CHC: Finally after 18 months of legal quibbling...

[Herdy]

Ok firstly I made Subject Access Requests to every organisation and department that had dealt with my dad so that was a local hospital, respite centre, care home, falls clinic, memory clinic, cottage hospital, social services, GP etc etc. The information that I received back was very interesting and also at times distressing, but it gave me clear evidence that I was able to use and quote directly in my appeal.

To prove complexity I got twelve pieces of paper and wrote one domain on each one. Then it was a bit like playing Snap, matching up two or three or four pieces of paper (or more!) depending on how each domain affected another one.
An example would be Continence this also involved Cognition because my dad didn’t actually know he was incontinent. He had communication difficulties so then that’s the Communication domain too, because he couldn’t ask someone to change his pad for him. He had mobility problems so couldn’t get in a bath or stand in a shower so Mobility domain comes in. So then all of those domains would have a direct effect on the Skin domain because unless a carer could anticipate my dad’s continence needs then his skin was at risk.

That’s five domains all being affected by each other in just one example. Start with one of the pieces of paper and see if you can bring the others in, the more “matches” you make the more you can show complexity. By themselves each domain might be low or moderate or high but it would be unusual for one domain not to directly impact another one.

 

[Dave63]

Ok firstly I made Subject Access Requests to every organisation and department that had dealt with my dad so that was a local hospital, respite centre, care home, falls clinic, memory clinic, cottage hospital, social services, GP etc etc. The information that I received back was very interesting and also at times distressing, but it gave me clear evidence that I was able to use and quote directly in my appeal.

To prove complexity I got twelve pieces of paper and wrote one domain on each one. Then it was a bit like playing Snap, matching up two or three or four pieces of paper (or more!) depending on how each domain affected another one.
An example would be Continence this also involved Cognition because my dad didn’t actually know he was incontinent. He had communication difficulties so then that’s the Communication domain too, because he couldn’t ask someone to change his pad for him. He had mobility problems so couldn’t get in a bath or stand in a shower so Mobility domain comes in. So then all of those domains would have a direct effect on the Skin domain because unless a carer could anticipate my dad’s continence needs then his skin was at risk.

That’s five domains all being affected by each other in just one example. Start with one of the pieces of paper and see if you can bring the others in, the more “matches” you make the more you can show complexity. By themselves each domain might be low or moderate or high but it would be unusual for one domain not to directly impact another one.

That's really useful, thank you @Herdy

 

[Palerider]

Just received the representations to be put to NHS England, they have to be in by 7th March, so I am reading and re-reading to see if I agree with the arguments or if there is anything to add. What I can see is that there is more scope now to argue over how each domain impacts on the other as well as complexity, intensity etc etc. I haven't seen the ICB records but they have been included in the representation with various contentions raised. Lets see what happens next...

 

[Chaplin]

Hi, I had to make a similar decision a few years ago. I knew it would be an uphill slog and that I might not get anywhere. Ultimately I did go ahead and for two reasons. Firstly I had LPOA for my dad, and when I signed up for that I agreed that I would be making decisions based on what my dad would have wanted, even if it went against my own thoughts and feelings. My dad would have been furious if he knew how he was viewed by the local authority! So at every step, especially when it became emotionally, mentally or intellectually challenging, I kept my dad at the forefront of my mind, this wasn’t about me it was about him. Every day with dementia was a battle for him, my own battle was nothing in comparison.
Secondly, if no one challenges the system then the system will never change.

I won my appeal, with no outside help, I left school at 16 and don’t have any fancy qualifications or anything.

Love hearing from people like you with spirit and determination! So glad you got a result for your dad but sad you had to fight for it!

 

[Palerider]

The date is set for 3rd of May at 10am and I will be attending 🤞

 

[Sonya1]

The date is set for 3rd of May at 10am and I will be attending 🤞

I've just caught up on all this Palerider, I can't believe you're having to jump thro so many hoops! It's truly awful and I hope against hope that you get the right decision on 3rd May. x

 

[Palerider]

Well one week to go before the NHS England review panel. I have a busy week, but will be reading over the documentation on Monday to be ready for the Wednesday. I am hoping I don't loose it in that review but I am not settling for anything less than proper and appropriate acknowledgement of mums domains. Its taken some time to get to this point, so I am going to ensure I am ready to challenge.

 

[Sonya1]

Well one week to go before the NHS England review panel. I have a busy week, but will be reading over the documentation on Monday to be ready for the Wednesday. I am hoping I don't loose it in that review but I am not settling for anything less than proper and appropriate acknowledgement of mums domains. Its taken some time to get to this point, so I am going to ensure I am ready to challenge.

Wishing you 100% of my virtual support with this..,.. we have 1st review due mid May which I suspect will not go in Dad's favour. It's not as though your Mum's disease progression will suddenly reverse after all....and even if she has 'improved' in some domains you can hopefully argue that that is evidence of a well managed need, rather than a need that has disappeared!! And our parents are the generation who have the longest standing contributions and have been instrumental in building the NHS - which now wants to bite them on the bum so to speak. The phrase 'evidence of a primary health need' gets me. What on earth is dementia if not a progressive brain disease??

 

[Dave63]

Well one week to go before the NHS England review panel. I have a busy week, but will be reading over the documentation on Monday to be ready for the Wednesday. I am hoping I don't loose it in that review but I am not settling for anything less than proper and appropriate acknowledgement of mums domains. Its taken some time to get to this point, so I am going to ensure I am ready to challenge.

Very best of luck @Palerider keeping my fingers crossed for you. Focus on the domains and why they should score higher than what has been given in the DST, and provide as much information as possible to prove how those domains impact on the four key indicators of Nature, Intensity, Complexity and Unpredictability. Highlighting failures in following the guidelines in the national framework won't help to achieve a positive outcome unfortunately, so with time limited in the meeting it's best to focus on just the things which will get the result you deserve. (You're further into this process than we are so I'm pretty sure I'm doing the 'teaching granny to suck eggs' thing )

We have mums LRM appeal today. Two MDT's within a six week period (long'ish story), both of which found mum eligible and both were subsequently overturned by the ratification panel. Even though we have a legal advocate sitting in on this phase the ICB have been overtly obstructive at every stage in providing any transparancy in revealing why both recommendations were reversed.

 

[GillP]

Good luck @Palerider . I hope that you are successful.

 

[Palerider]

Well just out of the IRP meeting, 3.5 hrs. The CCG representee was diabolical and actually made some favorable admissions in error. But as always I'm not holding my breath. Will be informed of the decision in approx 6 weeks. Right now I need to get of the house and go and have a coffee and declutter my head.

 

[Dave63]

Fingers crossed @Palerider - did you do the IRP yourself or did you have a representative?

The CCG representative at our appeal last week was also extremely apologetic about how the assessment process was conducted. However, they were equally vocal about failings in process not being helpful in proving a primary health need and that process complaints have to be dealt with seperately. I tried to argue that their failure to properly consider the national framework guidance was detrimental to making an informed decision. Whilst sympathetic, it was ultimately deaf ears.

I try to be pragmatic but often find myself furious at how the NHS have turned what should be a person-centric process into something which is a goal post moving, adversarial battle.

 

[Palerider]

Fingers crossed @Palerider - did you do the IRP yourself or did you have a representative?

The CCG representative at our appeal last week was also extremely apologetic about how the assessment process was conducted. However, they were equally vocal about failings in process not being helpful in proving a primary health need and that process complaints have to be dealt with seperately. I tried to argue that their failure to properly consider the national framework guidance was detrimental to making an informed decision. Whilst sympathetic, it was ultimately deaf ears.

I try to be pragmatic but often find myself furious at how the NHS have turned what should be a person-centric process into something which is a goal post moving, adverserial battle.

Just back -cleared my head a bit, though I do have a tension headache now. It is quite interesting that the original CCG assessor chose not to be present but instead passed the task on to the person who did show up, at 'short notice'. Of course that raised my eyebrows, why wouldn't you attend to defend your decision making? I had instructed an advocate simply because I just could not continue fighting battles on my own anymore and would not have done this justice in the same way mums legal advocate has -there over 1000 pages to date of evidence and scrutiny, luckily I did not have to re-read all of that or pull the main arguments out, that is what mums advocate was paid for. I did however step in and give supporting evidence and comments.

On balance the tone of the review panel was very different to the first and I felt some relief in the gaffs the CCG guy was making (actually throughout) -his summation was that mums level of needs were not above that of social care and then went on to completely misinterpret the guidance and also the Coughlin case appeal. I was actually annoyed having had to go this far at a considerable financial cost given todays effort was the best they could come up with in defending their assessment and decision on eligibility. Mums advocate was very pleased with how things went, but of course I don't want to speculate as to the outcome. Hopefully it won't be a trip to the ombudsman. We shall see.

 

[Palerider]

Haven't heard anything yet -I suspect this will go the full six weeks and possibly beyond like last time

 

[Dave63]

Yeah, we were told 6-8 weeks for our LRM outcome.

I wonder what happens immediately after the meeting? Do the three panel members discuss and decide, or do they spend 6-8 weeks reflecting? Or, do they make an immediate recommendation which gets passed up the chain of command for someone to think of a reason why everyone is wrong?

Call me a cynic if you want

 

[Palerider]

Yeah, we were told 6-8 weeks for our LRM outcome.

I wonder what happens immediately after the meeting? Do the three panel members discuss and decide, or do they spend 6-8 weeks reflecting? Or, do they make an immediate recommendation which gets passed up the chain of command for someone to think of a reason why everyone is wrong?

Call me a cynic if you want

The decision is made on the day, it all comes down to professional judgement, is then ratified and the letter posted informing of the outcome. Its over two years no since this all started

 

[whoknkows]

good luck Palerider I can't believe how long you have been fighting this and admire your spirit. A few month's ago I met with an old friend I hadn't seen for a good few years who now works part time in an admin role at a hospital, sadly her brother in law died of cancer in his early 60s. she said the NHS were ever so good to him, they found him a free place in a nursing home towards the end of his days..... I said, well surely that is to be expected? But now I realise I was naive about what care is offered. This thread is really useful and I hope to hear good news for your soon Palerider.

Herdy your methods and tips are really logical and helpful -well done. MiL mobility is down to two things a nasty broken ankle and first surgery not successful because surgeon said her skin was tissue paper thin; and dementia meaning she doesn't remember the physio and had a long wait for the physio at home - she told me 'that man was very nice he said I had bought a good china sofa....' whatever that means? It didn't mean 'yes I have some new exercises and I know if I carry them out every day I will build the strength to walk using a walker.' So the two influence each other completely and the nurse at the nursing home said exactly the same, it is the dementia now that will prevent any improvement. Her short term memory has gone, she doesn't know she had physio and doesn't remember the excercises, at one point she told me she has been out that morning to buy some chicken and was adamant she got herself dressed every day - all nonsense sadly. It is only 5 months since moderate to mid stage dementia diagnosis and a fall - the change is shocking.

 

[Palerider]

Well I received an email from mums legal team, as 6 weeks have now passed since the IRP. There will be a delay of another 21 days in receiving the decision -I'm assuming this is due to a backlog of claims

 

[GillP]

Well I received an email from mums legal team, as 6 weeks have now passed since the IRP. There will be a delay of another 21 days in receiving the decision -I'm assuming this is due to a backlog of claims

Sorry to read of the delay. When I spotted the update to your thread I was excited, hoping it meant a positive result.

 

[Palerider]

Sorry to read of the delay. When I spotted the update to your thread I was excited, hoping it meant a positive result.

Thanks @GillP -I'm not speculating as to the outcome, after so many let downs on this journey an open mind is best