Abuses in NHS Continuing Healthcare – a personal story

Abuses in NHS Continuing Healthcare – a personal story

“I empathise with anyone going through the Continuing Healthcare assessment process…”

It seems that abuses in NHS Continuing Healthcare funding assessments are prevalent across the country. NHS Continuing Healthcare funding covers the costs of full time care for people who need care primarily because of their health and nursing care needs. However, many people are wrongly denied this funding.

The website Henpicked.net recently published an article from Angela Sherman, director of Care To Be Different, about her personal experience battling for NHS Continuing Healthcare for both of her parents. It highlights some of the things she went through and why she set up Care To Be Different after her parents died. We’ve included the link below.

Abuses in NHS Continuing Healthcare

Angela Sherman, director, Care To Be Different talks about abuses in NHS Continuing Healthcare assessmentsAngela explains…

“At Care To Be Different we hear from hundreds of families with harrowing stories to tell about their experience with NHS Continuing Healthcare. Each story is unique.

At the same time, each one shares common threads – namely, maladministration by NHS funding assessors and clear breaches in Dept. of Health guidelines by those assessors. The kinds of things people report in relation to NHS Continuing Healthcare funding assessments are often shocking.

My own experience was horrendous, and I can entirely empathise with anyone going through the Continuing Healthcare assessment process.

Intimidation by assessors, misstatements of fact in assessment notes, glaring omissions in summaries of health needs, assessors refusing to answer questions about the guidelines they have broken, deliberately misleading statements in assessment notes designed to play down health needs and deny funding, stonewalling by people within health and social care, inappropriate questions about personal finances… I experienced all these things at the hands of the assessors.

I’ve highlighted just some of them in this article on the Henpicked website: Who pays for your care?

What goes on in the assessment process needs to be widely exposed. Flawed practice and a seemingly deliberate denial of NHS care to older people – care they are legitimately entitled to – causes untold stress and distress to families. Family members acting on behalf of a relative often succumb to poor health themselves, and also financial hardship, because of the actions of assessors who are clearly focused solely on preserving budgets.

The appalling abuses in NHS Continuing Healthcare assessments have been going on for years. There is gradually more about this appearing in the press, but most of the population are still blissfully unaware of what goes on – and unaware of what might be round the corner for them as well, when their older relatives become ill.

For someone in the middle of such a battle, it’s often hard to see a way forward, even to the next day. And it can be hard to publicise what’s happening when you’re in the middle of it.

When the battle is over, regardless of the outcome, many people are too exhausted and traumatised by what they’ve been subjected to, to take things further and hold the heath and social care authorities to full account. You can read my personal account here: Who pays for your care?

Find out more about NHS Continuing Healthcare

 

16 Comments

  1. Graham Chenery 2 years ago

    My dad has Vascular Dementia, he is also incontinent and more recently has become increasingly aggressive in his nature especially towards mum. He has been living at home with my mother who is now in her 80s and has been his full time carer.

    Approximately 1 year ago in August 2014 my mother had a heart attack and had to have a stent fitted. When she came out she continued to care for him and of course when my brother & I could help out we would. In saying that we also both have to work and also have young families of our own to care for.

    My father is now 86 and as he has gradually deteriorated it became more stressful for mum to cope with him at home. One day it came to a head when dad was being particularly difficult Mum broke down and ended up calling social services to arrange what she thought would be respite care.

    The social worker advised mum that dad would be put in an emergency bed for assessment. About week passed & we asked mum when dad was due to come out. She was not sure so we then phoned social services on her behalf. The social worker advised us that dad was there for assessment and that we would have to be present when he was assessed. It was left at this, after the telephone conversation we were waiting for social services to get back to us regarding the assessment meeting.

    Dad has now been in this temporary care home since Friday the 29th of May this is now the 13th week. At week 5 we had a discussion with the care home manager who wanted to know when dad would be leaving the care home to which we replied that we are waiting for the assessment meeting. As we hadn’t heard from social services we gave them a call and apparently the case had been transferred over to another social worker who was to be our case manager.

    On contacting the new social worker she told us that she hadn’t received an email from the previous social worker advising her to take over the case & arrange for the assessment meeting so thus causing further delays. Eventually the meeting took place on Wednesday 8th July the following week being week 6.

    At the end of this meeting we were informed that we would now be paying for dad’s care but we still don’t know how much we are going to be charged for this as they couldn’t tell us. They also advised that if the temporary care home needed the bed they could ask us to take him back home. We were also advised that if dad is to go into full time care that his pensions would all be taken. This to us is a worry because it is dad’s pensions that pay all the bills at home where mum also lives.
    We were told the process of dad being assessed for funding the care home could take up to another 4 weeks. I then phoned social services at approximately 4 weeks and was told that the process could take up to another 3-4 weeks because it has to then go in front of a panel.
    During this time it was brought to our attention about NHS Continuing Health Care which we have been trying to look into, I have had a discussion with our social worker who has advised us that they haven’t gone down this route. To which I replied shouldn’t Dad be assessed for this first because we could be paying for dad’s care and it could put the local authority in a potentially unlawful position. This is because we could end up wrongly paying out money when the NHS may well be responsible for this.
    This could lead us into having to claim back any monies that we have wrongly paid out in relation to dads care, and therefore more costs could be incurred & time wasted trying to recover these expenses.
    By getting an assessment done earlier to see if he is eligible could mean a lot of time money and heartache could be avoided in the future.
    Do you think that dad could be eligible for NHS Continuing Health Care after reading about our situation here or is there any further advice or input you could help us out with.

  2. brian 2 years ago

    Hi, my wife has had c.o.p.d for the past 12yrs. 7 weeks ago she was admitted to hospital and diagnosed with lung cancer. We have been told that because of her condition she would not withstand any of the treatments, so there is nothing they can do. She is going to be discharged to our home shortly and is of this moment in an continuing healthcare assessment. I have read that only her own personal assets are to be considered when it comes to the local authority means test, is this correct? We have 1 ISA each of eqaul value and a joint savings account. Can i split the savings account in to 2 equal sums and place 1 half in my personal account to protect it from inclusion in the means test. She will need carers at home and we envisage that we wont get NHS continued healthcare so will probably have to fund carers from the local authority.

    • Author
      Angela Sherman 2 years ago

      Thanks for your comment, Brian. I imagine it’s a very difficult time for you. Keep in mind that local authority means testing and personal assets/savings/money/investments are one thing – NHS Continuing Healthcare (CHC) is another. The two things are completely separate. A person’s assets and money do not affect their eligibility for CHC and no assessment of financial means should take place by the local authority until the NHS Continuing Healthcare assessment process is complete. This is the only way to know if a person should be means tested. Many families are told that their relative is unlikely to qualify for CHC, but the only way to know this is to go through the assessment process. It can be a good idea to separate your assets BUT it’s vital to take independent financial advice – and from an adviser who has an in-depth understanding of care fees and CHC. You’re correct that it’s only your wife’s assets and money that should be taken into account in any means test – but, again, this should only take place once the CHC process is complete and if she is not eligible for CHC. Some independent financial advisers are member of SOLLA – the Society of Later Life Advisers http://societyoflaterlifeadvisers.co.uk You may be able to find an adviser in your area through SOLLA – but still check that any adviser you speak to understands that your wife should not be means tested until the CHC process is complete.

  3. david 3 years ago

    Hi, sorry to go off the track a bit, but can anyone tell me what are the rules regarding my wife being present during her mothers personal care. The care home has said my wife can’t be present as she questioned their care practice and instead of working with her are trying to flip it. Also from having an open hours visiting policy the home now say we can only visit between 2-9 pm and must leave then even if she is distressed. Just looking for some clarification as to what the rules are on personal care. Thanks.

    • Angela 3 years ago

      Thanks for your comment, David. This is rather outside our scope here, and it may relate to matters of safeguarding. The care home’s actions do seem very defensive, and I can understand why that may concern you. It may be worth calling Action on Elder Abuse – just to ask the question: http://www.elderabuse.org.uk/

      • david 3 years ago

        thank you ,will do.

  4. Sandra 3 years ago

    Today I endured another screening exercise which was frustrating to say the least. How come Social Workers seemed to be managing the NHS budget and yes after dealing two local authorities it appears that news travels fast and attitudes change. When asked why a screening tool carried out on the 01 April is deemed incorrect and again had to be done but strangely Mum scored less and in fact is not eligible for the full assessment. However due to challenging it was deemed to go to a MDT irrespective of the result.

    Care Worker seemed to either lack skills in recording factual information or under strict instructions from Management. How can these scoring systems be allowed to be carried out at the detriment of Health Care for vulnerable Parents.

    Can someone assist in telling me how a UTI can influence behaviour to such an extent that despite a prognosis of Frontal Lobe Dementia and a clear deterioration of Cognitive behaviour, including psychological functioning and behavioural outburst is not recognised. In fact I heard today that this is the reason again despite the fact that there is no cure for this condition.

    Any guidance would be appreciated, the MDT will be soon but feelings of exhaustion will be placed aside and the fight will continue, someone has to ensure fairness is carried out.

  5. Ellie 3 years ago

    A good example of misappropriation of funds is the approx £60,000 spent fighting an estate value of about £20,000. How can that be justified? What don’t the auditors pick this up? Where do those losses get allocated to?

  6. Angela 3 years ago

    Quite apart from the huge cost (emotional, health, financial) to the family member having to fight for proper funding for their relative, the cost of this whole situation for the taxpayer is also huge. These costs include: healthcare and welfare benefits for family members who become ill and incapacitated because of the ordeal, the money the NHS wastes through seeming incompetence by many assessors and in obstructing the proper course of assessments, the administration and paperwork required to carry out endless repeat assessments and appeals resulting from NHS maladministration, legal fees when the NHS decides to instruct a solicitor (instead of NHS personnel) to deal with the family, plus the salaries of all the NHS people involved in this. This is all public money. It is not the fault of the families; it is caused by NHS teams who seem singularly focused on protecting their own budgets and withholding NHS care and care funding – never mind the consequences.

    • Chris Gallagher 3 years ago

      Amen Angela,

      Emotional cost and that of time and energy is not something that we will ever get back. I have spent six years acquiring more than a layman’s knowledge of this process. It is useless knowledge and I would have been better to have spent my time on another degree course.

      An IRP crucified our old PCT after a 26 month delay. They overturned two decisions. Much was written by them in our support. (We paid nothing during this period and asked the Council to sue us. They did nothing).
      Within weeks, the result of a CHC review put us straight back to where we were. Coming up for a year again and still no new IRP booked. Still no money paid out.

      The PCT’s/CCG’s response to losing last time, was an expensive external auditing team who of course found that the PCT/CCG had not breached a single rule. (Why would they find otherwise if they wanted to work for the NHS again?).

      The PCT/ CCG, (responsibility crossed over), did not go to the Ombudsman and complain, as I would have had to if the IRP appeal had failed….. I wonder why? However some comments from the audit are used in the current local appeal refusal to confound argument that the same evidence of needs is being ignored or assessed incorrectly.

      By the way, has anyone else ever been banned in writing from corresponding with the NHS? No swearing, no threats, or even frequent complaining. (yes they have protocols to deal with that too), yet I was threatened with the NHS’s Security Team if I corresponded prior to an IRP. I can only think that my comments and questions were too near the truth for them to want to answer.

      For days I laughed at the thought of several heavily armed and body armoured ninjas being helicoptered on ropes through the pre-blasted windows of my bungalow during the dark of the moon. Others might well have been frightened by the letter.

      However, the Framework insists that a dialogue must be kept up right until the point of the IRP. So yes the pen is mightier than the sword but only if what it writes is applied in good faith.

      It is also the recent case that a Director of the Commissioning Support Unit that works for my local CCG has instructed her staff to refuse any and all correspondence from me. Again no swearing etc. just too many truths for them to accept and questions to answer.

      Before I was banned again, they wrote that they did not need to abide by any other law except the National Framework. (Which is not even Law as such…. it is guidance to practice the very short paragraph that is actually the Law.)

      The CCG’s Directors have failed to respond in six weeks to my complaint that as I am now banned I cannot represent another patient and make his appeal. I wrote to them explaining the the CSU, their subcontractor, is at fault and how do I make an appeal if I my correspondence is to be refused. By ignoring me they also commit Data Processing Act offences because they will not send any decision support tools in the case and upon request, to the patient. But of course they wrote that they don’t need to abide by any other laws didn’t they?

      The CSU on behalf of the CCG now refuses to send DST and Panel notes along with the refusal or acceptance letters even though it is a minimum requirement of the National Framework.

      Similar problems exist with my County Council. I exposed for the 2nd time in 2 years that they did not have the required written internal dispute process.

      The NHS produced a 2009 document in Jan 2014 claiming that it was what was being used in the interim. I know that they document is nonsense because it never previous to Jan 2014, existed and the old PCT in late 2011 admitted to an IRP that they did not then have a written procedure. She has made it up.

      Then the Council stated that they were using one given to them by the SHA. Which of course does not exist because the SHA had not previously given them one because as I exposed, they and the PCT only put one in place before the new changes at end 2011. That document was arranged between the PCT and The Council…. The SHA were not involved and the Framework does not require them to be.

      So both organisations at Director level, are knowingly lying in a financial matter and that is criminal fraud under the 2006 act. At least one document is a forgery too and is criminal under the 1981 forgery act.

      Legal advice is that if by refusal to communicate, they exclude my father in law from the appeals process then a Civil Court action will be necessary. The lawyers seem to believe that the entire CHC appeal will need to be heard by the Court because it will not have been heard elsewhere. Have I found a way to avoid the appeals system in it’s entirety?

      I would take a Judge’s decision over someone with their inferred budgetary considerations (do what’s expected and keep their job) any day. He would have to hear all of the evidence.

      Use of precedent would also be enforced which is a sore point at the moment. The NHS reckons that they do not need to abide by case law. Judges stated [Paraphrased], that without precedent (such as IRP results and past assessment DST’s), being considered, then only random outcomes can exist within decision making processes.
      It is in fact illegal to accept random outcomes. Those charges can be leveled at the CEO’s of the Council and the CCG and CSU.

      It’s not just us. After six weeks my MP still has not received a reply from a regional Director of NHS in regard to evidence he has seen of Forged Decision Support Tools in two out of three assessments and falsified accounting forms that were passed to me during the last IRP. Or from the CEO of our County Council. Who does so enjoy involving the Police when MPs appear to be hiding money from him when it is in fact a Civil Court matter.

      However my, (Dementia Suffering), mother’s MP has yet to receive a reply from the Secretary of State after 2 or more years. Which he recently stated was a breach of Parliamentary rules. Has he done anything about it? Of course not.

      So they all (MP’s and Ministers included), do exactly what they want and as Angela states above…. never mind the consequences.

      • Angela 3 years ago

        You make some really good points there, Chris. Vested interests coming into play by those (supposedly) tasked with investigating their own people, health and social care employees closing ranks to protect themselves and deflect the truth by whatever means they deem necessary, threats to families and stonewalling…

  7. Ellie 3 years ago

    Dear. Angela
    You are so very accurate in your statements:
    YES What goes on in the assessment process needs to be widely exposed – but how?
    As you say, the Flawed practice and a seemingly deliberate denial of NHS care to older people – care they are legitimately entitled to – causes untold stress and distress to families. Family members acting on behalf of a relative often succumb to poor health themselves, and also financial hardship, because of the actions of assessors who are clearly focused solely on preserving budgets. Seven years of fighting a battle that should never have needed to be fought,ending in the estate being insolvent as a result of being taken to court by county council who had taxpayers money to fight me with, that win for them is probably being quoted as another precedent to destroy someone else who’s rights are being overridden by these institutions.

    For someone in the middle of such a battle, it’s often hard to see a way forward, even to the next day. And it can be hard to publicise what’s happening when you’re in the middle of it. I myself contacted the local newspaper who were interested in knowing more but I just did not have the energy or the strength to do this.

    When the battle is over, regardless of the outcome, many people are too exhausted and traumatised by what they’ve been subjected to, to take things further and hold the heath and social care authorities to full account.
    Absolutely right, it has seriously taken its toll. Not been able to come to terms with mum’s death, still feel such a failure at being trodden all over by people who have no consciences, how can they have. They manipulate and do everything they can do to make cogs savings at the expense of peoples well earned fights.
    I so wish I could carry on the fight but I have to move on as do so many other people like us!
    It leaves me so bitter and angry……. This country sucks!

  8. Peter Couch 3 years ago

    I’ve had no end of trouble getting NHS Continuing Healthcare for myself and for my late mother, even though there is ample medical evidence. A retrospective review proved that Plymouth PCT had used unlawfull criteria, rather than the ‘incidental or ancilliary’ test.

  9. Angela 3 years ago

    Much of what goes on in Continuing Healthcare certainly is scandalous, Janet – and the ongoing battle with the NHS and local authorities can seem relentless, as you know only too well. It’s even harder having to do the same thing for the second parent.

  10. Janet 3 years ago

    I am into the 3rd year of fighting the local authorities for the money they took from my dad whilst he was in care. 3 months after my dad died my mum had a dementia diagnosis and I’m going through the same thing with my mother although things are different I’ve now got a wonderful solicitor who is going to speak to the local authority on my behalf, I understand that this option is not open to everyone, but the money I will get from my dad will help me fight this. The whole thing has been a nightmare almost cost me my marriage etc. anyway I live to fight another day much more informed, it really is a national scandal why should this happen, if people need care, it is free.

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