CHC Frustration

[GeorgeMMXVI]

Dear all,

I recently requested that Mums nursing home complete another CHC checklist because of a decline in her condition. We went through the DST in March of this year where she was refused funding but was awarded Funded Nursing Care (I believe the nursing home were already claiming this) Since then she has lost all communication, lost 14.3kg in weight, weighs just 35.6kg and can only manage small amounts of pureed food and thickened liquids (fed by others). She is on transdermal patches (Buprenorphine) for pain and her GP has prescribed anticipatory meds. This was the response I received from the ICB:

Although the outcome of the Checklist indicated that you meet the threshold to proceed to a

full CHC assessment (DST), in this case a previous full assessment (DST) had been carried

out on 11/03/2024 and you were found not eligible for NHS Continuing Healthcare, but

eligible for Funded Nursing Care (FNC). Comparing both documents, there does not appear

to be any significant changes to your presentation since the previous DST therefore a further

full assessment will not be necessary at this time.

A further Checklist can be completed if there are any significant changes in your

presentation

Aaaaaahhhhh! There have been significant changes hence requesting another checklist. The whole process is so frustrating and deliberately obstructive. It does make you feel like giving in

Sorry for the rant.

Nicki x

[MullerRice]

Absolutely no need to apologise for having a rant on this forum, as I 've said before, this is partly what this is for, and unfortunately CHC seems to be a hot topic! My thoughts are with you.

[Millidog]

This is both frustrating and heartbreaking for you. Just a thought. Could you rather than the nursing home fill in the checklist so you have the opportunity to put in the full amount of detail of the changes and evidence against the criteria

[lunarquasar]

Hi Nicki I think you would be able to ask for an RPAN which is a Request For Previously Assessed Needs as long as it is within a year of the initial assessment. I had to go through this for my wife after initially being refused which thankfully was approved as her condition had deteriorated. She also was initially awarded funded nursing care if she was to go into a nursing home but I have kept her at home. Hope this helps, it is a battle.

Barrie

[Troubleandstrife]

This infuriates me. We were "lucky" I guess. The hospice where my husband received temporary respite care applied successfully, after a few tries, for CHC coverage so I could bring him home to die surrounded by his family. I am not sure how it works with nursing home residents, but I feel deeply indebted to the hospice staff for securing amazing, funded, care for his final three months.

[David750]

Hi Nicki, in addition to the valued experience and support given here, as you are in the UK please phone the PSPA Association's Helpline (pspassociation.org.uk) and speak to the Health Care Navigator for your area. She will be able to help. The PSPA are currently gathering information on the circumstances of CHC funding failures and successes. They will be keen to here of your situation. Success I have heard about have always had a health professional involved in completing an application, they better understand how to word the answers. All my very best wishes at this difficult time for you.

[captainsdaughter]

Hi Nicki

I share your frustration and although I secured CHC funding for my dad in a nursing home it’s not an easy process. The assessors we had were lovely and had experience of PSP and actually said the process isn’t designed for neurological conditions at all. I was advised to also complete the assessment form, which is not compulsory for us to do, but I’d highly recommend doing it as your perspectives on the condition are taken into account by the assessment team. I was told to fill it in based on my dad’s worse day, not a good day, as we know PSP can be quite variable. Like others have said ask PSP association for help, and there is are also solicitors called Beacon who specialise in CHC process and offer free initial advice.

Good luck.

[messier]

The most important thing to remember is that it's about clinical need not care need. So focus on complexity of managing medication particularly for pain, risk of choking, danger to themselves or others, problems with catheters. Just having to feed someone doesn't count. Having a catheter doesn't count if it just needs 'normal care'. Not being able to move, see or talk doesn't count unless there are pressure sores, or they can't communicate health problems like pain.

[Richard33 in reply to messier]

Messier,

Thanks for that. That seems like fine advice. We are about to apply but I am not hopeful....🙄.

Richard 🙂

[BrianGoodier]

Hi Nicki, This seems to be a THING! Our CHC funding has just been withdrawn. We are busy with ab appeal at the moment. Brian has been rushed to hospital twice in 2 months, so the mountains of paperwork we need to complete has been on the back burner. All medical staff who know him are absolutely horrified that they can say his needs aren't complex. We have received letters to this effect from different departments of his medical team. Here's hoping our appeal is successful.

Wishing you luck with this ridiculous battle!

Ingrid

[Harshacceptance in reply to BrianGoodier]

I read this with dread. My dad has his review next week.

The CHC person who contacted my mum actually opened the call up with I’m sorry to bring you bad news!! As if they have made their minds up before.

Dad has been fast tracked since May … has not miraculously stabilised or been cured and his condition continues to get more intense and unpredictable … as I left the house at 6am for another emergency yesterday morning.

To have CHC withdrawn at any stage when our loved ones and family are in the mindst of such a cruel illness is quite frankly immoral. To then have to progress through an appeal is disgusting when you are dealing with patients and their families who have little energy left to fight and should be entirely focused on their loved ones.

I wish you the very best of luck

[BrianGoodier in reply to Harshacceptance]

As you say, disgusting, it's as if they have no compassion or empathy!Wishing your family good luck with this horrible process as well. Xx

[GeorgeMMXVI]

Thank you all for your considered responses. This site is a massive support xx