Hello, just wondering how many people with MSA have been able to get CHC funding? I appreciate everyone will be at different stages. My friend is bedbound, doubly incontinent, fed by peg, has recurring bouts of aspiration pneumonia. He is due to go into a care home and currently waiting for an answer on CHC.
CHC funding: Hello, just wondering how... - Multiple System A...
CHC funding
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K8chris
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Hi Chris. Sadly it is very very difficult. I'm assuming that your friend is going into a home with nursing care? CHC will separate what are 'care' needs and what are 'nursing' needs.
Despite the fact that my mum's 'nursing' needs were being met because she was in a nursing home, we failed in getting CHC. It's a mad system and weighted against the applicant.
We found with mum that despite the complexities of her condition we were denied CHC twice, sadly it was only awarded when she was end of life and needed a syringe driver to manage this. So we had to self-fund her care.
I'm so sorry I can't be more positive, I hope you may have a different experience.
Hello,
I looked into this after my wife had a stroke recently.
As TK-67 said it's down to whether it's care or nursing I believe.
My wife needs help with everything now and spends up to 20 hours in bed.
She needs to be hoisted for transfers and fed, dressed etc etc.
This counts as care and not nursing I'm told, MSA and 2 strokes is not enough even if it's around the clock care that's required.
Good luck with your claim I hope it's successful.
Hello Chris. We discussed CHC funding at our 4 Counties Support Group last week when we were joined by the MSA Trust welfare and support manager. Sam commented that securing funding is very difficult, however it is somewhat of a postcode lottery - what is easier in one location is difficult elsewhere.
Sam provided us with a very useful overview of CHC funding which I emailed out to the members of our support group. It may be useful for you to get a copy from Sam at MSA Trust, or send a chat to me (chat icon at the top of the page) with your name and email and I will forward a copy to you.
I hope this is helpful...and good luck.
Take care, Ian
Thank you so much Ian. This is really helpful. I will try and contact Sam at MSA. Thank you.
May I have a copy of the CHC funding discussed please-patcnash@gmail.com -a fellow msa sufferer
yes we have it. It was an easy process with help of MSA. We’ve had it since last year and only now has a care package been found albeit it hasn’t kicked in yet!
Hi
I managed to get partial CHC funding for my Sue.
You need to prove medical intervention to get the funding. Washing, moving, dressing, feeding are social care. My Sue has a a PEG fitted and thus all medication and feed is fed through the tube which is medical. She also has pressure sores which is also medical. There are many different criteria you need to fulfil for the scoring system.
Also you will need to get care professionals help and support.
Use MSA trust as they are well versed in helping sufferers.
Good Luck.
Paul
Thank you Paul.
Hi Paul, do you mind me asking what splityou got for partial? We have just had our assessment and the CHC Nurse and Council Social Worker agreed triggered CHC partial funding (but not full) and they have suggested 50/50 split. The exact split will be confirmed at the higher level meeting. Her suggested care package is 33.5hrs a week. It would be interesting to understand what others were awarded. Mum has a pressure sore, wont have a peg but has been recommended one so she's having a minced and moist diet and needs help with feeding and drinking. Its all so complicated isn't it!
Hi,Sue had a 50/50 split funding.
She has carers 4 times a day 7 days a week.
It can be taken off you also if the medical needs are no longer required.
The CHC is not means tested but the social care element is.
I would highly recommend PEG before it's too late and then life threatening illnesses become more often.
Good luck
Paul
Thank you. Apparently because she’s on medication 6 times a day and she needs help taking the medication then that’s also the nursing need (not a care one). The low blood pressure and fatigue resulting from that is a nursing element, so is the falls risk. The MSA Nurse wrote a letter setting out the issues faced in medical terms and risks associated. Hopefully won’t be taken off her but mindful it’s reviewed. Mum will end up self funding the Council social care element as she gets my dads pension which gives her a good income. Her limit is set at £389 a month (care at 50/50 will be £350) but I’m trying to get this reduced to take into account increased heating, electric and water and food costs but that’s proving a bit of a fight!
Did you manage to get holidays in your care plan? I’ve just been looking at mobility accessible rooms in London and they are very expensive! Also I’ll have to do all the caring and not sure you can get temp local care input as part of the care plan?
Hi,If you can get the money paid direct to your mom so you control who does the care.
We go to a bungalow in Cornwall that is purposed for disabled and we hire additional equipment. We take a carer with us so I can also get a rest.
Paul
We have struggled with coordination own care through agencies so we are going through social worker this time but in conjunction with CHC nurse giving suggestions of good care agency. Thankfully our social worker is ver old school and on it and they know we have already had 6 care agencies and that we need a good one with nice and efficient staff. So I am hopeful (which is all I can be!). Does the CHC part fund the cost of the carer you take?
Hi,Our council funds the total care package and claims 50% off CHC.
We tried a few care companies, but it is all about explaining and assisting each other.
Once you've found one keep with them and also help new members as MSA is complex care.
Paul
Hi Chris, I managed to secure this for my friend last year. She lives alone, which may have helped and had two carers in four times a day, plus overnight care. Maggie was paying a top up fee for this. At the time she was suffering with severe anxiety. She's lost all mobility and bladder and bowel control. She was assessed at home by a CHC nurse, who was absolutely lovely! I was actually dreading the meeting because of the stories I'd heard about them. I will say though, Maggie was having a particularly bad day the day he came.( not that that should matter! ) Maggies care company also helped letting them know her needs were changing almost daily.
I saw someone else mention that where you live can factor in, we're in London, Lewisham borough. I gave the CHC nurse the details of Maggie's MSA trust nurse and OT to contact but he didn't contact either. Good luck!
Thank you
I forgot to say, Maggie now has 24 hour care.
If she got partial funding do you know what the split is? Does she get 24hr care at home or did they force into a nursing home? Did you get to pick the nursing home (is so)?
Maggie stayed at home until she passed away this January. She had 24 hour care.
When Maggie paid a top up, before she was funded with CHC, I think it was about 30%. I just seem to remember she paid around £300 and something a month. That was paid to Direct payments. She was fully funded for CHC.
Was Maggie bedbound at that stage or still able to move around? I just don’t know what’s for the best really! She wants to stay at home but then she’s also very sociable and unfortunately I have found that a lot her friends have distanced themselves from her which she has found very upsetting! I am furious, I mean you can’t force people to care and I am sure it’s upsetting to see her struggling but we all just need to crack on to do nice things for other people. Or that’s how I operate. I’m at a loss really! Nursing home or keep her at home, it’s just all very stressful isn’t it! Not knowing what to do for the best.
Hi, Maggie was able to be transferred from bed to chair to commode with two carers and a Sara steady. Her bed was moved to the living room.
The only time Mag didn't get out of bed were the last three days of her life.
She didn't want to go into a care home, she tried respite in one place for four weeks and it was horrendous, that put her off. She wanted to stay at home or go into a hospice. I promised I would do what she wanted. The end was so quick though that she stayed home.
I went to see her every day and other friends popped in too, and her carers were there 24/7 so she was never alone. The carers weren't great though, I've had to put a report into the CQC. It's a hard decision, but Mag was still " with it" her brain was still the Maggie I'd known for 40 years. It was extremely hard watching her deteriorating, so I really understand what you're going through. One bit of advice Mag always gave me was " Do what's best for you "
Caroline
I think that’s the problem, their brains are all still there! They know when they are being treated badly by the carers or when people make snide remarks! We are on our 6th care provider in 1.5 years! It all makes her anxiety worse (and mine). She is also very vulnerable as she is so reliant on the carers, it’s a massive worry.
That’s why I would only be able to put her in an Outstanding Nursing Home in the hope that it has better carers and management overseeing carers.
Did Maggie have two carers 24/7 then or did another one come in to support at certain times of the day?
I know she would hate a nursing home but she will go in one to make my life easier. But then will it when I have the guilt of putting her in there! I already have so much guilt to try and deal with from the circumstances leading up to my Dads death seven years ago. I know I was ‘only’ 31 (living in London so mentally living like a 21 year old) and stupidly thought he wouldn’t have been released from hospital with no care or follow up if he wasn’t ok! I now know exactly what the NHS is like, but sadly far too late!
I just want to be transported away to somewhere that I can pretend I don’t have all this responsibility and just experience being a new mum, although somehow she’s turned 2 in amongst all this and I feel like I missed it all. Although it’s not all my Mum, I’ve also had to really fight with my employer to get part time working approved so that I can manage all this, that was absolutely horrendous too!
Maggie had one carer from 8am - 8pm, with another one coming in 4 times a day to support with mobilisation. Then another from 8pm - 8am.
I understand the guilt, I felt that too, always wondering if I was doing enough. And doing the right things. I actually made myself quite ill and it's taking time for me to recover. My Dad also passed away during this time, the week Mag was diagnosed with MSA he passed away after a short diagnosis of a brain tumour. I looked after him at home in the last week of his life.
I did have a full time job but after Dad passed I left and managed to get a part time position elsewhere which meant I could care for Maggie.
Do you have hospice support? They were an invaluable support. Also, call your Mums MSA nurse, explain the situation.
Macmillan applied on our behalf for emergency CHC funding and it was agreed within 24 hours. It constituted 2 carers twice a day for 3 hours in total. We were offered more help but didn't want it as this quantity of strangers (24 different people in 2 weeks) was hard enough for my husband to accept. Remained in place for 3-4 months until my husband's death. The real difference it made was I could cope enough to keep caring for him at home. This was in 2021, with all resources stretched by Covid.
That is good to hear. I guess your husband was ‘fast tracked’. I hope he was kept comfortable
They put my poor husband and myself totally through the mill, and when I asked them not to mention certain things in front of him in case he was having a 'cognitive' day, they did the opposite. I thought more than enough boxes had been ticked, but they turned us down as not quite ill enough. Two weeks later they contacted me about a mistake they had made - I replied that it was now irelevant as he had just died... Don't know how sick you have to be?
So, so sorry to read this.
Dear Chris
I can only echo what others have said. It is very difficult to obtain CHC funding. A couple of suggestions, if you have a Parkinson's nurse or a Hospice contact ask them to attend the meeting with you and, it's not good to do, but emphasise the worst scenario and that it will only get worse, try to gear your responses to the criteria they use for assessment. My husband did get funding and it's not only money. It seemed to open the door to further help and advice and action, e.g. when the local authority didn't have the bed that was needed one was hired for him from a private company until one became available. Their Occupational Therapist was particularly helpful.
I wish you well.
Thank you
Hi,
I managed to secure full CHC funding for a lady I look after who has MSA-C .It is very difficult to secure but it massively helps your case if you highlight every single area the person needs support with,all the equipment needed,and then add what the negative impact would be if this support/ help wasn’t given.Care network,medications,equipment,nutritional needs,mobility issues,nighttime support,breathing needs etc all need to be gone into in detail along with the amount of time taken to perform each task.The unpredictability of MSA also needs to be highlighted.
I am more than happy to give general guidance to anyone who would like support with their application
Thank you
we have it just had our first review and it’s continuing
Yes, we have had funding for complex care for a year now. Peg feeding and medication through peg, catheterised, communication needs all counted. We have 30 funded hours a week. Plus just about to start 2 nights a week. I do the rest
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