CHC funding

[K8chris]

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.

[TK-67]

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.

[K8chris in reply to TK-67]

Thank you. I do understand how difficult it can be to get CHC. It is often such an unfair system.

[Derkie54]

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.

[Yanno]

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

[K8chris in reply to Yanno]

Thank you so much Ian. This is really helpful. I will try and contact Sam at MSA. Thank you.

[Patxx in reply to Yanno]

May I have a copy of the CHC funding discussed [e-mail] -a fellow msa sufferer

[Kaye31]

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!

[K8chris in reply to Kaye31]

Thank you Kaye. May I ask more about the help you received from MSA?

[Kaye31 in reply to K8chris]

Yes sure. From filling

[Paul_and_Sue_Wood]

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

[K8chris in reply to Paul_and_Sue_Wood]

Thank you Paul.

[Whitefeather1]

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!

[K8chris in reply to Whitefeather1]

Thank you

[Whitefeather1 in reply to K8chris]

I forgot to say, Maggie now has 24 hour care.

[writerinlimbo]

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.

[K8chris in reply to writerinlimbo]

That is good to hear. I guess your husband was ‘fast tracked’. I hope he was kept comfortable

[Birdladyuk]

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?

[K8chris in reply to Birdladyuk]

So, so sorry to read this.

[Blueirises]

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.

[K8chris in reply to Blueirises]

Thank you

[Bluebarn123]

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

[K8chris in reply to Bluebarn123]

Thank you