Looking for support with NHS continuing healthcare

Aardvark

Hello Everyone, 

I am being moved to NHS continuing healthcare from adult social care direct payments. 

The checklist, decision meeting etc have all happened and they have phoned to say I have been approved for full CHC funding. 

I have also been told this is a good thing and the right outcome by all involved. 

I am now waiting for NHS team to come out and draw up a support plan and make it all start. 

I don't know what to expect, I am more than a little scared.  I understand the Adult care DP system and care act so I can advocate for myself but I cant find info on CHC support plan criteria.

I am a 'working age adult' who is not able to work due to disability.  I live in my own home.   I type this as a lot of the info out there is for people applying for CHC for nursing home care for older family. 

Can anyone point me to a source of information, online CHC community or better yet share a bit about their own CHC funding package. 

I have amazing PA's under Direct Payment Adult care and really dont want t lose them.

Thank you

Ross_Alumni

Hello @Aardvark, thanks for making this post. 

I can understand why you are quite worried about this, but hopefully everything goes well and you have a smooth transition There is this page on the NHS website about CHC, but I imagine you may have already read it or be aware of the information.

When will the NHS team be coming out to draw up a plan for you?

Aardvark

Hello Ross

Thank you so much for replying.

AHH when?  The million dollar question when it comes to these things. The answer I have been given is 'it may be a while', like all things NHS/Social care they dont like to give timescales.  So I have no idea really. 

I had been to that link but actually a reminder to go back now I am further through the process was really useful.  It linked me forwards to two other websites peoplehub which seems really new so still content being uploaded but some useful guides and Beacon who I am still exploring.

It just feels a bit lonely, I would like to find a community of people to chat with about NHS CHC/PHB stuff as its quite daunting.  But on the plus side I am optimisitic it may meet my needs better than the Social care did. 

Thank you

L_Volunteer

Hello @Aardvark. Thank you for your response too. You are welcome for our responses. It is the very least you deserve.

How frustrating not knowing when it will happen or how long you will have to wait! Though, as you said, this doesn't feel unusual within the NHS waiting times, sadly.

I am glad the reminder to go back now you are further through the process was really useful. That sounds really positive. How great that the link also highlighted other resources you might find helpful.

It sounds tough that it feels a bit lonely though. We are all here for you, even if that is just a listening ear. Good luck.

Please feel free to let us know how you get on and if there's anything else we can do to support you further 

Aardvark

I am finding everywhere i look the CHC support forums are all about paying for end of life or substantial needs in nursing care with people talking (often not very nicely) about grandparents.

The whole thing scares me senseless.. i am struggling with mental wellbeing now due to this hanging over me and finding info. 

 Its that torturous part of the system where 'yep we will help you but we wont tell you if the help is actually what you want or need or when it will happen or how!'

I am so fed up of this.. i just want a meaningful, purposeful life with some joy rather than being wheeled out for an airing for a few hours a week... 

L_Volunteer

I can hear how these resources are scaring you @Aardvark. This sounds really tough. 

When you say you are struggling with mental wellbeing now, would you like to tell us more about what this looks like for you at the moment?

We are here for you and are so proud of you that even though you are scared you have the courage to talk to us about how you are feeling and what you are experiencing. You are not alone. 

I have to admit, we are guided by you. You know yourself best. However, we are holding out a hand, ear and shoulder to lean on. 

I can hear how you want a meaningful, purposeful life with some joy. What would this look like for you in an ideal world? 

Aardvark

Hello L

Thank you for the caring reply.  

My mental wellbeing.. its messy but all in hand I have ptsd (medical triggers ) but all the right people know whats going on GP its just hard to keep going when each day is the same and there is so much  could do if my physical disability had the support .  I guess thats why I am going to CHC but its a blooming long wait for them to actually set it up due to covid, staffing and well all the policies i guess

I am involved with quite a lot of volunteering groups on line organising things but cant go along in person.  I want to live the life i had before illness, the life healthy folk have with choice and freedom.  Not just being wheeled out once or twice a week for a few hours.  I want to cook my own food but that takes longer, do hobbies, contribute to my town etc.. 

L_Volunteer

Hello @Aardvark. You are welcome. Care is the very least you deserve. I can hear what a tough time you are experiencing at the moment, especially with not feeling able to do the things you enjoy and used to do.

It sounds really positive that whilst you are experiencing 'messy' mental wellbeing, all the right people know what's going on and you feel it is all in hand. I can hear that it is just hard to keep going though for you at the moment. What is helping you at the moment to keep going when each day is the same?

I can definitely understand how you could do more and thus have less of an impact on your mental wellbeing if you had support with your physical disability. What would ideal support look like for you at the moment in terms of physical disability? I hope you get to see and speak to CHC soon. Though, I can hear the many things which have contributed to this being a longer wait than preferable. 

It sounds like whilst you can't go along in person, you are involved with quite a lot of volunteering groups online organising things. How are you finding these volunteering groups at the moment? I can hear how doing the things you used to do, with choice and freedom, would mean a lot to you and go a long way in helping you. What do you think might help you in achieving this?

We are here for you if you would like to talk this through further with us  

forgoodnesssake

There is  quite a lot of useful info here for those who have a Personal Health Budget (like DPs but with NHS Continuing Healthcare funding) https://www.peoplehub.org.uk/

And i know what you mean about much of the online info being for older people in care homes: as far as I understand it CHC fun ding was not initially intended to cover younger disabled people..but increasingly it is...and it can be a real positive, not least because it is not means tested in the way that Local Authority support is (the NHS cannot (yet!) charge patients)

I manage my 24 year old son's CHC PHB package and whilst it's not always straighforward, and  information and support from the NHS admin side can be more than a little bit lacking (!) it still has great benefits in terms of choice and control.

L_Volunteer

Thanks for sharing this resource and your understanding and experience with us @forgoodnesssake. I am sure your response will be useful to many of our community members.

I thought your response was really insightful! If you need anything though, please remember we are all here for you too 

Aardvark

Hello 'forggdnesssake' and L

Sorry for delay.. its been bumpy health wise here.  Sadly health admin, appointments and so on have been dominating much of life here and without more PA support I cant do much of anything to dilute it down.  Gosh I am whiny, sorry about that.

Peoplehub looks really usefull.. off to explore.. thank you.

Forgoodnesssak - its good to hear of another CHC user that is working age but needs the help.  I feel very much an imposter and still not sure why I have been accepted.. yes it will be good not to pay care contributions and deal with the huge amount of annual paperwork for financial assesment under council scheme... but I am looking for the catch .  

Still no forwards progress here.. everyone agrees i need more support hours but adult care wont increase my budget as its CHC resposibility and CHC havent got to me yet so i am trapped in 'no mans land'.  

forgoodnesssake

From what I know, if you have been assessed to need more hours than you currently get, then until CHC kicks in the local authority are duty bound to ensure that your needs are met, therefore they should be upping your package and then reclaiming it from health once your CHC provision is agreed.  You shoudl have had a letter specifying the date from which you are eligible to CHC funding and I woudl use that as your evidence to both.  However I really appreciate that this is yet more stress and hassle

Aardvark

This is what I have understood too.. the problem is getting adult care to up my hours until then.  CHC have given a date they will backdate funding too and i assume reimburse me for my contributions.. so it shouldnt matter to adult care about agreeing what the social worker and OT planned. 

As you say stress and hassle.. its never ending.. all of it PIP, ESA and care are fights and full time of keeping up with.  Then juggling all my health stuff.. having a quick cry as my one free day this week has just been taken for a hospital appointment.  Its such a slog just to keep on top of everything and todays highlght will be an online supermarket order.  

We spend so long just waiting for the various systems whilst constantly regurgitating all the health stuff and it wears me down in fact a huge chunk of the disabled community I meet online feel the same. 

But still I am trying to feel fortunate that CHC has been granted without me being involved much or asking for it.. the Social worker did a huge amount of work after we met and i knw for many its a battle to get it. 

Alex_Alumni

Hello and morning @Aardvark I'm sorry to read that the stress and hassle of everything is wearing you down.

As you've said, you're certainly not alone in this feeling, which can help, but right now things are a tough slog!

I hope that spending time on the community is helping, but if you feel there's anything else we can do to help support you, please do ask. 

How are you feeling about your hospital appointment?

Aardvark

Hello Alex

How do i feel about hospital appointment .. resentful, angry and fed up that its cancelled my day out and chance to be a person not a patient.  Then guilty as they've squeezed me in as urgent and are going to help.   Not too nervous as its local hospital not big one. 

CHC juts dont seem to give any info or updates.. so it leaves me feeling powerless and completely at their control.  I've looked for online communities/ forums but its hard to find any complete opposits of the social care direct payment system with loads of info, groups and support.

Just keep going I guess... but grumpily not gracefully ;-) 

Alex_Alumni

We're here to support you @Aardvark and I can totally understand those feelings about your appointment.

What are you hoping the outcome of the appointment will be?

Aardvark

hospital is just a routine fixable thing.. a minor health blip in the landscape of all the other lables and diagnosis.. i think it will be a simple fix... probably wouldnt register on the 'things to worry about' list if it wasnt for it being in the middle of a day out i have PAs booked for, budgetted health and money for to go to countryside. 

I just think CHC could be more transparent... radio silence since being told i can have the mythical funding but not being told what its for and how much.. so life is still on hold waiting. 

Aardvark

Hurrah some progress.

Social services have upped my support with agreement of CHC who will refund them when all hoops jumped.  So at least i have more PA hours whilst this is worked out only taken 9 months since the urgent referral.   Hurrah for progress.

Hospital appointment.. went fine, all as expected

Aardvark

Thank you.

Now the fun starts with recruiting and finding a PA but hurrah one hurdle jumped

Tori_Scope

That sounds positive @Aardvark How have you been getting on with finding a PA?

Aardvark

sadly recruiting is very very slow... no bites yet .. well not from close enough i think comin from nigeria for a two hour shift is a bit too far even if the applicants dont ;-)

but its like that nationally .. the hourly rate the council give us just isnt enough.. its not changed in 10+ years.. cleaners, dog walkers , even babysitters in this area charge more... sigh 

still keep trying