What to expect when you attend a Continuing Care assessment

You might find it a daunting prospect attending a Continuing Care assessment on behalf of a relative, especially when the whole process is new to you. Many people ask us what will happen when they get there. These points will help…

Having a relative in care can be a very emotional and stressful time, and the prospect of having to sit in a room with a number of assessors and argue a case for funding is not always appealing. You probably won’t have received much, if any, helpful information from the health and social care authorities, and if you’ve already experienced bad practice or even intimidation by health and social care employees – who may have told you there’s no chance of success – the outcome of the assessment may already feel like a foregone conclusion.

However, you can do a lot to change the odds in your favour and this article shows you how.

(We’re looking here at the full Decision Support Tool, not the Checklist assessment.)

• The assessment usually takes place wherever your relative is currently based, i.e. a care home, their own home or in hospital.

• At least two, but preferably three or more, people will form a ‘multidisciplinary team’ (MDT) of assessors: this will include one person from the NHS Continuing Care Department and one from the local authority/Social Services. It is likely also to include a nurse from the care home who is directly involved in your relative’s daily care every day, or a live-in carer from a care agency. If your relative is in hospital, there may be Ward Sister or Lead Nurse present.

• There may also be other people, for example someone from the Mental Health Team (if your relative has cognitive, behavioural or psychological/emotional health problems), or other health professionals involved in your relative’s care.

• Essentially the MDT must include input about all aspects of your relative’s day-to-day health and care needs and risks, and must draw on information from key professionals involved in their care. Without this input, the assessment is unsafe. There must be people involved in the assessment who have direct knowledge of your relative’s needs.

• Prior to the assessment, find out who will be attending, so that you’re prepared. If you find there are different people in the room when you arrive, you can complain.

• You can take someone with you for moral support, to be an extra pair of ears and eyes for you, and/or to make notes from a procedural point of view, i.e. are things being discussed openly and do things seem transparent.

• You will be given a specific time to attend. However, one or all of the assessors may get there earlier to get a look at your relative – so get there early yourself. They may spend just a couple of minutes observing your relative – and drawing (often false) conclusions from this cursory glance. They may also talk to care staff to get a quick (and perhaps very superficial) summary of care needs. The things care staff say can be the biggest source of frustration for families; care staff will want to show that their care is good and that your relative is ‘absolutely fine’ or ‘doing really well’ or ‘settled and happy’. These overly positive words (if they are) will almost certainly get recorded in the assessment notes and will count against your relative. If you can talk to care staff in advance, or at least to the person you know will be in the meeting with you, tell them what the assessment is for (as they probably won’t know) and make them aware of the impact of their words.

• At the MDT, probably the person from the NHS, will take the lead in the assessment and will take notes throughout. It’s a good idea to sit next to this person, and don’t be afraid to ask to change places with someone to make this happen.

• The main assessors may never have met your relative, something that families find hard to believe, and so in the assessment you need to put forward all the relevant health needs information you want to be considered. This is why preparation is key. You may be the only reliable source of information about your relative.

• Go into the meeting with a confident air, even if you have to fake it. Look serious, even if it’s not your usual nature. Remain detached from the assessors and be wary if they seem overly friendly. This might sound cynical, but it’s easy to believe an assessor might be on your side, when very often nothing could be further from the truth.

• State at the beginning of the meeting that you expect things to be conducted in accordance with National Framework guidelines, and mention anything you know of that has already been done incorrectly since your relative has needed care.

• The assessors should all introduce themselves. If they don’t, insist that they tell you who they are, what their job is, and what is their role in the assessment.

• Ask each person how familiar they are with the National Framework for NHS Continuing Healthcare. Also, ask them how familiar they are with your relative’s health needs. The more the assessors realise you know what’s what, the better. If they are obviously lacking in knowledge, make a note of it and say that that you consider the assessment to be null and void on that basis, and make sure this gets written in the notes. Sometimes ‘assessors’ are sent to carry out Continuing Care assessments with barely any knowledge of the legal framework or Department of Health guidelines surrounding the process. Some have never even read the Guidelines.

• Be wary if the care home nurse at the meeting is a member of the night staff, as he/she will generally only see your relative asleep and may not be able to contribute much of relevance. If you object, make sure it’s written in the notes.

• After these preliminaries, the assessors will look at each of the 12 care domains. You can input anything you want in terms of your relative’s health and care needs and risks in each domain. You may find that things are either glossed over or overlooked, or that assessors try to diminish the severity of a health need in their comments about it. Challenge them when this happens.

• Take no nonsense. If you feel anything is not right or that, for example, language is being used in a certain way to trivialise health needs, say so, and make sure it’s actually put in the notes. Sitting next to the note-taker will help. Don’t worry about upsetting anybody.

• Don’t worry about being ‘difficult’, just say whatever you want to say (politely). Don’t worry about how long it takes or about other people’s time. This is your chance to have your say. If any assessor has to leave before the end, make a note of who it was and when they left.

• Make sure the assessors also address the 12th care domain, ‘Other.

• Many people ask whether they should take a written report with them to the assessment to give to the assessors – or submit it before the meeting. If this is your first full assessment, you don’t necessarily have to do this, but many people find it beneficial to have something prepared – if only because it cements in your own mind all the points you want to make. As a minimum we would advise at least writing a list of health needs and risks in each domain (for yourself), including the nature, complexity, unpredictability and intensity of those needs, so you can make sure they are all given due consideration.

• If you do decide to write something in a format that can be given to the assessors, make sure you state in it that it is not a comprehensive summary of health needs and that you reserve the right to add additional information to support your case in due course, should that be required.

• If you’re asked to sign the assessment notes at the end of the meeting (and many people are put under significant pressure to do this) be very careful. You don’t have to sign anything. If you do sign, write next to your signature that you just attended, NOT that you agree with the outcome, nor that it is a comprehensive summary of health and care needs – just that you attended.

• The assessors cannot make a decision about funding in the meeting; it has to go to a panel. The assessors may however tell you what they’re going to recommend to the panel. Again make a note of anything that you feel is intimidating or wrong. Ask them when it will be going to panel.

• End the meeting as formally as you began it, saying you expect to hear from them shortly and that you expect to be kept fully informed and involved. You are in control.

To understand more about the Continuing Care guidelines, eligibility, the pitfalls to avoid and how to prepare for an assessment, take a look at our practical e-book How To Get The NHS To Pay For Care.