Problems accessing care maybe sorted

[Tabbycat]

Polly very helpful and informative post, thanks for sharing.

[Polly]

My husband was turned down for CHC funding, even though he is unable to stand, has no use in his arms, no speech, and is reliant on his PEG for nutrition and administration of medication. Following the assessment, despite having one high score and several moderate ones, the decision was that his condition was not unpredictable, complex or intense!

We had a great deal of support and advice from a social worker from our local hospice, where he had attended day care. She encouraged us to appeal, and this time we were successful.

The following things helped in our case. I wrote a detailed letter of appeal, explaining why I disagreed with points in the refusal letter. We asked various health professionals for reports/letters of support. The fact that so many people are involved helps to show how complex the condition is. As I was having to provide so much care, the social worker suggested I wrote down everything that I have to do in the course of a day. This clearly showed that I was providing a lot of health care. And most importantly, without exaggerating any issues, I described how things were on a bad day. This demonstrates the intensity of the condition.

It is totally unfair that people struggling with this cruel disease should find it so difficult to get CHC funding.

[Ellie]

I'm really not sure where the "poorly enough" line is

That's the thing, it is not about 'feeling' poorly, it is about getting help to stay well and not get poorly - think of it as the state having a duty of care to keep you well, because you have an illness preventing you from doing just that.

Can't wait to hear if you'll have the ghost of Cilla Black saying 'Surprise Surprise' with a carer lurking behind her tomorrow morning 😂😂

[MMG]

I found that as soon as hubby had a DS1500 we didn't need to have a financial assessment for care funded by social care. The Local authority then arranged and paid for the care. The fact that it didn't work was a separate issue - I then went for direct payments and was very lucky to employ 2 lovely PA's. Still not got weekends covered though.

Now we are CHC funded, still have same process and same PA's and even had a "review" phonecall on Friday ( a month after initial acceptance) to see if we need anything else. Overnight sitters and respite offered but declined for now.

I believe you only need to score one "severe or High" to qualify for CHC. Hubby got that score for everything but cognitive ability.

It seemed quite straightforward.

[LindaB]

TinyLady take a look at a website called ‘Care to be different’ lots of free advice about CHC.

💙😘

https://caretobedifferent.co.uk/

[TinyLady]

Ellie - thank you. I'm not sure she really understood what she was doing and I have always felt such a fraud and that I don't deserve help, mainly because my experience so far has been so awful and un caring - I am still confused about my diagnosis and I keep hoping if I get poorly enough, eventually I will get the help and support I need. But I'm really not sure where the "poorly enough" line is, and sad that I am almost wishing myself worse, just so I can live a little!! You are right, I do need a lot of help. I physically cannot get myself drinks, for example.

They gave me no indication of what would happen next. She did say she would come back and see me. I asked her about my wheelchair cushion as I'm always in pain and I wasn't sure if it was a pressure cushion. I'm still not sure. Apparently it isn't a standard size so she might not have an alternative.... and that's where it was left.

Olivia H - thank you for your encouraging words. I do feel I have a tendency to fall down every crack available. I hate fuss and attention, but I feel very abandoned, which then makes me feel a fraud and undeserving of care.

Claireflo - I think my increasing care needs were identified months ago. But no one seems overly concerned about helping with them... as usual, I probably don't tick a box somewhere!

Not sure if I have carers starting tomorrow or not 😆

[Claireflo]

TinyLady i hope things get sorted out for you, you have basic care needs and should be receiving appropriate care. Hope to hear you get good news soon.

[Olivia H]

TinyLady I'm angry for you, I just can't believe people in the medical profession do not know about mnd or, given a task to assess you, did not find out the key symptoms and effects😕 My GP, when I was first diagnosed, had only seen a PLS case but sent off for a toolkit to ensure all bases were covered in terms of things that may need doing, and the mnd nurse linked to the consultant neurologist's MDT is contactable. This pot luck approach is lamentable. It's a measure of our society how we support our most vulnerable. You are using vital energy when you shouldn't have to... From what you describe, I would say you should get Continuing Healthcare Funding too. Keep battling, hoping you are almost there xx

[Ellie]

So I was visited Friday for a fast track assessment. Very quick. She asked very little and told me she knew nothing about MND and what was it

The fast track assessment should be short as the healthcare professional who referred you for the fast track, did so on the basis of need so, technically at least, you should have skipped a few steps - in practice, things might differ somewhat 😐

I just need a bit of help with everything

A word of advice for CHC applicants: at the assessment, you never need 'a bit of help', you need a lot of help 😏 This is not the time for stoicism. This is not the time to mention hobbies. This is the time to win the lottery.

You need help for nutrition, fluids, maintaining skin integrity (pressure sores), managing your feeding tube (Tiny, get one), NIV etc etc.

I have everything crossed for you Tiny 🤞🤞 Were you told that you should hear in about 2 weeks? xx

[TinyLady]

Good luck Nowheatpete with your assessment. I hope you get sorted quickly. Let me know how you get on.

shelly21 - I'm left foot onset, but it went up my left side before starting on my right side. So I am fairly limited. I can just about wash myself and dress (got no choice), but it is not great and is totally exhausting. I have so much I want to do. So many simple wellbeing tasks I just have to accept won't happen. So many hobbies too. I just need a bit of help with everything - then I can have energy left for some fun and I can safely choose to take medication and intervention as needed!

[shelly21]

TinyLady you are not alone in the loss of independence. I'm at a very similar stage. I'm bulbar onset so speech is very poor. Right arm useless, left arm ok but signs of major muscle loss. I'm in my power chair and over the last two weeks I've also struggled transferring without help.

But all these things come under your need for care. You cannot do it safely on your own.

I've got everything crossed for you. Xx

[Nowheatpete]

TinyLady good luck with everything. It sounds as if you’re having quite a battle. I, too, have somebody coming to assess me for carer support next week. Keep us updated on how it progresses.
Take care.

[TinyLady]

JamesW - thank you. I tracked down a care agency who agreed to meet me and when they visited they were very shocked at the lack of support in place and got straight on the phone to my GP for a fast track assessment which was done Friday.

I'm worried though as I fall through every crack. The fast track assessment didn't really ask me much and the community nurse who did it said she had no idea what MND was and asked me to explain it. But I was on the spot and no idea what I'm supposed to say. I was so upset by the number of lovely, but clueless people I encounter.

I hope I qualify because then this care agency will support me at last. But I am so scared of how little say or control I have.

shelly21- they simply didn't assess me. I think they all assumed it was done by someone else. Maybe the GP should have when the DS1500 was done, or social services etc. I think here the OT usually doesn't, but she is still off sick.

Please keep everything crossed it is agreed and I finally get care. I discovered today I can no longer stand up from my chair without help which was upsetting and another piece of independence gone.

[shelly21]

TinyLady I so agree. You deserve to have a better quality of life. I haven't got a clue re chest sorry.

They have blatantly lied or omitted parts which is still wrong.

I just wish someone would help you and your family x

[JamesW]

Hi Tiny,

I qualified for my CHC budget last spring. My OT and social worker held off completing the application until we knew I had reached a point that I would pass the assessment.

Initial assessment document is here:

https://www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

Bullet point 15 tells you what you need to score in order to qualify for a full assessment.

hope you find this useful, James x