Continuing health care

[Guest]

Hi, to date I have not really had an answer of anybody or group, I wonder if anyone on the forum can enlighten me, what and when would you consider someone qualifies for chc and does anybody on the forum have CHC and still live at home, at the hospice they said I would not be able to get chc and be living at home, you'd have to be in a care/nursing home, after visiting the hospice, we get home and the district nurse is on the phone, offering maybe up to 3 nights a week with a marie curie nurse to sit overnight, this will be a massive help to me, so I can get a nights undisturbed sleep, she also said she would asses my wife for CHC
Any feed back I would be very grateful.

dave.

[shrew]

I think Penwiggle ‘s late friend was on this and at home?

[Kayleigh]

Hi David,

The NHS guidelines (link provided below) say that CHC can be provided in a setting outside hospital such as at home or care home.

However, it could be the case that the setting where care can be provided varies between different NHS Trusts. Each Trust may need to take into account the level of care a patient needs and also what resources the Trust has available to provide the care.

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

From the information in the NHS guidelines, and from what you have said, it looks like the nurse is going to do 'the initial assessment' for your wife's CHC. The NHS guidelines are quite detailed, but I expect the nurse will talk things through with you and your wife before the assessment takes place.

Best wishes,
Kayleigh

[Barry52]

Hi David,

My late friend had CHC and he lived at home with his wife and 8 year old daughter. The arrangement was that following assessment he was granted a sum of money and his wife used this to pay for carers which allowed her to continue working and looking after the family.
I understand that by law if you qualify then the NHS must comply.

Best wishes,
Barry

[Kayleigh]

Hi Barry,

Very sorry to hear about the friend of yours who passed away. My condolences to you and his family.

Thanks for the interesting info about CHC - good to hear that the arrangement gave your friend a certain level of flexibility concerning the provision of care, so that his wishes could be respected.

Unfortunately, it looks like applying for CHC might be as complicated/time consuming as applying for PIP!

Best wishes,

Kayleigh.

[met-rx]

My father has CHC and is at home. The CHC covers his carers, who visit a couple of times a day, and also any respite he has in a care home. It would also cover him if he went into a care home permanently. I think there was a lot of form filling involved and you need a letter from your GP/consultant.

Regarding the Marie Curie nurses, I tried that to help my mum get a few nights' sleep. I was told that they wouldn't offer anything unless the person affected was in the last few hours/days of their life, so would not be applicable for us.

[Guest]

My father has CHC and is at home. The CHC covers his carers, who visit a couple of times a day, and also any respite he has in a care home. It would also cover him if he went into a care home permanently. I think there was a lot of form filling involved and you need a letter from your GP/consultant.

Regarding the Marie Curie nurses, I tried that to help my mum get a few nights' sleep. I was told that they wouldn't offer anything unless the person affected was in the last few hours/days of their life, so would not be applicable for us.

Thanks for the reply's, its uncharted water on this for me, have to take what comes and see, had another sleepless night .
dave.

[Kayleigh]

Hi Dave,

I really feel for you and other carers who have little or no help. Having to do everything yourself and having very little rest or sleep must be exhausting.

It sounds like you need your wife's initial assessment for CHC to be carried out urgently, and I hope that the Marie Curie will be able to do that very soon.

I do not have experience of applying for CHC, but is this assessment something that could be carried out by your wife's district nurse, if you are going to have to wait a long time before the Marie Curie nurse is available to do it?

I understand that CHC is not means tested and that if we do qualify for it, it is fully-funded by the NHS. That is a good thing, but it appears that applying for CHC is, unfortunately, very complex and time consuming.

We have the other option of getting a 'needs assessment for care' from our local authority - however, that provision of care is means tested - my understanding is that it is only fully funded by our local authority if we have savings of less than £23,250. (The value of someone's property is not included in means testing if the care is provided at home).

I really do hope that the Marie Curie nurse can start providing night cover very soon.

Best wishes,

Kayleigh

[MNDConnect]

Hi Dave,

Unfortunately, Continuing Healthcare (CHC) can be extremely difficult to obtain even with a diagnosis of MND, as it has a strict eligibility criteria. CHC is usually awarded once someone has complex medical needs. Once these needs increase , it should trigger a checklist assessment which would be carried out by a Health professional who knows you well, such as a Specialist Nurse, Occupational Therapist etc. If you scored enough points in the assessment, a full application for CHC would then be made.

If you would like further guidance regarding the eligibility criteria and application process for Continuing Healthcare, there is a specialist organisation called Beacon, who offer up to 90 minutes of free advice on CHC. You can call them on 0345 548 0300 or visit their website: http://www.beaconchc.co.uk/

We produce an information sheet on CHC which you may find helpful, please see the following link to view this https://www.mndassociation.org/wp-co...healthcare.pdf

I do hope this is helpful. If you have any further queries, then please do not hesitate to contact us again.

Kindest regards,
Prachi

[MNDConnect]

Additionally, as explained by Kayleigh in the above post, if someone with MND does not meet the criteria for CHC, then a Care Assessment can be carried out by Social Services. Care provided by Social Services is means-tested and they would assess to decide if they would pay for a care package or if the person living with MND would pay for the care package or if it was contributions from both.

When looking at care from social services, it is means tested. If someone has savings over £23250, then they would have to fully pay for the cost of their care. If they have between £14250 and £23250 in savings, then they would have to contribute towards the cost of care, the amount that they would have to contribute is on a sliding scale depending on the individual’s savings. If someone has below £14250, then usually they would not have to contribute towards the cost of their care.

Age UK produce a factsheet that explains these care assessments in further detail. Although the factsheet is titled ‘Paying for residential care’, it does explain the breakdown of the care assessments , please see the following link to view this http://www.ageuk.org.uk/Documents/EN....pdf?dtrk=true

We produce an information sheet on social care that you may find helpful, please see the following link to view this https://www.mndassociation.org/wp-co...ocial-care.pdf

Kind regards,
Prachi

[Kayleigh]

Hi Prachi,

I don't need to apply for CHC for myself yet, but read with interest your reply to David which mentions that CHC is extremely difficult to get.

I am trying to plan ahead for the provision of my care. I take it that if I don't get awarded CHC, I could be in the position where I am left to 'muddle' along and manage by myself, with whatever help my family can give me when they are not at work etc

I have not looked into the option of paid carers/nurses yet, but I imagine they are going to a prohibitively expensive alternative to CHC funded by the NHS.

As funded care via the local authority (social services) is means tested, I might not get that either.

In theory, I could be in the position where I have an urgent medical need for CHC, but am left to manage without it because it is too difficult to meet the medical and administrative requirements for it to be funded by the NHS.

It is rather worrying really - but I expect that I am not the only person on the forum who is in this situation!

Kind regards,
Kayleigh

[psj]

Hi.

This is my first post although I have been reading posts for the last 2 years plus.

I am a carer for my husband. He's coming up to 3 years with symptoms.

He got CHC fast-tracked 6 months ago. He does have, however, what I would term "global " MND i. e. all functions deteriorating pretty much simultaneously, District nurses did it. However, CHC would not pay for the best care agency in the area. After 2 hospItal admissions in short succession which left him immobile and nil by mouth, they relented. However, I was repeatedly told that this was the maximum and, if I couldn't cope, he would have to go into a home which was what the hospital discharge co-ordinator was pushing for. So, he got 4 visits a day by 2 carers, 2 x 4hr respite for me, 2 nights (although I was told this was pretty exceptional -it only came about after I was on my own at night after the discharge with no provision from Hospice at Home or Marie Curie). Then 3 weeks ago at a review, it transpires that this is not the maximum and that there is a higher band that no one told me about! All his visits by 2 carers have been upped in time, he has 1 carer for 10 hours per day and 3 nights. In addition to this, we have Marie Curie-usually for 2 nights a week. They are exceptional. That you have to be at the end of life for their nightsits is nonsense! My husband is NOT end of life.

I guess we have been lucky to some extent that district nurses did everything at the right time. However, I was told ages ago, that when I started to struggle, it was a sign that CHC should kick in. And this is exactly what happened.

Hope this can be of some help!

[Kayleigh]

Hello psj,

Welcome to the forum. I am sorry about your husband's diagnosis.

Thank you for sharing your experience of CHC provision for your husband. It sounds like although we may have a genuine medical need for CHC, it is something that is 'held back' from us and we really have to fight to get it. You must have had enough to deal with without having to 'jump through hoops' to get the funded care that your husband is entitled to. Thank you for letting us know about the existence of a higher band, which we may not have previously been made aware of.

The prospect of applying for CHC fills me with dread - it is enough for me to cope with the day-to-day challenges of having MND, and I really don't think I am going to be well enough to cope with the complex assessments/bureaucracy of applying for CHC. I will probably have to manage the best that I can, with whatever help I can get from my husband who works full-time.

Hopefully, things will go smoothly for David (on this forum) and his wife, when she has her initial assessment for CHC.

It is heartwarming to hear how the wonderful Marie Curie nurses have been so caring, helpful and supportive.

Thank you for making your first post on this forum. It is lovely to hear from you and very kind of you to share your knowledge with us. Please feel welcome to post again, whenever you would like to.

Love and best wishes to you and your husband,

Kayleigh x

[Guest]

Hi kayliegh, marie curie are coming Tuesday night to sit, got told they would ring prior to coming, to night the phone rang, it was marie curie office, said do we want a marie curie nurse for tonight as well as tomorrow, as my wife had a bad turn earlier, and had to call the doctor out, its left her very shaken, so we declined the offer for tonight, besides the room was not set up for the nurse (arm chair) in there for her, was going to sort that tomorrow, the doctor did say he is going to ring social services tomorrow and play hell with them for not setting carers up yet, he was morified when I told him it was 5 months before we got allocated a social worker, somebody's ears are going to be burning tomorrow.
What I am annoyed with, if you qualify for having sitters in over night, the nhs only fund for 3 nights, so your not ill for the other four night!!!


dave.

[Guest]

Hi pjs, my wife is in pretty much the same state as your husband, all this within 6 months of diagnosis, I feel for you.
dave.