Deteriorating health needs and NHS Continuing Healthcare

Published 26/04/2018

Please note: This article was published prior to July 2022, and some information may be outdated.

If your relative is deteriorating, does this affect eligibility in NHS Continuing Healthcare?

No. 18 in our series of 27 top tips on NHS Continuing Healthcare…

If you’ve sat through an NHS Continuing Healthcare assessment for your relative and you know they’re deteriorating, and yet they’re found not eligible for NHS Continuing Healthcare funding, what should you do?

Let’s look at the issue of deteriorating health needs and NHS Continuing Healthcare…

The first thing to consider is an appeal, and you’ll find lots of information on the Care To Be Different website to help you.

Another thing you can do, however, is to look at what the National Framework guidelines (the main assessment guidelines) say about deteriorating health needs and NHS Continuing Healthcare – in relation to assessments and eligibility:

National Framework page 16 paragraph 38:

“Where it is considered that deterioration can reasonably be anticipated to occur before the next planned review, this should be documented and taken into account. This could result in immediate eligibility for NHS continuing healthcare (i.e. before the deterioration has actually occurred). The anticipated deterioration could be indicative of complex or unpredictable needs.”

and

“Where eligibility is not established at the present time, the likely deterioration could be reflected in a recommendation for an early review, in order to establish whether the individual then satisfies the eligibility criteria.”

In other words, if it’s pretty obvious that your relative will have deteriorated before the next NHS Continuing Healthcare review (which should be annually or less), the assessors can recommend funding immediately.

Alternatively, your relative should be assessed again in the near future.

The likely deterioration should also be included in the assessment notes.

So this is a useful reference to point out to assessors in NHS Continuing Healthcare assessments, and something that should not be overlooked.

Remember also that if your relative is already rapidly deteriorating, they should be Fast Tracked.

Tip no. 17: Should social workers attend Continuing Healthcare assessments for self funders?

Tip no. 19: How Do I Claim Back Care Fees That Have Been Paid?

You don’t have to fight this battle alone

Fighting a Continuing Healthcare funding battle alone can feel daunting. If you need to talk to someone about your case, read more here.

Tagged Categories: CHC funding, Health and nutrition, Health Conditions, NHS Continuing Healthcare

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31 Comments

Valerie bradley February 10, 2020 at 9:18 pm

I concur with all the comments here have been fighting for NHS continuing health care for 5 years,l have 31 long term chronic illnesses, and l am in palliative care ,l am not fit for any surgery, so the nursing care l need for these illnesses should have been straight forward l have told my CCG ,that l am fed up with all the stress of the last 5 years,so l am recording it all,as far as l am concerned if they dont agree to that it will be recorded anyway,because my advocate and l will both have by our sides,the 2018 framework guidelines, a Copy of theDST,filled in with the scores they should select the standing rules,as we go through the DSTif they try to mark down the score from what l think it will be ,l will read sections from the framework guidelines, or the instructions to the nurses before each domain, and l will insist the nurse puts down the mark l should have had,and that that mark was justified, underneath the lower score she put down.
It will be hopefully 2 hours of what's in the framework guidelines all on the tape eg l need two knee replacements l am seriously ill and in palliative care, the pain clinic consultant has written,to my GP saying there is nothing more we can do for her,l expect they will try and wriggle out of the unremitting pain,that is a priority, but l will explain why the priority should be selected,and tell them the illnesses that cause that level off pain,which are fibromyalgia, rheumatoid arthritis osteoarthritis and osteoporosis. can you see them trying to lower the score,saying l cant be in that much pain,with those illnesses and it will all be on tape,l have had to read the NHS continuing health care framework.the standing rules,the advice to the nurse assessor in the DSTand thousands more documentation on NHS continuing health care, that shows how corrupted they are.
Valerie

Jenny February 12, 2020 at 9:26 am

Good Luck for your meeting. It sounds like you and your advocate are well prepared and we'll informed. I too found that having my scores and rationale prepared, referred to and handed in at the end of the MDT was effective. It's quite hard for them to argue against a well prepared and fact based case. Ensure you or your advocate sends a follow up letter ( signed for) reminding them your scores and rationale was attached to theirs and should be considered by the panel. Also, when signing the DST add a note to indicate you're submitting your scores and reasoning along with the NHS DST document - just in case it gets separated and lost before consideration by the panel.

Meggie May 29, 2018 at 10:06 pm

Last week I attended a meeting at the hospital in connection with my formal complaint (about NHS Continuing Healthcare among other things) It was an insult. I made a 300-mile round trip to attend and there had been no proper investigation and the consultant, the subject of the complaint, simply denied everything, while a senior nurse in charge of discharge backed him up and insisted everything had been done correctly. I am going to the Ombudsman (PHSO) but I have so little faith in the system. I spoke to the PHSO's office and I got the impression it is as much about whether the hospital had a proper complaints process than the actual events complained of. How qualified and knowledgeable are PHSO caseworkers? Do they look at things from the point of view of the law? Does anyone have any experience of taking a complaint to the Ombudsman?

Glynis Evans May 30, 2018 at 6:15 am

I am so sorry to hear that Meggie. From what I have read on this website & the Facebook page, all the Ombudsman do is (if they find in your favour) pass it back to the particular health service concerned & just get them to re-investigate. Have you put a complaint in to NHS England or contacted your MP? x

Susan Randles May 29, 2018 at 12:53 am

The doctor did agree to complete the forms for Fast Tracking Brian. After the nurse from the care home explained what she needed to do, I asked her if she would describe my husband as having a'primary health need' and she said most definitely because of the complexity of his needs and how they impacted on each other! We were told that the Fast Track tool would be completed on the 16 May and would be effective from that date (with the help of the original assessor again). We have not received the paperwork yet but have been told it is in hand, I stopped my payments to the home from that date.
Sadly it is all irrelevant now as my husband, Brian, died on the 24 May, perhaps this finally proves he had a'primary health need'!

Glynis Evans May 29, 2018 at 7:32 am

So very sorry to hear of your husband's sad passing Susan & what you have gone through. It is an utter disgrace what is happening. The media recently reported about the NHS paying premium prices & (thousands of pounds) for exactly the same drugs that can be purchased for just £1 on line or even over the counter. Unfortunately the NHS waste so much money on things like this & overpaid assessors & administration staff, that they have no funding left for genuine needs.

Chris May 24, 2018 at 12:57 pm

We have just been through the Decision Support Tool (DST) and in our opinion planned and represented our father in a clear, open and honest way. We were very professional at meeting.We had no argument with the scoring and triggered NHS Continuing Healthcare funding on the Domain scores. However, we were denied funding because the DST [Multidisciplinary Team] and Social Worker had used an 'holistic' approach when making there decision. So you're stuck either way.
We could go on and tell you that lots of mistakes pre & post DST meeting took place but reading everyone's stories I feel so sad that despite overwhelming evidence and case studies that the CCG's and Social Services are laughing all the way to the bank and have no interest in peoples well-being. WHY don't we all join together and fight on a United Front! Lets take some more cases to court let the People make their voice heard. What happened to the LAW? DST is just a guidance tool set up for abuse and deliberate denial of peoples rights and the very ethos of the NHS. WOW! hat was very cathartic... not like me that! But is there no way to do this - a cooperative or something and fight on a different front.

Jenny May 24, 2018 at 4:16 pm

Not that it counts for much Chris, but what do you mean by an Holistic Approach? The Framework is clear that 1 Priority score or 2 Severes is enough for eligibility ie indicates a health need. Below that gives them the discretion to decline to recommend, but not otherwise, although a Panel might request further evidence if they disagree with the scores submitted. Have you had the decision back from panel yet? If not then may I suggest you write to the CCG/CSU drawing their attention to the score system written on the Decision Support Tool and in the guidance. Add in evidence of the other mistakes you allege and reference them to the specific National Framework paragraph or Case law they have not followed. Litigation going all the way to the Supreme Court is prohibitively expensive for most mortals, and certainly very stressful. I've found that holding people to account locally and being doggedly "on the case" is a better use of time than wading through ever higher appeals.

Glynis Evans May 24, 2018 at 3:06 pm

I think they just move the goal posts to suit their own end Chris. It is totally disgraceful what they do. Our case was due to be featured on Channel 4 News, but I was too ill (due to the stress) to do the interview & someone else kindly stepped in with a similar case with their mother. We are going to Independent Review Panel (IRP) next & then to Ombudsman if necessary, but what I have read from other people's stories, they are all in it together. IRP is often with an adjoining CCG (Which ours will be) & if successful at Ombudsman stage, they just pass it back to the CCG to look at again. Would love to go to court, but just do not have the financial means to do that sadly. Good luck with your fight.

Glynis Evans May 17, 2018 at 12:46 pm

Well, it appears that the grading in the various domains makes little difference to the outcome. At local appeal panel they upgraded one of our relatives scores to severe, giving her 1 Severe, 4 Highs & 5 Moderates. She was still considered not eligible. They also agreed that she exceeded the needs that Pamela Coughlan had. It apparently all hinges on if the claimant has a primary health need - based on key indicators such as complexity, unpredictability etc. It appears that these are the main areas that you need to concentrate on. Even though she had been discharged from hospital as end of life/palliative care, because she had not been administered the prescribed palliative care medication, they said she did not have a deteriorating condition.

Meggie May 17, 2018 at 8:44 pm

Glynis, I am so sorry to hear the result of the local appeal panel. It is as though Coughlan and all the other court and ombudsman cases never happened. I still struggle to understand why the NHS is allowed to ignore the law. There is no "primary health need" in law and everything else is just subjective interpretations of the guidance, interpretations that always, conveniently for the NHS, deny people the healthcare they need. Will you go to the ombudsman?

Susan Randles May 15, 2018 at 12:26 pm

I just wanted to say thank you to Angela for the excellent information in her book and also to encourage people to read the National Framework along side it. I followed the directions Angela gave and yesterday met the most helpful assessor in Brian's Decision Support Tool (DST) meeting. After meeting Brian and reading his notes she decided she could not continue with the DST because she felt that the Fast Track tool was more appropriate. We have been given the information we need to contact his GP and to obtain additional help for Brian in terms of making sure his refusal of food is not related to physical problems and to involve the Mental Health team to see if his dementia deteriorating is causing his refusal to eat and drink. Personally I think his refusals are because HE wants to be in control of his end and not have it taken over by others! We now need to see if his GP will help by completing the fast track recommendation.

Jenny May 15, 2018 at 1:13 pm

Well done Susan. This site and the book are invaluable in making progress and helping relatives who deserve nothing less.
I'm glad you've encountered a helpful assessor, there are some, but not many in my experience!
A word of caution about GPs, as many have never heard of NHS Continuing Healthcare, and they assume it is something Social Services do. Keep at it.

Angela Sherman May 15, 2018 at 12:35 pm

Thanks for your kind words about the book, Susan.

Glynis Evans May 14, 2018 at 6:18 pm

Hi Jenny - yes it went to local appeal about 5 weeks ago - we should hear in about a week, but I am not holding my breath. It is just the most corrupt process ever. The ratification panel even downgraded one of the domains to Moderate (Which they are not allowed to do) & put it back up again when we proved to them that on the previous Decision Support Tool, the exact same panel had agreed should be High & her needs had actually increased (Medication domain apparently has to be graded High if a class A drug is being administered). It is an utter disgrace. We will go to Independent Review Panel & Ombudsman if necessary, but from what I have read, they all work hand in hand.....

Susan Randles May 14, 2018 at 9:27 am

My husband is in a nursing home following a severe stroke 3 &1/2 years ago. I will be attending his third review today, he has previously been awarded NHS Funded Nursing Care. He has had 3 heart attacks, has angina, excema which keeps getting infected, heart failure and vascular dementia, he's had previous TIA's, has swelling ands pain in his left leg/foot, issues with infected toe, spells of breathlessness due to heart failure and has been in bed 99o/o of the time since he had his stroke. Still he hasn't manage to get NHS Continuing Healthcare. Now he has stopped reading (almost 3 weeks), drinking only the occasional sips and not taking most of his medication (because he ends up being sick and bringing them back up!). And he sleeps most of the time. The hospital say he can't be rehydrated because it would depress his breathing and his sodium level is now over 150 (irreversable). What do I have to say/ do to get him full funding?

Jenny May 14, 2018 at 3:02 pm

Susan, depending on the time since the last NHS Continuing Healthcare (CHC) assessment (Was it a Checklist or a Full assessment using the Decision Support Tool (DST) and with a
clinical nurse assessor plus a social worker and any people relevant to your husband's care?), I'd either appeal or request a Fast Track Assessment from the GP or direct to the CCG or CSU in your area. Get really well prepared using this site, and Angela's book. Make sure all the conditions and their effects and needs are matched against the various domains. Show how they inter relate to demonstrate complexity. It's a really good idea to download the DST read the domains, and do your own draft and scores which you can refer to and argue during the assessment. Make sure that someone from the care home who deals with your husband during the day is there and gives examples of his health needs.

Glynis Evans May 14, 2018 at 8:59 am

My mother in law had a rapidly deteriorating condition, so much so that she passed away within 5 months of the DST being completed. 4 months prior to the Decision Support Tool being completed. She was designated as "end of life" / "palliative care". She required 24 hour nursing care, was completely immobile, malnourished & required special foods, on 24 hour oxygen & saline drips, doubly incontinent, epileptic, heart & renal failure, on class A drugs, had sever contractures, plus quite a few pressure sores. She was given a number of High scores & most of the others Moderate (although we believed that 2 of the High scores should be graded as Severe as her needs were the exact wording of the Severe criteria). However she was still deemed to be not eligible.

Meggie May 14, 2018 at 8:13 pm

It is terribly sad that we have a l health service that doesn't see people like your mother-in-law as eligible for healthcare. As Jenny writes it is hard to imagine how anyone could conclude that she did not have health needs. This site and Angela's book are excellent at explaining how Continuing Healthcare is supposed to work. Sadly, it is clear from so many stories on the site and my own father's experience that some hospitals, CCGs etc are simply determined to find people ineligible regardless of how ill and in need of care they are.

Jenny May 14, 2018 at 3:07 pm

Did you appeal Glynis? Difficult at the time I should imagine, as she was obviously very unwell, but hard to imagine how they concluded she didn't have a Health need.