Real stories

Applying for NHS Continuing Healthcare – Caution, requires extreme strength of character

My Mum who is 85 had a hip replacement in 2016 later that year she suffered a life changing injury when she fell and shattered her femur in 4 places. After spending 7 months in hospital she returned home but her mobility was very poor. Due to having osteoarthritis she had a second hip replacement in 2019. Over this time her memory began to decline. As well as having an overactive Thyroid mum developed wet macular degeneration and cataracts in both eyes. Her mobility and cognitive ability continued to decline over the next two years after yet another fall last year which resulted in a fractured clavicle she spent several more months in hospital and suffered a stroke worsening her dementia. She is on a level 4 diet needs turning every 4 hours and is double incontinent .she was fast tracked on to chc in November and found a nursing home placement. After a review in March we were told her funding was being withdrawn. Despite her obvious deterioration you could not make this up at my wits end with it all.

Having recently been diagnosed with Alzheimer’s at the age of 75 , I am trying to locate all sources of information about the decease . Having read many of the tragic stories on care funding I am somewhat depressed to say the least . I am trying to look to the future positively but with very little personal funds available the letters caste a very black future indeed and should perhaps be positioned in a more secure section of the web site .

My mum has just gone in a care home she’s got dementia currently I have to pay what pension money she gets towards her care I don’t no how to go about applying for chc funding

I will tell you all that we will only achieve a fair system,by standing up and doing something about this that gets their attention,in a word action.
I lost my husband in 2013 he was my full time carer,l am at present in palliative care,l have 31 long term illnesses,while l have bipolar,l am fortunately not afflicted by Alzheimer's,so l have the tenacity to fight to the end because l believe these people dont seem bothered by what they are doing to sick helpless vulnerable people,but what will bother
Them you might ask?
I will tell you l also have had NHS continuing health care refused as social care needs,as l only recieve pension credit and disability benifits,l have quickly found out the LA's are constantly raising their charging policy's to the point that l now find myself in poverty to make up for the funding cuts from central government,as all my disability premiums are taken now in the charging system.l then decided l,was in a no win situation untill commonsense, kicked in l stopped paying my social care charges ,l am aware that social services can not legally stop providing care for you,their only option is to take you to court which l want them to do,once in court( if ever they find the guts to take me) l will inform the court that l am illegally paying for my care as l am above the mearly incidental and ancillary line set out in the Coughlan court judgement am they are asking me to pay for my health needs, not social care needs,a copy of the Coughlan court case with be given by me to the court.
And as it will be a decision by the court l have no doubt that the court will uphold the principles of the Coughlan court case.
If we all did this hardly anybody would be paying,for care,and newspapers will soon pick up on this.
The LA's would have to stop their illegal activities with the NHS( by illegal activities l mean excepting patients from the NHS knowing that they should not be funding patients over the law of the land,of mearly incidental and ancillary) fighting the NHS over the years has not put a stop to the illegal activities of the NHS.
But action taken like this,with all the massive publicity this will cause,will put a stop to this and hopefully instigate parliamentary debate with positive change to follow.
Kind regards valerie

Hi, I am looking for some advice please... My mum has been in a care home (self funded) for 5 months with vascular dementia... She has in the last week become very poorly and is unresponsive in bed all the time, she hasn't eaten for over a week and is now receiving oral care as she is also unable to drink fluids. She does not wake up at all and I think sadly we're just waiting for the worst. My dad has heard of CHC and wonders if now at this stage, my mum will be eligible for it and also if its likely any assessment can happen with the risk of COVID-19, as there are confirmed cases in her home. Any advice will be much appreciated, thankyou

At the end of October, 2019, I had cause to research the difference between social & health care and primary health needs.

The Health and Social Care Act 2008, as amended by the Care Act 2014,
Changes to legislation:
There are currently no known outstanding effects for the Health and Social Care Act 2008, Section 9.
9“Health or social care”
(1)This section has effect for the interpretation of this Part.
(2)“Health care” includes all forms of health care provided for individuals, whether relating to physical or mental health, and also includes procedures that are similar to forms of medical or surgical care but are not provided in connection with a medical condition.
(3)“Social care” includes all forms of personal care and other practical assistance provided for individuals who by reason of age, illness, disability, pregnancy, childbirth, dependence on alcohol or drugs, or any other similar circumstances, are in need of such care or other assistance.
(4)“Health or social care” means health care or social care.

"Not provided in connection with a medical condition...". This would seem to contradict CHC Decision Support Tools which are based on guidance of the National Framework only. I repeat, GUIDANCE! Not law.

In exasperation I am reaching out to all!

At 87 years of age a person was Fast Tracked into a nursing home – the person may be considered ‘institutionalised’ nearly a year later not remembering her home or very little else.

The medical history would include mixed dementia (now advanced), Chronic Kidney Disease, Ischaemic Heart disease (stroke), osteoarthritis and bilateral total hip replacement. Cognitive impairment with no reliable ability of recognising risk to herself or others.

The Stroke may have caused the early onset of dementia with its associated cognitive, nutritional and mobility and other issues.

Nutrition issues have affects wound/skin integrity. Registered Nurse monitors adequate diet to maintain skin integrity. The skin’s turgor is weakening due to protein deficiencies. The person is monitored on a good day or fed the majority of the time, sometimes taking half hour. There has been weight loss and a referral to a dietician has led to Registered Nurse reviewing care plans and updating to ensure plans are met. Registered Nurse oversees weekly weighing to ensure carers are meeting the needs, other skin breakdown is a distinct possibility.

Being bed-bound or placed in an armchair, the person has bed sores that has led to scabs forming over the sores, therefore partial thickness skin loss. The person has barrier creams applied twice a day, is nursed on an airflow mattress where the pump is monitored by RN twice a day to ensure the correct settings and that the pump is working, any skin care the RN is required to dress. Being bed-bound with double incontinence there is a risk of moisture lesions. 3 or 4 pads are used a day, but Registered nurse assesses type and quantity of pads required on a weekly basis. Registered nurse also is responsible for keeping an eye on the signs of constipation/actioning response with doctor as the person is unable to reliably vocalise pain as in “my belly is hurting”.

Due to being bed-bound the person is at increased risk of Thrombosis (evidenced by a Thrombosis clot) and is prescribed ‘ Clopedigrel’ due to the risk of heart attack. The medication is monitored by a Registered Nurse where 24 hour nursing care is available.

The mobility issue affects skin integrity. The person is at high risk of tears and infection (as been evidenced by a tear and an infected wound that required antibiotics and additional nursing care).

Due to being unable to weight bear, 2 carers and a hoist are required to make transfers. Due to either not liking and/or pain the person sometimes pushes carers away when placing her into hoist. Person does not have sufficient strength to reposition herself in bed or in armchair.

The CKD precursor to incontinence and repetitive urinary infections.

Medication includes Butrans patches applied by Registered Nurse once a week with monitoring during daily medication rounds by Registered Nurse. Septaline (a mood drug) is also prescribed due to episodes of anxiety/stress, constant crying and much difficulty reassuring – the person had cried themselves out.

Has had right hand swelling with no apparent reason.

Would professionals consider the interrelationship between the above health and social care or primary health needs?

We have our 1st assessment next week for our mum with vascular dementia stage 5. She has carers 3 times a day to administer her meds and sees she has a meal as she isn’t capable. Any advice on the process?

I’ve just started the CHC process for my 93yr old father. Already it’s proving frustrating as having had a first assessment the original scored high enough to trigger DST but when I tried to get a copy of the document I signed when I eventually got it, it was NOT the one I signed?!! In other words any documents submitted by the medical staff along this journey will be submitted in such a way to guarantee you fail?!! The original document apparently was destroyed to make way for an updated version, one I never saw. I was told I can appeal but how can you appeal if original documents have gone. Any meetings seem to be either when you are visiting and helping a family member or when you are about to leave - we know why, so that it’s rushed and you don’t get chance to ask questions or get copies immediately?!! I will fight for CHC on behalf of my father even if it kills me in the process with stress (I myself have had cancer twice),

My aunt has a dols on her her dols papers state she is incontinate has no mental capacity a broken hip so mobility problems needs help washing and toileting needs help prompting to eat has had 3 falls in the last week yet the care home refuse to let me have an assesment for nhs continuing healthcare keep telling me she dont have nursing needs im sure she must be entiltled to some help !!?? Any adice id appreciate thankyou

My late father lived with dementia in his own home with self funded carers and my assistance evenings and weekends for four years. Sadly in 2016 he fell and after hospitalisation was advised he could no longer return home. Hospital suggested he need nursing care not residential and should qualify for CHC. It was felt better for him to find a home and then start assessment process, which we did. Assessment took 6 months to happen and declined even though he needed registered nurse involvement, did not feed himself, was prone to falling (but not considered to fall enough/risk was managed). He fell and broke hip 2 weeks after assessment. Major deterioration after that, bed bound, admitted to hospital several times for various reasons over next 3 months, put on end of life plan, advised CHC now likely. Wanted re-assessment, advised fast track not possible as death not imminent. Assessment date set three months after first one but he died one week before appointment. Retrospective appeal took 2 years. Declined. Had to remind CCG to pay FNC funding he was entitled to, took them 4 months to pay up following constant chasing by us. Whole process is upsetting and frustrating. I pity those with no family to fight their corner. I am now involved in my local CCG's CHC Patient Forum in the hope of improving the system for the future. We meet once a quarter, I am the only person attending who was declined, other attendees (patients, families, charity/hospice workers and CHC staff) are keen for my input (even though it's negative) and seem to be listening and are trying to improve things but it appears to only apply to my local CCG not nationally. My feeling is I should get in there and let them know how it feels from the family and patients perspective and hope I can improve things for when I am older and need help.

To all the people who have posted comments on Mark's experiences with Continuing Health Care & then, Restrospective CHC, can I say to you all , please, please do not give up in your attempts to get the monies that you are entitled to from the the NHS. I couldn't bear to read every single comment here as it it brought back the hideous and exhausting five and a half year struggle to get funding for my mum. She died in May 2014 and I finally got a cheque a few months ago. The process included the most gross incompetence, the 'manoeuvrings' of the awarding body to cherry pick comments to fit their view of what did & didn't qualify on the Needs Portrayal Document & Decision Support Tool, threats of leagal action from myself and the complete lack of interest, empathy and assistance by all the NHS people I had to deal with. However, to be constructive, I'd like to stress to all people embarking on this mammoth task the following:
(a) if you have carers looking after your relative, stress that they must make their written 'daily log' very precise as to what they observe that your relative is capable of, changes in abilities, mood, comments that the relative may make, whether they are eating unaided, how coherent they are etc. - relate it to the 12 different areas of need that are in the Needs Portrayal Document. If you don't have carers, make sure you keep your own daily record (b) keep every copy of a carers bill, monies you may have spent on buying incontinence pads/knickers etc. It costs a lot to get copies of these bills when it comes to proving what your expenditure has been (c) I would not advise employing a 'legal' person to take on your cases it is expensive and ultimately, however good they are, they do not have the same110% interest in getting justice for your relative that you do (d) look at the website for Beacon CHC (www.beaconchc.co.uk) who are so helpful and have an advice line which gives you a free number of minutes for a consultation with an expert. Beyond that, very best of luck to all of your who are undergoing this emotionally draining process and don't let the NHS win.

My Dad was taken into hospital in January 2016 after suffering an "episode". Two days later when we asked the hospital staff what was wrong with him we were told "it's his dementia". This was the first time this dreadful, life-limiting illness was mentioned and we were devastated but not as much as when we were told that he was being made the subject of a Deprivation of Liberty Order and required a placement in a secure EMI (Elderly Mentally Infirm) unit, from which he was never to return. As we were self-funding we were left to our own devises to find a suitable place and told that if we did not do this quickly he would be placed in the first available bed and we would have to pay!

Fortunately, we found a marvellous specialist nursing home who supported us every step of the way, which is more than can be said for those in control of the CHC funding system. Despite my father being deaf, blind, unable to stand, having no feeling in his hands or feet, requiring feeding a pureed diet, suffering severe sudden drops in blood pressure, hallucinating and frequently lapsing into ASCs (altered states of consciousness) we were declined CHC funding until earlier this year when it was considered he was entering the final three months of his life, when we were granted Fast Track Funding for a three month period. Fortunately, for the NHS but unfortunately for us, he passed away before the end of the period.

However, I am not giving up the fight for the funding to which he was entitled and we will continue to fight until we have exhausted all avenues as I know he would have done the same for me had I suffered such an injustice.

It is wrong that, just because someone is of advancing years, this terminal illness should be dismissed as an inevitability of getting old - it is not, it is a dreadful condition, affecting not just the sufferer but also their loved ones. My lovely Mum passed away blaming herself for him being placed in the nursing home and my Dad was so poorly that we were advised not to tell him she had gone as it would have affected him too much mentally and emotionally - and still we are told that dementia is not a serious condition worthy of receiving NHS funding.

Continuing healthcare funding is unfortunately a complete joke. Have just had a third assessment turned down after having it aggressively taken away three years ago. After we received the tick box assessment recommendation of the "nurse" who took the assessment we noticed it was also signed by another "nurse" who wasn't present at the assessment. The day after we'd received the "nurse's" assessment we received a letter from the funding dept to say " not eligible" . This confused us as we were told that the final result comes from "the panel". When I asked why have we been told that we are "not eligible" before it has been to "the panel". We received a half hearted apology saying it shouldn't have happened. I will be emailing the appeals people in a strongly worded letter asking why protocol was not followed correctly. Also there are sections that I highlighted to the "nurse" at the assessment that have been completely ignored . We are told that the government keeps saying that there are MILLIONS of pounds in health benefits that haven't been claimed. Well it will stay that way if we aren't allowed access to these funds when it remains a TRICK BOX exercise and not as a DUTY OF CARE exercise , which it should be.

We had exactly the same problem with my mother - struggled to get approval for continuing care, finally got it, and then had it withdrawn after a further assessment, when actually she had deteriorated significantly. Assessors would tell us she definitely qualified, then the official assessment report would say something completely different. Problem seems to be that the money just isn’t there, so they “game” the system to avoid pay-outs.

I am a Specialist Nurse Practitioner for Dementia - sadly this case study is indicative of the very broken system we call the NHS.
The vulnerability of people with Dementia and their families/carers is what drives me to try and make a difference not just in the U.K. but also on a global platform in China.