Part 1: Avoid common mistakes and pitfalls when appealing the MDT decision

Following on from our recent blog Dissatisfied with your MDT outcome? Consider these potential grounds for appeal… now we tell you how to appeal and give some helpful tips.

Preparation is the key. However, you can’t make someone eligible for NHS Continuing Healthcare Funding (CHC) if they simply don’t meet the criteria.

There is an established process for appealing and there are some pitfalls to avoid.

Unfortunately, too many families make the common mistake of rushing head-long into their appeal, whether out of frustration or anger at the MDT’s negative outcome, or in naivety, thinking they must lodge their appeal immediately to show defiance and take a stand against the Integrated Care Board’s (ICB) wrong decision to refuse their relative CHC Funding. That can be a huge downfall.

Premature notification to the ICB without preparing your appeal case in advance and having all your ‘ducks lined up’, can be a naïve and very costly mistake – ruining many a good appeal.

After the MDT assessment, the ICB is expected to write to you within 28 days formally setting out its decision and providing you with a copy of the Decision Support Tool (DST) and rationale.

If the decision is negative, i.e. refusing an award of CHC Funding, then the letter also should state that you have 6 months to appeal the negative outcome and confirm steps for doing so.

Watch out! Sometimes, ICBs get it deliberately wrong, and will insist on a much shorter period to lodge your appeal – say within one month. This is perceived as an unfair tactic to pressure vulnerable families or put them off from appealing. There is simply no excuse to impose a shorter timescale than the standard 6 month period, which is statutorily preserved.

So, if the letter states any lesser period than 6 months, you must tell the ICB that you will not be pressured into complying with their unilateral unlawful time limits and that you will lodge your appeal within the usual 6 month period (assuming you are going to appeal). Don’t be bullied! You will need this time to prepare your appeal diligently and carefully to have the best chance of success.

Pre-Covid, once notified by the ICB of a negative decision, it could take 18 months (sometimes longer!) to get an appeal date. Covid just added further delays to compound the existing problem and created large backlogs of cases sitting in a pile waiting appeal. But, it seems in more recent times, perhaps after considerable pressure from the Government to catch up and process appeals much quicker, we have noticed a dramatic increase in the speed in which ICB’s are turning appeals around.

Most ICBs are much more efficient, astute and proactive than ever before. Once you trigger an appeal, many ICBs will press the ‘appeal button’ and steam ahead immediately, putting you on the back foot. If you’re not actually ready, then that might just be tough luck as the ICB may not be willing to be flexible and accommodate any change of date. The current attitude is more along the lines of: “You wanted an appeal, well here it is! See you there!” So, before you lodge your appeal, make sure you are fully ready and don’t prejudice your own case.

Some ICBs may be more flexible than others depending on the reasons why you want to adjourn the appeal meetings. If the proposed date is inconvenient, then say so immediately, but you’d better have a good reason.

Remind them that the process is intended to be ‘person centric’ – putting the individual at the heart of the process. You are entitled to be present at the appeal meetings, and indeed we strongly recommend you are – whether representing yourself or as an advocate for your relative. So argue that the meeting(s) shouldn’t go ahead without you and, to do so, will be an abuse of process.

However, don’t be surprised if the ICB says, ‘No’, the date is fixed and will proceed regardless.

Appealing a negative MDT decision is to the same local ICB who just rejected your relative’s application for CHC Funding – hence it’s called Local Resolution.

Lodge your appeal in writing as directed in the outcome letter (usually this means writing to their NHS Continuing Healthcare Department at the ICB). Each ICB will have its own local resolution process and timescales. More efficient ICBs will now try and catch you off-guard and give an early meeting date.

The Local Resolution appeal process can be thought of as a 2-stage process.

First there is a preliminary informal meeting, often called the “Clinical Call” – a two-way discussion at local level, with a representative of the ICB, which aims to resolve  your concerns, in the hope you will drop your appeal. This is a preliminary opportunity (which used to be optional) for you to have your say and explain why you disagree with the finding of ineligibility. We hear anecdotally that some ICBs had previously imposed strict and unrealistically short timescales (e.g. 20 minutes) to discuss matters; and if you couldn’t persuade them to change their decision in that time, the original negative decision stood and you were shown the door! That was simply inadequate and this unfair process backfired, as it merely provoked a plethora of appeals to NHS England, costing the ICB more time and resources.

Generally, this preliminary meeting, albeit optional, was considered a waste of time and breath and was often skipped. It left families feeling hugely frustrated because the chances of persuading the ICB’s representative(s) to recommend changing their own decision were slim at best, even where it seemed obvious to all (including the NHS representatives) that the negative decision was so blatantly wrong. Moreover, those representing the ICB at this ‘talking shop’ rarely had sufficient authority to alter the decision anyway. So, it simply became an administrative step to say the ICB had engaged with the family, demonstrated an air of transparency and co-operation, and done their bit – box ticked – even if most families had no idea what was going on and whether the ICB’s rationale for its decision was poorly reasoned or not. Ultimately, the negative decision still stood; no award of CHC Funding. Job done, and the ICB’s budget protected.

However, we now understand that some ICBs have made this a mandatory step. So, we suggest that you attend with an open-mind but don’t be surprised if you get railroaded into a corner and the decision remains unchanged.

The second stage of Local Resolution is a more formal review by the ICB’s appeal team, with a reconsideration of the Care Domains and 4 Key Characteristics. To improve chances of success, you should provide detailed written submissions, setting out the ICB’s failings and positively asserting your relative’s needs in the Care Domains, and setting out your argument for eligibility under the 4 Key Characteristics.

Some ICB’s now use the Local Resolution stage as a mini version of an appeal to NHS England’s Independent Review Panel (IRP). The Local Resolution Panel may sit with 3 or more people from the ICB at different levels; some ICBs also invite a representative of the Local Authority (usually a Social Worker). The rationale being that devoting more careful scrutiny to a local appeal might cut down on the number of cases being appealed to IRP (and improve their reputation) and save the ICB time and resources – as well as NHS England having to consider valid appeals.

A full written record will be made of the Local Resolution meeting and the ICB will decide on the next steps – either to uphold its original negative decision or to overturn it and award CHC Funding.

Therefore, the Local Resolution meeting presents your first real opportunity of securing a successful appeal and, as such, needs careful thought and planning if you want to try and maximise your chances of success. If you succeed here, you can secure much needed CHC Funding for your relative and stop them from paying huge monthly ongoing care fees. The savings can be simply enormous!

So do give your appeal the attention to detail it, and your relative, deserves, otherwise all their hard-earned savings, assets and inheritance planning could soon rapidly disappear to pay for their daily care needs.

Look at the MDT’s Decision Support Tool (DST) and the areas where you believe your relative’s needs have been understated. Identify any significant needs you believe have been overlooked, minimised or omitted. Refer to verifiable, dated evidence wherever possible. These are the key battle-ground areas you need to challenge on appeal to help build up an overall picture of greater care needs than portrayed by the ICB’s DST at the MDT.

Ask the ICB for a copy of all the records the MDT considered when completing the DST.

You need to get hold of all your relative’s care home, GP and treatment records, and consider the nature, intensity, complexity and unpredictability of the care required to meet their needs.

Tip 1: Look at what entries the NHS assessors have recorded in their DST and compare them with the records you have. Are the entries fully recorded as written, or merely paraphrased, or summarised, giving a misleading or inaccurate reflection of the actual care provided?

Tip 2: Look for missing entries that have been omitted from the DST under each Care Domain. What may seem an irrelevant or an innocuous entry might actually be repeated (or variations thereof) which, if included, could present a much higher level of overall need due to frequency (intensity) or complexity to manage it.

Tip 3: Think about what other information you know about your relative’s care needs, which isn’t recorded, or adequately recorded, in the records, that would assist?

Often due to pressure of time, desire, language skills (or skeptically to cover up shortcomings), the care home records can be woefully incomplete. That can work against you as what is expressly stated in writing on paper tends to prevail over what is unwritten. Poor record keeping can ruin a good appeal case – unless it is obvious that the medical conditions presenting require more intense and complex care than is stated.

June’s feature on flawed CHC assessments and the importance of good record keeping

Appealing is a strenuous task and can easily consume many hours of your time. We would recommend that you seek expert help here to collate all the relevant records, review them in detail in consideration with the DST, and then draft your written appeal submissions. The same professionals can also act as your advocate and represent you at the Local Resolution appeal meeting to ensure continuity and that all your arguments are heard, and the best case is put forward. Some professionals will offer to draft the appeal submissions for you, so you can use them to do your own advocacy at the appeal, if you prefer.

Despite the CHC appeal process supposedly being devised for the lay person to do themselves (because it’s not intended to be an adversarial process), and the NHS National Framework stating it’s your choice whether to have an advocate represent you given the process is to focus on the individual’s needs – make no mistake, it can be often quite contentious and confrontational – and the ICB’s representatives will invariably fight their corner to uphold the negative decision made by their colleagues.

What’s more, the chances of understanding what is needed to secure CHC Funding, and knowing how to go about the process, requires some mental gymnastics and can be very frustrating. This is not a ’Judge Rinder’, reality show where contestants turn up to argue a trite dispute over a £100 loan (or was it an outright gift?). The stakes are far higher. We are dealing with potentially being awarded a fully-funded free CHC care package, paid for 100% by the NHS, to cover the cost of all your relative’s health and social care needs, including their care home accommodation. Some care homes are charging £20,000 a month! So, we repeat…preparation is paramount.

Whilst some families do win on appeal on their own without representation, you really have to know how to ‘play’ the NHS’s CHC game and get to grips with the National Framework to have the best chance of success. Even then, there is just bland guidance but no practical tips to help families understand how to go about winning and the level of detail and knowledge required.

Our book “How to Get The NHS To Pay For Care” gives practical tips and guidance and you can read many more articled absolutely free on our Care To Be Different website.

We have been contacted by many families over the years who have tried and failed spectacularly against the well-oiled ICB appeal machine. We estimate the percentage of those who go it alone and succeed, is very low.

If you don’t succeed at LRM, and you remain dissatisfied with the outcome, you then have another 6 months from the negative outcome decision to appeal to NHS England. This is the first appeal to a truly independent body.  Read our next blog in Part 2 coming soon to find out more…

If you have had a bad experience at Local Resolution, share your comments with others below…