Don’t let the Decision Support Tool become a ‘tick box’ exercise

Frank O’Brien posted a comment a while ago that we wanted to share with you in case you missed it. He retells his experiences of the Multi-Disciplinary Team (MDT) assessment stage.

Frank says, that as long as you are seen to engage with the Clinical Commissioning Group so that they can complete their Decision Support Tool (DST), and go through the motions of the assessment, that will suffice for the CCG’s purposes – ie to ‘tick’ the box to say that the assessment has been carried out (properly), even if the reality is very different and the assessors did not consider all the relevant evidence. Frank feels that once the DST goes on file, it will be harder to challenge it later on, if it proves to be incorrect and misleading.

Here are some of Frank’s comments:

“It is clear to me, certainly in our case, so long as family & friends have engaged meeting the Primary Need care work then they are happy to do a tick-in-box procedure to keep it that way… So long as there is a completed DST in the file to answer any later investigation should it occur. If it did not include all the relevant evidence or the specialist clinical assessments that should be conducted for the DST that are relevant, if unchallenged, it shall be deemed a true and correct record much later.”

“So you know you are not alone, in our case they [the MDT assessors]:

1. Did not gather all the relevant evidence
2. Did not engage and gather all the relevant clinical specialist assessments for the specialist medical conditions presented
3. Did not arrange & chair a DST meeting properly with correct attendees and reasonable notice
4. Did not engage and resolve reasonable family concerns on non-compliant procedure
5. Did not appoint a distinct separate Coordinator to manage the above
6. Did not disclose the case evidence file to the family even when repeatedly requested to do so
7. Conducted a DST meeting with only a District Nurse & Social Worker as decision makers, who knew next to nothing about the individual having only spent a couple of hours with them.

The non-compliance with procedure is so grave [that] the only conclusion a reasonable person can draw is that it was a deliberate tick-in-the box decision to deny CHC funding and correct clinical help at home.”

 “…The crux of the matter, you cannot rely and trust the LA [Local Authority] and CCG to follow correct procedure is my experience, even when challenged. They ignore you.”

“The practitioners, especially the LA and CCG have their own agenda to follow. The data shows hardly any DSTs are carried out within the National Framework government guidelines timescale of 28 days. 

 In our case, 10 months of delay before DST for something that should have taken one month, and also NONE of our concerns about following the standing rules and regulations were followed either. 

 In our case, Practitioners forced the DST without me, despite our concerns and failings, which remained unresolved and the evidence file severely incomplete, I believe, [just] so the “No” recommendation would be recorded. 

 The correct relevant evidence was not gathered or correct MDT personnel with relevant credentials & expertise, were constituted either; and also most disturbingly, incorrect facts were recorded in the DST. Lies to you and me.

 If you do not have the correct recorded evidence or correct clinicians with relevant “Specialist” credentials involved, the DST just becomes a tick-box form by a Social Worker and a general young inexperienced Nurse, based on the sparse evidence. That is what happened to us… The individual’s needs are secondary to that.” 

 “Be aware from the start that you cannot trust the LA and CCG to follow correct procedure:

 (1)  A severe delay shall be instigated by Practitioners to the procedure, I believe, to wear people’s resolve down and deliberately bamboozle the procedure.

 (2)  The correct evidence shall not be gathered and recorded, because there is a risk of a ‘high’ level of need being in the evidence that attracts a cost to the CCG.

 (3)  A Coordinator (usually a Nurse Assessor from the CCG) shall either not be appointed properly, or if so, shall not put the family representative at the “centre of the process”, explain the procedure and guide you through it all either despite what the National Framework says. 

 In our case the Nurse Assessor was deliberately obstructive by: 

1. not answering calls, emails, letters
2. not performing any updating visits to the house
3. not resolving any reasonable written concerns
4. arranging visits to the house by personnel to a very vulnerable sick person, doubly incontinent and immobile without an appointment 
5. deliberately withholding the evidence file, saying [they were] not allowed to hand over the documents despite citing National Framework clause 33.1b.
6. ignoring my concerns about lack of a Coordinator,[so] I met numerous times with a senior L.A. manager at our home instead, at his behest, I might add, raising this issue & other health matters and procedural issues… which he ignored. Very misleading.”

 “Families need to understand that the LA and CCG shall obstruct National Framework correct procedure to get the “level of need” decision required as they are in control of procedure, so do not gather the correct relevant evidence, and have the power of DISCRETION when performing the protocol and making a decision.

 Unfortunately if you do not understand this, Practitioners shall either wear family down to give up, or cause an unreasonably long delay during a vulnerable time of life when the help & support is needed urgently or the individual dies.

 If the file has all the correct relevant evidence the LA & CCG find that more difficult to deal with, so in my view, you have to gather it yourself.

 That’s why the correct evidence in the file is missing in most cases, so a “No” decision can be awarded and the case closed.

 Great site, keep up the great work.”

Frank O’ Brien

Our comments:

Sadly, Frank’s frustrations and criticisms of the CHC assessment process are not uncommon.

Attending a Multi-Disciplinary Meeting can be a daunting and emotional experience, at a time when you are vulnerable, worried about your relative’s health and the need to secure CHC Funding.

According to the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, the assessors should have received training on the assessment process and how to complete the DST, and also had involvement in your relative’s care. If not, you have to question the point of undertaking the MDT assessment at all and the validity of its outcome, and whether it is truly representative of your relative’s actual healthcare needs.

Read our “6 Essential tips” in our blog: Attending the Multi-Disciplinary Team meeting – some useful guidance, below.

If you feel that the process has not been carried out fairly or thoroughly by the MDT assessors, you must raise your concerns immediately and have them recorded in writing.

We generally recommend that you do not counter-sign the DST, and nor should the assessor insist or bully you into doing so. Otherwise, you may find that the CCG refer to your signature as concurring with the contents of the DST, and therefore prejudicing your chances on any appeal.

Remember: scoring against the various Care Domains in the DST is entirely subjective and therefore open to misinterpretation, and potential abuse.  For example, there may be some key additional evidence that has not been considered by the MDT assessors, or which has been wrongly interpreted, or even recoded inaccurately within the DST – all of which could present an entirely different picture of need if reconsidered.

The CCG cannot possibly provide a comprehensive and fair assessment if the basics are not adhered to, as appears to be the situation in Frank’s case. If the assessors are not familiar with the individual, have little regard for the care records or show no interest in hearing from the family, or have pre-conceived ideas that the individual won’t qualify for CHC, then the DST will become a tick-box exercise, with the assessors just going through the motions in order to complete the DST.

Unfortunately, too many ‘have-a-go’ families attending an MDT are not sufficiently knowledgeable about the CHC assessment process, what is required of them to succeed, or the level of detail and evidence needed to award obtain CHC Funding. As a result, many are left perplexed or bamboozled, and become frustrated by the whole CHC process.

Remember: you can are entitled to get advocacy help to oversee the assessment process and ensure the MDT assessors don’t try and pull the wool over your eyes, and will be there by your side to present your relative’s case robustly! If you want help visit our one-to-one page.

Our top tips:

• You need to be well prepared in advance to be able to present your relative’s case for entitlement to NHS Continuing Healthcare Funding in a coherent, calm and logical manner.
• Get hold of the care home records in advance and look for key entries and changes in your relative’s health needs which support your case for eligibility.
• Look for obvious clues in the care records. As an example, certain anti-psychotic medication may clearly indicate a high/severe nature and complexity of the needs.

You know your relative and are best placed to argue their case. Whereas, like in Frank’s case, the CCG’s assessors may only have had a brief cursory look into the background of the individual’s healthcare needs prior to the MDT (if at all) or may not be involved in their care. Remember, they are supposed to be well trained in the CHC assessment process and had some prior involvement in your relative’s care.

Why not leave a comment below and tell others of your experiences of a botched MDT assessment…

For further information on the subject, read our blogs:

• When is the Continuing Healthcare Decision Support Tool completed?
• Attending the Multi-Disciplinary Team meeting – some useful guidance
• What Happens At The Multi-Disciplinary Team Meeting?
• Care notes and NHS Continuing Healthcare: inadequate evidence?
• What Is The Role Of The MDT Coordinator?
• Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
• 17 untruths about NHS Continuing Healthcare funding – Part 1

Care To Be Different offer lots of FREE information and resources. If you are new to CHC or going through the assessment process, browse the articles on our website at your leisure.

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