Minor Changes to CHC Package

SAZ99

Hi,

Apologies if this is the wrong section to post in.

Got a question or two about "minor" changes to a Continuing Healthcare (CHC) package.

Some background:

This concerns my mother, who is 77 years old.

In 2017, she complained of a bad back and fever, consulted the GP, who prescribed morphine for the pain. 48 hours later, she couldn't move her legs and had lost bowel control. 20 years before, she had cancer, and as a result, was immunocompromised due to removal of nodes.

The cause of the paraplegia was ultimately pus that had built up around the spinal cord, affecting blood supply with obvious consequences. Its not a common condition, but in most cases its resolved by antibiotics with no lasting consequences. Obviously there are exceptions. What triggered the catastrophic injury will remain unknown, but morphine is known to depress the immune system, and might be the final coup de grace for a body that is struggling (fever is evidence there was an immune response).

For 5 years, she coped, with my father beoming her carer, just as he was diagnosed with Alzheimers, and she likewise. 2 years ago, things came to a head; by then they had carers helping them in the house, but some of the complications of the paraplegia meant she needed admission to hospital, and my father in respite. In respite, he suffered a fall, due to a failing heart, and rapidly went down hill after coming home, passing away 3 months later.

In the following 6 months, my mother was admitted to hospital 14 times, for a variety of reasons related to a failing colostomy and extreme pain, and a general spiral downwards, in a text book example of poor discharge management. After acquiring a respiratory illness in hospital, which ruled her out of a much delayed colostomy repair, she went into Discharge-2-Assess, which was a complete farce, and involved shuttling around different hospitals and buck passing.

Eventually, she was in a nursing home. She was grateful (probably the wrong word) to receive a full CHC package "to provide for all her clinical needs in the nursing home or at her home". Her nursing needs, due to a history of pressure sores and the controlled medication she is on, means its unlikely community nursing can provide that (she basically needs fulltime nursing, and turns every 2 hours).

Up until recently, she has had a urinary catheter fitted, initially supra-pubic. her bladder spasticity means occasionally its pushed out. Her paraplegia means it has to be refitted in hospital. As she can no longer bear on her own weight, any trip to hospital needs to be an overnight admission.

Her care home clinical manager and GP are of the mind that its better for her to be on incontinence pads than a urinary catheter, because that reduces the risk of urinary infection, which has its own world of hurt, physically and mentally.

However her CHC package only covers 4 pads per day, and anything beyond that, she/the family need to pay. Its not a huge amount, but it mounts up at £80 a month. And the need is due to her clinical status than due to natural effects of aging etc, and her usage is dictated by clinical decision making.

Getting to the question; how does one change the CHC package, with a relatively minor adjustment, before the full 12 month review, which isn't until April 2025. I'm thinking that the cost in urinary bags etc is much the same as pads. Plus we were told the CHC isn't capped as such; its all of her clinical needs. If one were in hospital, one wouldn't be receiving invoices for extra pads.

I wouldn't know if interim changes can be made, or if it will trigger another traumatic assessment process. Where would I start? I don't think I can go back to the nurse assessor.

chiarieds

Hi @SAZ99 - & welcome to the community. I'm sorry to read how much your Mum has gone through. I wonder if Beacon may be able to help; they offer some free advice, tho there are also paid services that they provide. Please see:

https://beaconchc.co.uk/how-we-can-help/free-information-and-advice-on-nhs-continuing-healthcare/

Rachel_Scope

Hi @SAZ99, welcome to the community 😊 I don't know much about CHCs unfortunately. Have you tried the link that @chiarieds has suggested? It seems like they'd be able to advise you. Let us know how you get on.

SAZ99

My sister has tried Beacon, but that was before this. They are a law firm, and in the end, I think the 90 minutes advise is basically qualifying a lead. They are more aimed at people appealing CHCs. Their paid services are very expensive, and in the end, this is about a £20 pack of pads. If you use lawyers, you don't get your money if you are successful.

We went in, very prepared, very clear, about our mother's medical needs, and there was no issue in getting the CHC.

In principal, her package is whether she is at home or in a carehome. But now she is institutionalised and isolated; the home put her in a 1st floor room, right by an open staircase. She has no prospect of leaving her room unaided, and is utterly dependant on staff to operate the lift which is on a lock. The proximity of the staircase, means the landing is unsafe for her. The other residents all seem to have dementia, so no meaningful relationships are formed.

In an ideal world, she will be in accomodation with other people with similar issues, and so a common bond. The only place in her area thats vaguely like that is full of people who are basically comatose.

Jimm_Scope

I'm afraid I am not too knowledgeable about this either @SAZ99, but I did a little searching to see what I could find. I found one site which stated

If your needs have changed in a way that may impact on your eligibility for NHS Continuing Healthcare, then the ICB may arrange a full reassessment of eligibility.

I also saw suggestion that, it is outside the usual CHC process, but you could speak to the local Patients Advice and Liaison Service at your local hospital.