecting NHS budgets, yet without going through the proper process.

Richard’s wife had terminal cancer at the time, and yet the NHS assessor effectively said she was not their responsibility.

Continuing Healthcare paperwork non-existent

Richard requested copies of the Decision Support Tool notes (assessment notes) from the two previous Continuing Healthcare reviews. He also requested the written details of the most recent decision. He never received the first two – and he received the last Decision Support Tool only when he said he would appeal.

He had wanted to see the first two for purposes of comparison – so he could ascertain exactly how the NHS thought his wife’s needs had lessened. The NHS wouldn’t allow him to see them. Richard felt that this was almost certainly because it would quickly become very obvious that her needs had not lessened at all.

After Richard requested the previous notes, and his request was refused, the assessors instead suggested a further review but with a more senior member of staff. Richard refused to agree to this unless he could see the previous notes. The notes were never forthcoming.

It became clear that the assessor’s ‘recommendation’ of ineligibility had just been rubber-stamped by the decision-making panel, and yet the panel could not supply a proper written rationale for their endorsement. Decision makers have to provide reasons. Richard realised they had not actually discussed the review notes at all – probably just glanced at them and agreed – and yet the panel did not know anything about his wife’s case.

This kind of maladministration in NHS Continuing Healthcare appeals by NHS assessors and decision-makers will come as no surprise to the thousands of families in the UK currently facing the same situation.

Continuing Healthcare assessors backtrack to cover up flawed practice

Richard appealed the withdrawal of his wife’s funding, and at this point the assessors were aware of Richard’s background in Continuing Healthcare funding appeals.

This made it all the most interesting that Richard was then informed that Continuing Healthcare funding would be completely reinstated for his wife during the appeal.

What was even more interesting was that her Continuing Healthcare funding then continued right up until her death five months later – with no further contact, pressure or hassle from the NHS.

This course of events gives the impression the assessors had acted wrongly – and knew they had – and they didn’t want to be found out. They had refused to provide the previous review notes for comparison, because they knew they couldn’t justify their latest decision to withdraw funding.

It is, of course, good news that Richard’s wife was able to keep her funding, but the actions of the assessors and decision-makers are highly questionable – to say the least.

Even with his experience, knowledge and background, Richard found the whole Continuing Healthcare process so difficult.

Here are some of his observations about maladministration in NHS Continuing Healthcare appeals:

  • The biggest problem of all is the difference between healthcare and social care needs – and this seems to be left open to subjective interpretation by assessors. Even doctors don’t seem to know where the difference lies. Social care needs are, however, clearly described in the National Framework for NHS Continuing Healthcare (page 50 paragraph 2.2 and 2.3).
  • Many care homes don’t want to carry out Continuing Healthcare assessments or get involved in appeals, and there are clear financial conflicts of interest amongst different parts of the care system. If Continuing Healthcare is awarded to someone in a care home, for example, the care home is paid less than if the person pays for themselves.
  • There’s an enduring budget motive on all sides – and so funding decisions are not impartial at all.
  • The NHS assessor carrying out an assessment will take a view of eligibility (whether correct or not), and their colleagues will not want to disagree with that. It means the flaws and maladministration are continually perpetuated, leaving families to face an appeal process where the decision-makers also fail to explore the case properly.

Inconsistencies in Continuing Healthcare appeals

Richard also recounted some of the inconsistencies he observed when chairing NHS Continuing Healthcare independent review funding appeals himself:

  • Even with the same basic appeal procedures set out in the guidelines, different geographical areas handle appeals very differently. Some allow the family to attend and speak, while others restrict the amount of time a family representative can speak for. Some areas insist it is a paper exercise only and, as a result, all discussion is held behind closed doors without the family knowing what is being said. Some cram four or five appeals into one day – and on paper only – which raises questions about whether they actually read any of the case notes.
  • The appeal panel members always have prior access to medical reports, but as the previous points suggests, there may not be time to read everything. Also, there are sometimes gaps in such records, they can be substantial in volume and also often couched in medical jargon.
  • There needs to be an independent medical professional present at an appeal, relevant to the needs of the person who has been assessed. However, this person is not part of the actual decision making. In some cases there may be a specialist senior medical person – and they should be from a different region.
  • There is a senior member of the relevant NHS Trust present (it could be a senior nurse) to highlight why funding has been refused. However, in many cases this nurse has never met the person being assessed or the family. Instead, they rely on the information from the (potentially flawed) assessment and medical records.
  • The whole system is complicated – and so bureaucratic.
  • It is absolutely vital for the family to attend an appeal to have any chance at all of success.
  • It is all about procedure and not about the person; however, procedure is often ignored.
  • The National Framework guidelines are not thought through very well at all.
  • Representatives from the health and social care authorities do not always understand what they are doing in reviews, and yet they are being paid to be on these decision-making panels.
  • Assessors and review panel members have generally never met the person they’re assessing. Many have not even read the appeal documentation. They are there to make up numbers so boxes can be ticked – never mind the outcome for the vulnerable individual in care who is supposed to be at the heart of all this.

During his time working with appeals, Richard saw many resignations, and at times there would be no appeals going through at all, and families would have to wait months, sometimes years.

His own view about paying for care when there’s a dispute about the funding decision is that funding should continue while an appeal is ongoing; otherwise, leaving someone with no funding is a very cruel thing to do.

He has three tips for families going through a Continuing Healthcare appeal:

  1. When putting forward your appeal, ignore those areas where there is agreement about the scores and health needs.
  2. Focus only on the areas of dispute. This may sound obvious but…
  3. Given all the above, it’s important to challenge and pick on specific points of dispute and force assessors and members of the panel give you proper and specific answers to those points. Keep asking about those specific things until you get an answer. Don’t give up.

What’s your own experience of Continuing Healthcare independent reviews?

At Care To Be Different we’re very grateful to Richard for sharing his insights and observations.

If you have a funding appeal in progress, you’ll no doubt have picked up on Richard’s point that funding was reinstated once he’d said he would appeal and the assessors knew his background. From all the reports we receive from families it’s very apparent that having funding offered during an appeal is highly unlikely to happen to ‘ordinary’ people.

This point makes it all too clear that the assessors in Richard’s case knew they had acted wrongly and were trying to cover this up by reinstating funding – and so avoiding having to provide paperwork that would have exposed the maladministration.

Most people have their funding stripped away regardless of the illegalities of the assessors’ actions and decisions. It also seems absurd that any appeal panel could think it transparent, fair or just to rush through appeals on paper without involving families.

The original assessors often seem to be junior in their rank and experience, and the mistakes they make are then simply rubber-stamped.

Many families also suspect that one member of an assessment team or appeal panel won’t want to overrule or contradict another, and so the maladministration goes unchallenged.

Plus, if the nurse from the local CCG has never met the person being assessed and has no hands-on experience or observation of their actual day-to-day care needs, there is huge potential for the original mistakes in the funding decision to simply be compounded.

What’s your own experience of the Independent Review Panel process for your relative?



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