I just need to talk .. 😁 CHC looming

[Harshacceptance]

This forum really helps me to process - the advice and wisdom has been invaluable yet I still cannot make sense of it all. I try to box it but it overflows …

if you don’t have the time to read on then I would really value some CHC feedback

1. Care is already in place via Fast Track - at the CHC meeting how long does it take to make a decision?

- It goes to panel for assessment etc

- has the evidence been collected before or post the CHC meeting

2. If it is declined, how quickly do they withdraw care given it is already in place, surly there is a duty of care?

3. If you appeal immediately can they still withdraw care whilst an appeal is ongoing?

4. Any advice on appeal - we will request all DST evidence immediately - I’m far from convinced / I know it is not being collected in detail by the CHC team.

5. Any views on Merseycare / Sefton specifically

6. Is it usual for a care agency aka supplier to the NHS to be invited to a CHC meeting - there should be a nurse, a social worker, the patient, witness … however an external agency? (Dad’s DN experience has been poor, lacks evidence so the carers do know his needs best. However they are a supplier not the NHs)

It’s such a postcode lottery … I’ve read on here that what we need is a strong DN to advocate to complete the CHC alas we’re in quite a bind because dad has had very poor DN care - the amount of times we have had to escalate his care is a testament to this. His neuro consultant and palliative consultant and team have been amazing and treat him holistically they are fully supportive and providing written evidence.

====== here’s my brain dump post yesterdays crisis =====

Things with my parents go from a stable “balanced on a blunt knife edge” as my brother calls it to crisis very quickly. The day after a crisis I sit in shock whilst I process everything as I don’t have time whilst I am there, today is that day - at 6am yesterday morning I had multiple calls from mum, initially thinking dad had passed, multiple voicemails for help which sprung me into a “drop everything” and drive 50 miles there … thankfully a friend could take my son to collage 20 miles away, I nearly put him in a taxi.

This has happened too many times to count over the past 14 months since dad has been totally immobile and incapable of looking after himself. His wish is to stay at home. Any suggestion of a nursing home is met by extreme anger from mum. It’s an elephant in the room.

Mum had been up all night vomiting - dad stuck downstairs completely helpless. I walked in and the house stunk due to the recurrent UTI and catherta bag that was full. Dad was looking dreadful in bed, hardly able to talk as his anxiety was so high. Mum was upstairs very distressed. It was dystopian. Thankfully either my brother / myself could drop everything, we always manage to.

Mum has slept on the sofa so many times, which she will never admit to healthcare professionals, I’ve told them … she’s so stressed / paranoid that if she sleeps, has a stoke or … dad will be helpless. I took her to hospital the other week for a brain scan, she was convinced she was going to die leaving dad helpless. She’s 79 and still quite able, can drive - our focus is on both our parents, mum can have a life after dad yet we fully understand how hard that will be.

I took over mums job for the day, whilst I tried to let her sleep. Carers came in as they do three times a day, the emergency advanced nurse practitioner came round due to his UTI (he is on GSF for paliative), the DNs came round to take a sample and check his , went to surgery to drop sample, fed and watered dad, went to chemist to collect meds, gave him another tablet to add to his pages of medication. I phoned the GP as dad has developed a lot of neuralgia over the past few months in his shoulder, his arm floats which is the only limb he has any erratic control over due to his tremors. He is paranoid about addiction to drugs so they think some paracetamol will help his arm pain, he won’t have a mood stabiliser as he thinks he will be a zombie (he has 2 pages of prescriptions) - he said it was 7 out of 10 to the nurse … he is in such a horrible state.

My brother and I are like coiled springs and drop everything to help our parents to keep our dad at home which are his wishes. It’s a 100 mile round trip for us both, we are there multiple times a week, it’s been going on for over a year now. I hate to say it we just didn’t think dad would be here, we really didn’t. We cannot do anymore.

What I’ve noticed is the intense paranoid state of them both, you can feel the anxiety in the house yet they don’t ask for help which makes them both suffer more than they need to. When the health professionals turn up, it’s everything for a positive show - oh it’s ok etc etc yet my brother and I see the reality. Whenever we have tried to intervene in their best interests the most extreme arguments we have ever had develop, we back down as it doesn’t get us anywhere.

My brother and I are pragmatic about our dad’s condition. When he was diagnosed with Parkinson’s, later with CBD in Dec 2019 we both knew it was terminal and have focused our time on ensuring the best quality of life for dad and our mum.

Fast forward : next week is the CHC review … it’s causing massive stress as you can imagine.

The CHC person said on the phone that she doesn’t believe he qualifies anymore 🤯 how dare she even intimate this when she has never seen dad! Her job is to gather the evidence for panel … alas we know it is all about budgets.

My parents are convinced it will be withdrawn, they are already defeated. I am attending the meeting and we have supporting letters from his neurologist, the paliative team and I informed the GP this was going on - I’m hoping that as his MDT support and are consultants this adds some evidential weight to the outcome.

I’m utterly confused and angry : how on earth can a decision be made despite being under fast track as it bypasses DST / Panel to even consider care being withdrawn at this stage in a persons terminal illness, dads prognosis is very poor.

If the care is withdrawn, I dread to think of the outcome. My parents worked hard all their lives, they believe in the system and don’t want to cause others more work or be a nuisance.

I will contact the PSP org as I know many have massive challenges here.

Today I am drafting the DST - my partner is a nurse with a lot of CHC experience. She left the district because of how the NHS has changed. She has been so frustrated / disgusted by how my dad has been treated.

Thank you for reading to the end. It helps to pen this all down on paper whilst reassembling life the day after …

[Millidog]

Hi, I am so sorry you are going through this. I cant answer all your questions. We gained CHC but not on Fast track and theire may be others with better/more information but some of my thoughts and information may help??

If Fast track granted its likely that they will either be assessing for further fast track need i.e. end of life, hence the view that he no longer qualifies. Therefore you should push for a full assessment. Perhaps query this upfront of the assessment date and ask if youy need to complete a checklist or ask is the assessment for a full DST meeting and do prepare the evidence to submit againts the 12 domains before the assessment date.

The DST assessment is likely to be 2 hours long

Be there and be prepared

It would be held with a social worker and NHS assessor. They are likely to ask for information from anyone involved in yours dads care but I wouldnt leave it to chance. In our experience they didnt invite anyone but I did - carers, physio, Ot and Neuro Nurse and I would ask anyone you can think of to either attend or provide you with written information.

Make sure you have written evidence to send in advance, to also take with you, give the assessors copies and be prepared to talk through, argue you case, give worst day examples and have alreday decided on your own scoring and be prerpared to explainb why and defend your scores (perhaps talk to the carers in advance and get them on side on this)

Evidence I prepared (some of which they asked for in advance but some I did off my own back)

- Letters and list of medical issue and visits

- medication and complexities of medication changes

- Evidence with specific excmaples against all the 12 domains e.g breathjing, mobility eg number of falls, number of nearly falls but saved by carers, cogniotion issues, communication issues etc and a few others examples eg eyesight in the additional final no 13 Other section

- Detailed information against the 4 key important areas section of Nature, Complexity, Intensity and Unpredictability - detailing evidence for these areas I understand is critical to show high level of need, eg the complexity of the illness of how one area such as mobility falls can affect another eg Cognition

- For both of the above you need to show how there is cross over between issues

- we were asked for a 72 hour diary - I gave them more - both eaxmaples of 72 hours minute by minute in detail of the care of what the person was doing and what care support was needed and I also gave a 3 month overview of chnages and detreioration

Photos of cuts, stitches, bruises, sores

I used the infomation on the PSPA website " CHC to link PSP to the CHC criteria and also used the checklist and DST documents and scoring key so I was workingh to the same docuements as the assessor/. These can be found on the NHS websites

Also useful can be to read the full document as this details the process and dos and donts so I picked up the assessor on a few procedural points to let her know what I was talking about

I also looked up CHC for our area on google and found some information so that may be worth a go

Regarding decision s- it does seem to vary - again read the document. i beleive it says the assessors make the decsion and recommend it to the panel. The panel should upho;ld the decison except in excpetional circumstances. Timing again seems to vary - we wer told the assessors would go away and discuss and I would get a call the next day. I got a call 3 days later to say they were recommending yes to the panel amnd I then got a letter confiming

Im sorry this doenst answer many opf youyr questions bvut hopefully some of the info is of some use

BW Milli Dog

[Harshacceptance in reply to Millidog]

This is incredible … thank you so much.

The 72 hour / 3 month care view I had not thought about.

I’m going to digest and make sure we are armed to the hilt with evidence.

I also learnt that we should ask for the evidence to be presented at the meeting. If it could not be provided then we should not sign it until they do present us with the full document. Basically like signing a contract without knowing the T&Cs

Thank you so much again 💪💪

[Millidog in reply to Harshacceptance]

Hi, interesting you say that about them presenting their evidence at the meeting. Has someone told you to expect that? At our meeting they went through each domain and asked me so I gave my evidence and the assessor made notes. She asked hiw I woukd score but during the meeting she was poker faced and gave no indication of her thinking or assessment of things. She took everything away and then made the decision although I did query this and asked why it wasn't a decision contributed to by all medical professionals involved. Her response was to say she was trained to assess, they weren't but she would take they written notes into consideration. The decision was made away from the DST meeting and there was nothing to sign in our case, yours may be different

[Harshacceptance in reply to Millidog]

I’m attending the meeting - mum doesn’t recognise that this is their meeting and they can invite the people in his MDT which I have asked her to do so, she won’t 🤯 as she thinks it’s not her place to do so.

The DST meeting prior to fast track wasn’t good and caused a major family breakdown - we formally complained to the ICB as the nurse assessor effectively rail roaded my mum, as dad cannot communicate well and disagreed with the scoring. The nurse said at the meeting she would not support them - dad was already immobile and catheterised and had been diagnosed with aspirate pneumonia!

Thankfully dads palliative nurse intervened and fast tracked him, forever I am thankful for her 🙏

we’re lucky as my partner is an ex palliative nurse and supported CHC as an assessor for many years advocating her patients and the paliaitive nurse from the hospice has advised … alas despite this we’re struggling …. My partner left community after 20 yrs as it became so task focused vs holistically treating patients.

We will have a very well written DST to present that accurately reflects dads needs .. I am attending and will put it on the person attending who has never met him to justify any alterations to the scoring that we have the evidence to support.

[Willowden]

I’m sorry you are going through this. It really is a distressing time.

I will let other people give CHC advice. In some ways our process with that was straightforward. Mum was given fast track, the 3 month review happened with out me even knowing and then almost a year later it was called for review again and mum passed peacefully two days before that date.

I can hear the worry and pain in your post. One thing that helped me throughout the time was counselling. I appreciate this might not be for you but if you are open to it I recommend giving it a try. I was able to access through the local hospice. Mum didn’t use their services but they offered a family support service and I took advantage of that. It helped to have someone who understood caring for mum with a terminal illness and helped me to regain some sense of perspective and strength to carry on.

Sending a big supportive hug xx

[Troubleandstrife]

All I can offer is, hospice, hospice, hospice. Your mother needs respite. She needs to be a wife. I realize that is easier said than done, but just reading your story triggers my memories of trying to care for my husband who had PSP-- The demands, emotional and physical, of that care were untenable and, frankly, traumatic. Thankfully a respiratory therapist stepped in, who also worked for a local hospice charity, and saved our lives by telling me about respite care. My husband went in temporarily for "symptom control." His comfort and my sanity were greatly increased. The charity also helped us secure CHC.

[Harshacceptance in reply to Troubleandstrife]

Thank you so much for your reply - I agree alas my poor mum won’t even consider it. I’m sorry the story triggers you and fully concur with what you’re saying.

There has been some quite horrible arguments around this and other topics. She won’t accept help in general despite things falling down around her.

As their sons we care deeply about them both however mum won’t entertain that she is important and cannot do this alone - she isn’t feeding herself properly, missing her own meds ..

I’m so glad someone stepped in to help you as it’s what we need .. the DNs are shocking in this area. It’s the hospice who has been incredible …

Mum needs to be a wife, a mum and dad - We’ve suggested dad goes into rest bite for a few days etc the response has always been he will never come out … I won’t let him go into a home.

However we get through this next stage, I wish someone could now intervene as the care plan he had in May 24 was “light” as they both wanted their privacy / independence respected however dads declined a lot, he is suffering - were at the stage of discussing feeding tubes now) and mums health is gone downward.

I’ve made sure that the CHC is done in person so they can sit with my parents so they don’t just become a budget exercise.

[MyDad1]

We were lucky as my dad got fast tracked as it turned out he had terminal liver cancer. He was in local hospital as he got admitted due to pains that turned out to caused by his cancer growing in his liver and causing the pain. I spoke to the doctor who said she could fast track it after some scans were done and she had seen the results. He also has psp which didn't help. He got moved around a few wards and then toca care home e which fortunately was local to us. He passed away there .

Hope you get sorted as I know it's a stressful time for you.