Preparation for NHS Continuing Healthcare MDT Assessment?

[DorsetCamping]

I've just taken a call from the CHC team to tell me DM has passed the first stage of CHC assessment and a 'decision making' meeting will now be held 26/2.
I was unaware that the referral had even been made by DM's care home but am really pleased as had been considering applying for some time.

So I firstly have a call scheduled with a 'Nursing Clinician' on the 22nd. followed by an MDT meeting on the 26/2 between myself, Nursing Clinician, Social Worker and a CHC rep.

I obviously want to be as well prepped as possible to present DM's case, so would be really grateful for advice/tips from anyone who has any experience of this process. I'm all too aware that it's nigh on impossible to get CHC so the fact we have made it this far shows me DM has a strong case and I want to do all I can to facilitate it being granted.

Many thanks!

@DorsetCamping that's great news! No advice here I'm afraid but I'm sure someone will be along who has been in the same position soon. Good luck!

Thanks @flygirl767
Quite unexpected tbh but definitely worth a go!

The DC and I have just come back from visiting her via a 'pod'; 1st time they've seen her since May! Was great from them to see each other but they were really shocked by how frail and confused she seemed.

How is your DM doing?

Hopeful bump

I don't have any experience with CHC for older adults so can't really comment on their process, but just wanted to give you some advice on the MDT.

I have sat through a lot of these in a professional capacity and they do tend to get very emotional. It can feel like a very negative meeting as you are having to focus on all of the difficulties which is always going to be hard to listen to. If you need a break then say. They can sometimes be quite lengthy so also be prepared for that.

If you can, make sure you have a partner or friend you can talk to soon after. After listening through all of the negatives, it's helpful if you've got someone you can talk about the positives with and any funny stories.

I try and reassure families that what has been discussed is only a small part of the person, it's not a true reflection of their personality or who they are and we know that there is so much more to a person than their needs.

Hope it goes well for you both and you can continue to visit her regularly.

@DorsetCamping

Thanks *@flygirl767* Quite unexpected tbh but definitely worth a go!

The DC and I have just come back from visiting her via a 'pod'; 1st time they've seen her since May! Was great from them to see each other but they were really shocked by how frail and confused she seemed.

How is your DM doing?

DM still in hospital, no breathing difficulties as yet but they are keeping her in over the weekend as around day 10 post Covid diagnosis can sometimes be a point where symtoms appear. Possible respite care before going home and referred back to MH services as they are not convinced she has Alzheimer;s, maybe mixed dementia or Lewy Body.

I am meeting a friend tomorrow for a walk who has successful experience of so CHC so I will get some advice from her and message you.

I have been in many many CHC mdt's and referred for assessments.

To be honest you can't really prepare for them as it's just about your mum's abilities/needs/communication etc and if she is already in a care home then the care staff will likely be best placed to discuss and put forward evidence of her need for assistance in various different areas of her life. Especially if she has deteriorated and family have only had short visits over the previous month's.

I agree with PP in that it may be a little emotional for you to hear the realities of her day to day needs now which may not match what you yourself feel/think. But if it means she gets the financial support she is entitled to then it's best for everyone to be open and honest.

The nurse clinician will probably chair the MDT and will go through each section of the checklist, the evidence already gathered from care staff, your mum (if able to contribute/sometimes just observations taken) medical notes and yourself and check everyone agrees or has further input to share. Once this is done there is basically a scoring system, it is slightly different for each area (called domains in the CHC paperwork). The domains include communication, nutrition, breathing etc.

My advice is just to share your honest opinion and anything you feel is pertinent so you feel heard and considered. It is an inclusive process and not to be apprehensive about. Good luck

Hi Dorset. I'm a hospital Social Worker and do DSTs all the time, I always forewarn families that they can be an emotional affair. Do have a look at the DST paperwork beforehand, it's easy to find online but let me know if you can't find it. The most frustrating thing is that the process is about fitting people into boxes, and the issues around 'double scoring' across domains. It can get tricky for example, if someone has challenging behaviour due to their cognitive impairment, and sometimes this can cause disagreements.

As a Social Worker, I'll always fight for what is right for my service users, and most of the time I get the right results. There are some nurse assessors who are arseholes and I roll my eyes when I see it's them conducting the assessment, but on the whole I've found them a good bunch and we work well together. I do get frustrated by the lack of consistency though, I can have two different cases which are similar and the nurse assessors may assess them differently, that's where I certainly do challenge. One nurse assessor will always score no needs in communication if the person can say words, regardless of whether they make any sense or not - that is not communicating, so I always lodge a disagreement. Another thing I'm always careful about is if someone's need in a domain doesn't appear to be that high because the need is being met, so for example, someone has not had any falls for a week because they've had one to one care. It is because of that care that they haven't had falls. A met need is still a need.

Please give me a shout if I can help in anyway, I appreciate how daunting and complex the health and social care landscape is.

Do take it very seriously from now on and don't skimp on the evidence you produce (although you may not have much if you haven't been able to see her for the last year). Passing the first stage doesn't mean she has a strong case, it merely means she hasn't been screened out as being a waste of time to assess.

Here is the decision tool
www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool
It's not a tick box exercise, but they'd expect several "High" ratings, and a demonstration, not that she has nursing needs, but that she has unpredictable nursing needs that need nursing decisions on a daily basis. Go through it carefully, and when you come across needs try and quantify -eg - she's had pressure sores - ok, dig in your notes of your communications with the care home as to when she's had pressure sores, how long they've lasted. And so on with everything

I found it interesting to go through with my father - cognitive impairment, susceptibility to pressure sores so needing turning in bed through the night, serious heart problems limited mobility. deaf, often in a fantasy world so meaningful communication is not possible, incontinent - but still nowhere near the threshold for CHC - because it really brought home to me how bad health could be. MAde me feel how lucky we were.

Thank you all, this is so helpful.
As mentioned it will be difficult to provide substantial evidence from my side as she has been in hospital/care for the last 6 months and so I am reliant on reports from nursing staff.
I will go through everything with the NH but basic understanding and is:

She has Type 2 diabetes
Severely obese
heart problems
Changeable mobility but pretty much now bed bound and reliant on 4 people to hoist her.
Unpredictable lymphedema causing major swelling, skin lesions and ulcers.
Intermittent cellulitis
Intermittent but regular double incontinence. Catheterisation regularly needed.
One major episode of delirium, resulting in 6 months under DoLS in a MH unit; inconjunction with several TIAs; resulting in unpredictable cognitive and emotional state. have been told risk of repeated delirium high
Regular refusal to eat/drink/take meds
Chronic rheumatoid arthritis.
Finally (and not sure if relevant) she has a long standing dislocated shoulder which was only picked up when admitted to hospital for another condition, 3 weeks ago. Major safeguarding investigation now launched with the MH hospital. Despite several attempts to have her shoulder repositioned under GA, the surgeon said it was too late to treat and she will now need to live with the pain and loss of movement

What you do know is what she was like 6 months ago. So if they present a picture that is more rosy than 6 months ago, you can think whether she has recovered in that respect, or whether they are falling in to the trap of forgetting that behind every need that has been met there is nevertheless a need that has to be taken into account.

Remember you and the nurses are working from a different context - she is quite possibly the ill-est person you have had dealings with whereas the nurses will have seen many who are more ill. That will colour both your perspectives.

I now have the completed checklist from the NH and the first meeting with the nursing practitioner is at 3pm today!

Hope it goes well @DorsetCamping

My DSis did this for my DM, she found it as PPs have mentioned, pretty exhausting. All the best.

Good luck @DorsetCamping really hope it goes well (this is Flygirl-name change!)

Thank you. I've also been speaking to the NH this morning; it's shocking how much her needs have escalated over the last 12 months. She is now totally dependent on several levels.

Like we were discussing a completely different woman

Fingers crossed for a fair meeting and positive outcome. Your DM would be pleased you are giving it your all on her behalf.

We have our CHC meeting tomorrow - wish us luck!

We found this publication from Beacon -
document 2: Guide to Continuing Healthcare Assessments - www.beaconchc.co.uk/xazewat3apruc2u/
and
this from Irwin Mitchell solicitors

Hope they help others

Hope it goes well @Sundayscented

Thanks @Sundayscented this is really helpful.
It's daunting how much preparation the Beacon guide says I need to undertake.

Hope it goes well for you tomorrow, would you mind reporting back?

Just found this really useful thread - we have our CHC meeting on Friday and I'm grubbing around on the internet trying to get some idea of how best to prepare. Good luck for tomorrow @Sundayscented, and I too would be interested to hear how it goes if you feel you can share. My mum has been in hospital since late December after suffering a huge stroke and we are hoping that the meeting will enable us to make some decisions about mum's future, and whether she can come home or will be better cared for in a nursing home. We have already been told that her care needs are 'heavy'.

Don't underestimate how large care needs can be, and remember anything you commit to will be for the long term, without the option of sick leave or days off

How did it go @Sundayscented ?

Approved full CHC .

The meeting was over the internet led by a CHC Nurse Practitioner. With Mums' Social Worker, the Care Home Lead Nurse and us answering questions and adding any items.

The NP was good at explaining things and asking questions. She took a brief history of how we got to this point then went through each of the care domains. The Care Home and us left the call and the CHC Nurse and SW discussed Mums case. They rang back within 15 minutes to say we'd got full funding. Mum was scored as 3 highs, 4 moderate and everything else low/ neutral. She said their reasoning was that her prognosis was not very good and in one care domain bordered on severe.

I think the Care Home Nurse's input was the main reason we succeeded. She was wonderful and gave lots of information, she had previously said to us that she thought Mum should get full funding. We only had the information to mid December when Mum went into hospital but the nurse had good records from her January admission to the care home.

Off to celebrate now! If anyone has any questions I'll try to help. Good luck to everyone else going through this.

That's brilliant news @Sundayscented, well done!

That's fantastic news @Sundayscented !
Well done.

I didn't even think to ask if DM's care home nurse would be attending and I'm not familiar with the appointed SW so we shall see what happens tomorrow.