Deteriorating health needs and NHS Continuing Healthcare
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.
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.
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?
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…..
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.
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.
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.
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’!
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?
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