Just wondering if anyone has applied for and been approved for CHC. If you have applied (and succeeded or otherwise) it would be interesting to hear your journey.
We are about to go through the process, having spoken to both our GP and District Nurse. Also spoken to our MS nurse who was quite defeatist and said of all the 300 patients she knows only one has ever applied and they were turned down. Reading around the net MS is one of the illnesses quoted when related to CHC (along with dementia, Parkinsons etc) so I was a little surprised that the MS nurse didn’t know anyone who has quallified.
For info, my wife has SPMS, is at an advanced stage and at EDSS 8-8.5 . Physically she needs a lot of help to do everything but cognitively she is still (thankfully) good.
Funded Nursing Care is a more realistic option for most people. For CHC, you need to be (as I understand it) insensible and surviving through tubes going in one end and out the other, pretty much - really intensive nursing needs. Definitely worth an assessment though, and the sooner the better. Their assessment backlog is months if not years long, and FNC is worth getting even if CHC is unavailable.
Hi, I recently asked for a care plan re-assessment. The Social Worker brought the CHC bods on board. I was surprised to hear I would become anywhere near the criteria for their input and was very surprised to learn I did. What it meant was the council got 50% of my funding from them…as well as a £40 a week contribution from me. So it kind of felt that she was just looking to cut the councils cost! My needs are high but am fully compus mentos. I have PPMS..and am 8 ish on the scale like your wife. I have carers coming in twice a day to do 27 hours, plus 2 sleepovers a week. Owt else youd like to know?
It’s really hard to know how my wife fairs against other MS sufferers as the others we know are still fairly well. Our MS nurse says she has 300 patients, none of whom have CHC, although she said only one applied and was rejected and never tried again. The nurse is quite negative about us applying, but she can be quite negative generally so we don’t take too much from that!
What we can’t assess ourselves is how dependent my wife is. I know I can’t leave her for more than 60-90 minutes on her own as she can’t empty her own catheter bag (I could put on a night bag which is what the MS nurse says to do). On a good day my wife can sit up straight in her chair, on a bad day she can go ‘floppy’, and is at danger of falling off her chair. She can’t right herself or position herself on her wheelchair or riser/recliner chair.
Like you she is fully cognitive. She still works (from home) 3 days a week; I stay at home all day to ensure she has water, food, etc. When eating she does sometimes choke and I have to help her, she coughs a lot whilst eating (and sneezes … is this common??). She has been referred to a swallowing expert to see what’s going on.
She can’t dress herself, transfers are all done by me with no help from her. She can’t turn herself in bed so I do this 2-3 times each night (she has a hospital airbed provided by NHS).
We don’t have any carers at the moment as I have given up work to be 100% carer.
MS Nurse says my wife just needs ‘social’ care and hence would not qualify for CHC, but I would argue that I certainly couldn’t leave the house during the day to go to work, and we only have a carer in for an hour or so through the day to provide ‘care’ - due to the risks to her health for me this is more than just care but there are nursing needs too.
It will be interesting to hear what the CHC assessors say once they engage with us.
Hi again Just to clarify, who`s idea was it to approach the CHC? As I said previously, it was a Social Worker who brought them to my door. They agreed there is a nursing input for my care…I have district nurses to change my catheter and check for skin health monthly. Do be careful of becoming a full time carer…it can be wearing. Hubby is 71 and I am 67. I don’t think long term it is a great idea.
I had an accident transferring my wife from bed to wheelchair a couple of weeks ago - put my back out quite badly. Was stuck on the floor unable to move for an hour. Thankfully I had managed to get her safely on chair so she didn’t end up on the floor with me. Took me an hour to get to the phone - tried MS nurse, social services, local GP but there was no one available to help us. Thankfully I got hold of my Mom who did come over for a few days to help.
This triggered extra contact with OT, social services etc. For now I’m happy being a full time carer, but having the option of some respite paid for by social services or NHS would be a nice option.
My wife is currently on weekly catheter changes by district nurse. Bloody thing keeps blocking leaving her in retention - we’ve tried everything to fix this, including tests etc. The urologist is pulling together a plan for us which hopefully will push catheter changes to at least 4 weekly. The nurses are obviously concerned about the risks of infection to changing catheter so frequently and my wife has been susceptible to UTIs over the past 12 months.
At the moment I don’t seem to have a choice but to be a full time carer as there are no local options for us; we’re hoping someone can help us out. Just a little respite would be nice every now and then
Hi again Freddy. Oh dear, the fall made me wince with concern for you and your wife. Have you got a hoist for transfers? I had a portable one initially, but it was difficult to use and house, so we went for a ceiling one…well 2 actually…1 in lounge and 1 in bedroom. You really need a person called Handling & Moving Technician to come and asses for a hoist. The portable one is free…the other needs a DFG…disabled facilities grant…I got help with that with an MS grant from the local branch. I believe you 2 are at serious rick of injury and need an urgent referral for a care plan. We have something called Gateway to Care, who would handle this. Do you have similar? AS you are open to the idea of carers,
Hi, yes, the fall was ‘fun’ … not! Thankfully my wife was safe and only me injured. On the back of that little incident our OT got us a portable hoist and we have been shown how to use it but, as you say, it’s a bit cumbersome. I think we’ll use this for emergencies only, i.e. when I’m feeling tired or not well; the time it takes to sort out though, get in place etc, I’ve already transferred my wife so (timewise at least) it doesn’t offer us a lot.
We have a second hoist now too over her hospital bed. We are waiting for someone to come and show us how to use this although I could probably work it out if I needed to. We’re also waiting for an extra sling too, one that could stay in situ on the wheelchair/reclining chair all day to reduce the need to keep sliding the standard one in as this is what takes all the time and is really hard to do due to my wife’s body spasms.
I’m sure we’ll get there although we are I’m afraid both stubborn; we try to hold on to what little independence and ‘normality’ that we can for as long as we can. As I get older we’ll have to stop being so stubborn as I won’t have the physical ability to deal with the starin, but for now I’m still young enough (50) to do this.
I have only just noticed this thread. My husband has MS. He began receiving Continuing Healthcare in 2015. He has a personal budget which pays for carers and equipment. It wasn’t easy to get CHC, mostly because they don’t want to give it out. They want to send you in the direction of the local authorities. It has been a battle. You need to read all documents about CHC and understand how it works. The main thing to understand is that although guidelines are mentioned they are actually statutory. So when I was told " we don’t do that in this area" I told them that they didn’t have the option to refuse.
Continuing healthcare funds social care along with personal care. Once you qualify for CHC it’s the local CCGs responsibility to cover all health and social care needs.
Hi I don’t mind people picking my brains about CHC because I suddenly have more time now. Unfortunately my wonderful husband died very suddenly a couple of hours after I posted the comment. No matter how disabled he got he never complained. I miss him.
I have, and it was a significant relief. It took us some time to understand how to do it. Luckily the medical system in Australia is much cheaper and, in my opinion, organized when we refer to such conditions. We feel privileged to have functional medicine Melbourne to rely on every time we need a good consultation for cases that seem unsolvable by the regular hospital doctors. I had a lot of progress with an unknown allergy that I could not find on top of my CHC, which made my daily life unbearable. Still feeling blessed to have this medical center so close to my home.
