If you are caring for a spouse, parent or other close relative whilst they are resident in a care or nursing home, then you will generally be familiar with their day-to-day care needs.
Unfortunately, we know that often the care records are not updated sufficiently regularly, or else are inadequately completed, so as to contain inaccurate or misleading entries. Often, it is simply due to lack of resources and insufficient staffing looking after too many residents. Staff don’t often have the luxury of time to be able to record each and every time an incident occurs or care is administered, nor to consult the Care Plans as frequently as they should. All of which can lead to poor record keeping!
As your relative’s carer, you will be familiar with their daily needs and be best placed to spot any inaccuracies or omissions in their care records. For their safety and well-being, you will also know whether or not their Care Plans are being followed.
It’s vital to ensure that their care records are accurate, up to date, and contain full, detailed entries as to their daily activities, care needs, incidents and any accidents (whether a fall, or soiling, due to incontinence). All monitoring and supervision should be fully recorded.
If your relative has entered into a care home and is awaiting an initial Checklist screening assessment, or else has already obtained NHS Continuing Healthcare Funding (CHC) and is due to be reassessed to check whether or not their funded care package is still adequate to meet their healthcare needs – then the CCG’s (Clinical Commissioning Group) appointed assessors should review your relative’s care home notes and records when carrying out their assessment.
However, if the records are not up to date, are incomplete, inaccurate, or else contain fundamental errors, then the CCG’s assessors will not gain a true picture of your relative’s daily care needs. Good records are of paramount importance and can be critical to succeeding in getting them CHC Funding.
Whilst we anticipate that many CCGs’ assessors would generally acknowledge that most care notes are incomplete and can never be a perfect record, these contemporaneous, objective, written records do form an essential part of the assessment process. Hence, it’s essential that you attend the Full Assessment as you are best placed to supplement the assessors’ knowledge of your relative’s care needs, fill in any gaps, and to correct any misunderstandings they may have. Otherwise, inevitably, what is written in ‘black and white’ is likely to carry significantly more weight – whether it is correct or not – when making their recommendations for CHC Funding. Any omissions in the care records may count against your relative – even if they seem obvious to you (and the assessors). From an assessor’s point of view, it’s easy to justify downgrading a scoring by referring to the records. They may take the view that if it’s not recorded, then it didn’t happen.
Often, if there has been mismanagement or neglect, then the care home records may be ‘silent’ as to the incident for fear of blame. For example, it is quite common for elderly, frail or vulnerable residents to fall. Most falls tend to go ‘unwitnessed’, and so it is not beyond the realms of possibility that a fall will not even be recorded, or else ‘played’ down as being a very minor incident. If your relative cannot communicate their needs reliably (or at all), then the care home might get away with it – unless you happen to notice bruising or that they are in pain! But the frequency and number of falls may be a key factor for arguing for ‘high’ needs under the ‘Mobility’ Care Domain at a Full Assessment.
If your relative is incontinent, then without adequate care, they may be left for hours in soiled or wet clothes, which is degrading. They then become at risk of developing urinary tract infections (UTI’s) or pressure sores, which, if ignored and not treated quickly, can lead to more serious health complications.
Similarly, if your relative is immobile, wheelchair or bedbound, then they may be at high risk of developing pressure sores. Pressure sores are primarily caused by neglect and are totally avoidable with proper supervision and management. There should be a Risk Assessment in place to monitor skin integrity and to prevent pressure sores from occurring.
However, practically speaking, you cannot be on hand all day long and have to trust the care staff to do their job as your surrogate professional carer. But you will not necessarily know whether your relative was actually repositioned as frequently as set out in their Care Plan (say every 2/4 hours), or indeed, at the exact time recorded in their notes.
Commonly, due to shortage of staffing, some care home records are written up at the end of a long day. Therefore, it is quite possible for staff to mix up entries and put them in the wrong resident’s record, or perhaps just guess an estimated time that a resident was repositioned, if remembered at all.
If you are not there to monitor your relative on a regular basis, then they may sustain injuries, have incontinence accidents, develop pressure sores, suffer malnutrition, lose weight, not be given their medication on time or at all, develop behavioural problems etc., which you would not necessarily know about, unless the care homes have notified you of these incidents.
Therefore, it is vital that you regularly review your relative’s care home records to check that they are up to date and contain an accurate record of all your relative’s daily care needs.
Poor care home records are likely to result in a poor outcome at any assessment for NHS Continuing Healthcare Funding or any reassessment or appeal. If the healthcare needs aren’t recorded, then you may face an uphill struggle to convince the Clinical Commissioning Group, or any later Appeal Panel that your relative’s needs are indeed far more intense, complex and unpredictable than what is stated in the records in black and white.
You will need to monitor and review your relative’s records to check for any changes in their daily healthcare needs. If they have a long term condition, then unfortunately, their health is likely to deteriorate rather than improve, as time goes by. Those changes need to be recorded, as it may be the trigger point that entitles your relative to CHC Funding.
You are entitled to see all your relative’s care home records at any stage, and we suggest that you do so regularly. The care home cannot object, and if they do, it should raise alarm bells and give you even more determination to go and inspect them regularly.
If you visit your relative frequently at the care home, then due to familiarity, there may not be any issue in allowing you to view your relative’s records. If you meet with resistance, quote Paragraph 79 of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (October 2018) which states that you can have access to these confidential records if a ‘best interests’ decision needs to be made.
“79. Where a ‘best interests’ decision needs to be made, the ‘decision-maker’ must take into account the views of any relevant third party who has a genuine interest in the individual’s welfare (if it is reasonable and practicable to consult them). This will normally include family and friends. The decision-maker should be mindful of the need to respect confidentiality and should not share personal information with third parties unless it is considered in the best interests of the individual for the purposes of the NHS Continuing Healthcare assessment of eligibility. Where the individual has made an ‘advanced statement’ to the effect that they do not want personal information shared with specific individuals, this should be taken into account in assessing the individual’s best interests.”
However, for compliance with Data Protection legislation, most care homes will now insist on seeing prior legal authority before allowing you to review this personal data. A Lasting Power of Attorney will suffice as appropriate legal authority for the care home to release your relative’s records to you.
If, however, your relative has mental capacity but has not yet made a Lasting Power of Attorney for their Health and Welfare or Property and Finances, then they should attend to this immediately. We recommend they do not delay in putting the wheels in motion, otherwise you may lose control over crucial decisions and will need to apply to the Court of Protection for a Deputyship Order, which can be time consuming and expensive. In the meantime, any decisions about your relative’s health care needs or their finances may have to be put on hold, or worse, put in the hands of a third party to make important decisions acting in their ‘best interests’.
Here’s a selection of other helpful blogs for further reading around the subject:
- June’s feature on flawed CHC assessments and the importance of good record keeping
- Why you should consider making Lasting Power of Attorney or a Will
- Focus: Falling at the care home
- Understanding the four key indicators
- BBC Drama, “Care”, Shines A Spotlight On NHS Continuing Healthcare
- New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…
- Preparing for the Multi-Disciplinary Team Assessment
- The dangers of pressure sores, pressure ulcers and bed sores
- Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”
If you’ve experienced problems in getting hold of your relative’s care home records leave a comment below and tell others how you overcame the problem.
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My husband in care home with dementia is blind and also deaf.he just sits in chair all day.no stimulation.when I go to see him he is always agitated and covered in face marks .he settles after a while when I hold him.i think he needs better care which he isn’t getting where he is.would I be able to bring him home to care for him?
I have LPA for health for my loved one and am their RPR under DOLS. They are refusing to give me a copy of my loved ones records but will let me view on their premises. This is not enough as my sibling also wants to read them. I even offered to go in and print/copy them but they refused that. No reason given. Do I have a right to copies?
Surely this is a matter a Caldicott Guardian exists to deal with?
My ears pricked at this not least because it feels a little unfair, unhelpful and for the most part unnecessary in that it suggests a need to be suspicious from the outset.
Care homes should have full pre-admission assessments, person-centred care plans including next of kin, nearest relative or preferred contact and (where relevant) details of power of attorney or representatives etc.
If a person lacks capacity or is otherwise unable to provide consent and agreement to share information, care homes will have details and representatives involved in the initial referral and admission into the home be it via social worker or next door neighbour.
If you are involved closely with a relative or loved one in care and a regular visitor to the home / play an active role in their life, it’s very unlikely you will be refused access to their records without reason. On the contrary you should be involved with regular reviews, updates and included.
If you’re not named or don’t have prior consent and agreement, most homes and managers will have the means to work around this and use discretion based on a best interests decision which allows access to records but this might still be restricted.
My advice is to just speak with the care home manager, team lead or key worker and explain that you want to apply for CHC and would like to see records and ideally have their support throughout the process. In some 20+ years I have only once refused someone access to care records which was due to ongoing concerns and a safeguarding issue resulting in him being refused entry into the building. Two others I kept back just a few notes and records of a private, confidential and sensitive nature but none were relevant nor required.
I guess what I’m saying is don’t automatically assume care homes are up to no good, keeping things from you or refusing to let you access notes because they just feel like being hard work.
I’m by no means oblivious to the few cases where relatives or named next of kind have been wrongly refused access or even entry into the care home without good reason but assure you these cases are exceptionally rare, few and far between.
Please tell me who has the right to see a close relative’s care records? The home manager has refused a request by my husband to see his brothers records, saying that he couldn’t because he does not have the ‘Health and Welfare’ Power of attorney (He has the Financial POA).
We have been asking to see mums records since she went into a home to no joy as we had so many unresolved issues with them. Even after she died they are still refusing to let us see them.
I cannot get my Mother’s carehome to give me weekly updates on my Mum. If there has been an accident or she has been sent to hospital, they do not call me. They call my estranged sister who does not contact me. She has LPOA with her partner which they did not inform me of their intention. I also do not get to check her care package. I have given my details so many times for the past 5 years but they do not record them. What rights as the eldest next of kin do I have?
That is Easier said than done , my mum and dad have been married for 58 years , know each other inside out , more than anyone, they know each others wishes , yet its taken away from them, when one of them goes into care, because strangers take over and dictate , to the husband / wife /family , what is right for THEIR loved one , things have to take a serious change, because when family put their loved one into care and have to pay thousands of pounds out , to these money grabbing people .they believe their loved ones will get exceptional care . which is promised to them ,,, when the truth is , which we have realised ,and been told on to many ocassion. , we will have to give your mum 21 days notice , if her room is not paid for .. THE CCG TOOK AWAY HER FUNDING ,
My mother was diagnosed with Dementia/Alzymers 2 years after my fathers death. I cared for her full time at her home for 7 years until I got completely burned out. After several admissions to residential care home lasting from 1 hour to 5 hours, these homes were atrocious places, mum finally was taken into what was supposed to be an excellent care home according to the CQC. It was nothing of the kind and despite me writing a 7 page “mums routine document” no one read it, it got lost and at 95 she was the oldest resident but she just got treated the same as everyone else. Nearly blind, unable to walk, quite thin and with a bone marrow cancer she resided there, I can’t say lived, as she had no life, for 4.5 weeks. Despite me telling staff she was continent, needed the toilet before bed and the call bell putting in her hand it would appear no communication was evident. At 11.30pm, on mums second night I was phoned by the home to say mum had fallen out of bed. It took me 30mins to drive there and when I got there Mum was lying on top of the bed, a large tear on her left knee with a dressing hanging off it together with other bruises on head, arms body and legs. She was cold and sore and was wearing an enormous inco pad. Mum told me she needed a wee, she wasn’t given the call bell so tried to get to the commode herself. I was livid, and asked the carer about the pad and was told she was wet when she was found, I explained she was always continent and was trying to get herself to the commode and please don’t put a pad on her again and always make sure she had the call bell in her hand. Every day I visited for the next week mum had deteriorated from having the fall and I vowed to take her back home again in 3 weeks time. I had to go away for my own sanity and physical and mental health. Unfortunately mum never recovered from that fall and deteriorated dramatically over the next 3 weeks, she passed away the day I came home. One year later I requested mums care records from the home. It took 3 months and a formal complaint to obtain them. They proved very interesting reading, especially the bits about me being difficult! Not difficult just wanting staff to realise what they should have known about her had, a, they read my document rather than conveniently loosing it, b, not just treated her as a clone like everyone else, c, understanding how difficult it was for me to trust them after her fall out of bed, d, Mum was a gentle soul who mind and body had been ravaged by Dementia, e, she was my mum, I had known her all my life and singlehandedly cared for her, her home, finances etc, for 7+ years. I will never forgive the money grabbing home for the way they treated my mum and everyone else’s mum, dad, sister or brother, the lack of adequately trained staff both day and especially night. On most days I visited mum she looked like her clothes had been thrown on, her teeth, her own hadn’t been cleaned nor her hair combed, not wearing her bra, her legs swollen and not elevated, sitting in her wheelchair not an easy chair, not in the quiet lounge but together with most residents in the lounge/dinner, TV blaring, staff drinking tea and chatting round a table, probably the residents all together so the staff didn’t have to get up and check! This home was like a prison, locks on all doors, residents room doors had to be kept closed, “fire doors”, no carpets, plastic furniture, absolutely no home comforts at all, tiny hot rooms without much ventilation, I just wish the CQC assessments were carried out differently and care homes were run by people that care 100% about their residents not 100% for their bank accounts. No care home can be perfect, but I’m sure the majority could be better staffed, more homey, care for people as individuals and not a money making commodity. Despite all my mums physical, mental and health issues I was never told anything about CHC! I’m sorry for this very long post but I needed to get these issues with residential / nursing “care” homes out in the open and hope your loved one is never treated like mine. Ask to read the records, ask to see them on a regular basis, note any faults with them and speak to the manager sooner rather than later. Good luck!
Thank you , I will call you very soon , I am away from Home right now . ( all this HAS been a nightmare ) – for too long .
Hi , My Mother was diagnosed with Vascular Dementia , as far back as the year 2000. With huge difficulty we kept her in her own home , until we were “In crisis “ in2006 . I then choose a lovely “ Nursing Home “ for her , where I hoped she could remain happily for the rest of her days .
Sadly , they couldn’t keep her , as she was proving “ too disturbed & difficult “ with aggressive verbal behaviour “ . We found , ultimately a Residential Private placement .( who retrospectively took “ANYBODY “ they deemed to be “ a good financial prospect “ . We knew Nothing about CHC and were NOT informed . When I learned of this , I requested her Records . Twice . The Care Home Owner point blank refused . Twice . Ultimately , Care Home Owner DID provide my Mothers Records , when , threatened with “ NO RECORDS , No PAYMENT “ ( money talked !!?) . In 2012 , she was admitted to hospital in a terribly upsetting state ( continuous chest infection ,0pen sacral wounds ) . We are claiming , to this day still Retrospective Continuing Care . Her Care Home notes are inadequate , and missing important information . A Decision Support Tool , with Nurse Assessor , woefully inadequate( as were Care Home Records scarce .All we have received so far has been last 12 months payment for her life in a Nursing Home . We are going to NHS England next . We were thus advised , following Negative Result from Local Resolution Meeting . We need all the advice you can give please , on meeting with NHS England ?
Hi Carole – so sorry that you have been going through this for so long. Please do get in touch and we will discuss with you how we might be able to assist. We do offer some initial free advice on a 1:1 basis. 0161 979 0430. Kind regards