How keeping a diary helps in a care funding application and appeal

Published 27/06/2013

Please note: This article was published prior to July 2022, and some information may be outdated.

Your care funding application and appeal is much easier with the right notes to hand.

When you’re acting on behalf of a relative who needs care – whether that care is full time or otherwise – there are so many things to think about.

You’re probably visiting your relative regularly, making sure their care seems appropriate, resolving any problems, making sure they have the things they need, managing their finances, keeping an eye on their house – all sorts of things.

If you’re also applying for NHS funding to cover care fees, this can add another thick layer of responsibilities and time commitments.

One of the things that can help, particularly in an NHS Continuing Care funding application and appeal, is to keep a journal or diary. When the NHS makes decisions you disagree with, and you decide to challenge those decisions or launch a Continuing Care appeal, the details you record in your journal now will save you a lot of time later on.

The more information you jot down each time you speak to or receive communications from people in the health or social care authorities, or from the care home or care agency, the quicker you’ll be able to put a response together when you need to.

If you are your relative’s formal representative, for example you hold a power of attorney, be sure to ask for copies of assessment notes plus the rationale for any funding decisions already made.

Keep general notes about:

your relative’s specific diagnoses and their general progression over time
dates and details of any previous assessments for NHS Continuing Healthcare – when they took place, who was present, any available ‘scores’ and what the outcome was
any NHS or local authority maladministration that you’re aware of – and/or things that just don’t seem to have been done right, including things that NHS or local authority staff may have said (or not said) to you.
delays and obstruction in the assessment process
misstatements of fact in the assessment notes
any intimidation or inappropriate pressure put on you to give up your battle for funding
dates and times of any relevant medical or healthcare appointments and other meetings to do with your relative’s health needs, health decline, care provision or funding
any relevant conversations with staff and/or therapists from different bodies/departments (NHS, local authority or private), including physiotherapy, occupational therapy, speech therapy, nutrition, etc. – and what was discussed
other appointments, conversations and phone calls
notes on anything that doesn’t seem right to you about a lack of statutory funding and/or care provision
any other information or notes from relevant clinicians, doctors, nurses or therapists that you think will strengthen your case.

If you’re asking for daily care notes, care records or charts, or other information you need for a care funding application or appeal, and you’re told the information is not available, ask why this is not available and be sure to note down what you were asking for, who you spoke to, when you spoke to them and the reason you’re given for the information being ‘unavailable’.

Be sure to also keep copies of any hospital/GP/care home correspondence and/or letters or health reports from relevant consultants, doctors, clinicians or therapists.

When you’re going through a funding battle, especially an NHS Continuing Healthcare application and appeal, all these notes and details will be invaluable, especially if you keep them up to date and record them at the time things happen.

If you’re not sure what should – and shouldn’t – happen in a Continuing Healthcare funding assessment, you may find our step-by-step e-book helpful: How To Get The NHS To Pay For Care.

How has keeping a diary helped you in a battle for funding?

Tagged Categories: Appeals and reviews, Care fees, CHC funding, Legal and financial matters

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6 Comments

Alison June 28, 2017 at 4:14 pm

Hi, mum turned down for Continuing Healthcare funding. Going before appeal panel 9th Aug. Mum has alzheimers and vascular dementia and lives in a nursing home. Mum cannot walk,communicate, feed herself, take meds, she incontinent with a stoma bag and home are managing pressure sores well. She is agressive during personal care. Any tips please? Thank you.

Angela June 28, 2013 at 11:10 am

Good advice Claudine - thanks for sharing those points.

Chris Gallagher July 4, 2014 at 11:57 am

Another good thing to do, is to record the interactions with other residents.

In the (approximate), words of an Independent Review Panel in my mother's cases, "The assessors did not comprehend the need and report that Mrs XXX was in close contact with other residents that suffered similarly and their interactions impacted upon the complexity and intensity of her need for unplanned interventions by carers". Or words to that effect.

This is true of residents that might even be chair bound. (My mum is very mobile and is thumped regularly as a result). As loud noise from other disturbed residents is often a trigger for "challenging behaviour".

Also record your own interventions with other residents if staff have not acted. It gives a picture of the needs of those others that are not being met. As such it is likely that there are times when your loved one is being similarly left to their own devices.

Angela June 28, 2013 at 7:54 am

Thanks for your comment, Mark. The assessor's comments are very typical - especially in saying that his conditioning is not life threatening and therefore he won't receive funding. You don't have to have a life-threatening condition, or be at the end of life, to receive Continuing Care. You don't have to be bed bound either, or be unable to talk. It comes down to the extent of day to day health and care needs across the board. Sounds like you'll need to appeal.

claudine June 27, 2013 at 2:36 pm

I found it is a good idea to keep a diary of what you see when you visit your relative in a car home, including examples of confusion, and any health related problems you observe. Care home records don't always have enough detail or the kind of detail you need when it comes to NHSCC applications and appeals.
Also, once your relative is awarded NHSCC, don't stop your diary. You may well need all the extra evidence when it comes to the 6 month review, as I found out too late.

Mark June 27, 2013 at 11:41 am

We have just failed to get the increase on the Continuing Healthcare (CH) even though he's in a nursing and can't get up, move around or able to leave his chair or bed. He suffers from pseudo-parkinsons, vascular-dementia and can become toxic in a matter of hours. He needs help, to properly feed himself and deteriorating eyesight and a heart condition with constant angina attacks, we failed. The Assessor basically said that he can talk and communicate and is not bed-bound and his condition is not life threatening and does not need constant nurse attention. Does this mean that no patient in a care home is receiving CH, only bed bound and serious ill patients?
Any advice,
Mark.