long term condition funding

[wheelrace]

my husband has been ill for four years he fell over 100 times before he was diagnosed with his illness we have spent lots of money on adaptations someone mentioned something about this funding but I'm struggling to find any information can anyone who has got this let meknow

[Flutterbyes]

Hello mum in law 😘 just been reading on here! Noticed there is a posting by Kevin on Chc funding which is not social funding but NHS . I lost it again to refer back to but it was very interesting. I won’t ring as it’s late! If I find the link I will forward. Love to you both xx

[Kevin_1 in reply to Flutterbyes]

Hi flutterbyes

I'm so sorry you and your family are having to deal with this damned illness.

Here is my last post on CHC

healthunlocked.com/psp/post....

I write a lot about CHC funding, so I don't know which post you might be looking for.

However I would say check this one out to get a feel, but, please, come back to the forum before the assessment. There are things that need to be done to prepare for it which will give Geof a much better chance of being successful.

There are many voices here who can give superb advice on this.

Wishing you all the best with this.

Kevin

[Kevin_1]

Hi wheelrace

Ask your GP for a referral for Continuing Health Care.

This will hopefully give you access to free home care, or a paid for nursing home and whatever other needs Geof has.

It is a bit of a fight, sometimes, to get it.

So when the referral is in come back and I and others, will tell you how to handle it.

Also, are you aware that Social Services will send an Occupational Therapist in to asses your equipment needs and lend you whatever is needed? Including stair lifts and hospital beds. It's os worthwhile getting them in as they hare seriously good at working out stuff from feeding cups, grab handles and everything. Just telephone Soc. Serv.

Good luck and when you have the referral in do come back about CHC... being aware of the process makes all the difference to getting it and not.

Best to you

Kevin

[Flutterbyes in reply to Kevin_1]

Hi Kevin thank you for replying to my mum in law 😘. Everything is a battle and can be exhausting and very frustrating to say the least! I feel so sad that people who have worked all their lives, paid all their taxes etc own their own house and have some savings get very little help if any at all! Information is not easily obtainable and if you are not in the know it’s impossible. Any help is a relief . Thank you from the bottom of my heart.

Michelle xx

[Kevin_1 in reply to Flutterbyes]

No worries Michelle

So many of us have to struggle with the emotional side of PSP. Then add the full on care and then how to keep good things happening with the one we love. Then there is this damned fight for resources as well.

It's hard on one - As I'm sure you know.

It's a pleasure to try to help folk struggling the same as we.

Warmly

Kevin

[wheelrace in reply to Kevin_1]

thanks for your reply its very helpful I will ask the doctor social services said our income is higher than the government deem we need to live on we have used almost all our savings up but Geoff needs a special chair which will cost around 2000 pounds but social service said it needs a two person lift and we would need a carer here from 7 am to 8pm which is not necessary but I will be alone at night so what thenwhat its four years now and I keep coming up against brick walls so I am going to ask our local hospice for advice sorry we keep having diariah breaks sometimes I could just sit and cry sorry for moaning tommorows another day

[Kevin_1 in reply to wheelrace]

Great

Think of your needs in three different types.

Remember that borrowing equipment like a chair from social services is free (same with wheel chairs and other equipment. I'm surprised the OT is saying getting a chair which presumably will help Geof stand requires two people and doing without is OK.

There are other devices such as rotor stands which may help him stand and transfer. They will lend you these, free, too.

youtube.com/watch?v=F5PAFiC...(Not working as expected?)

The means tested social care is separate from the free equipment loans from social services.

I tempted to ask whether your OT is actually trained... they sometimes send out OT assistants. As Kate says below, can you get your local hospice to advocate for you? They often have their own OTs and they might be able to do some OT to OT talking.

Best to you.

Kevin

[wheelrace in reply to Kevin_1]

kevin you are a star I know you were chatting with my daughter in law shes a star as well I am talking to the oc tomorrow I will ask about a rotor stand or something similar the chair and lift she offered came with carer for nine hours a day which we don't need at the moment she would be sat on the sofa for most of the day it came with costs I am a very capable person and I think because I wont accept anything which is irrelevantto our needs they think I'm awkward what I wanted was a chair with wings so if he sleeps his head is supported and some thing to assist with moving him to his wheelchair we are alone at night and manage fine I bought him a rise recline chair but its not suitable now they don't lend chairs in this area apparently so I knew I would have to pay I just needed guidance on the right one Geoff is feeling like a burden which he isn't and I will fight all the way to look after him at home its what he wants can they go against his wishes I'm going to contact our local hospice for some advice thanks a million doreen

[Kevin_1 in reply to wheelrace]

I sounds like you really are on the nball and doing a great job with the caring. Bravo!

Good luck

Best

Kevin

[Marie_14 in reply to wheelrace]

I managed to get the loan of a chair such as the one you describe from the Hospice. Also the OT from there was very helpful. They helped with Power of Autorney for Health and Finance too. Also a DNR. Plus he was able to go to the day centre once a week. They really are good.

Marie x

[Katiebow]

Kevin offers wonderful advice on CHC funding and has helped many people to gather the correct information to assist in the fight for the funding. Is your husband attending the local hospice day care centre, I found that they supported us tremendously to get the funding as did the SALT and Parkinson's Nurse. Many on the site have said that you have to provide the information on the worst scenario e.g. emphasise that your presence helps to prevent many falls, prevents choking etc ect. It's gruelling but so worth the time and effort. The Parkinson's Nurse sat with me during the assessment which was a great support as it is quite long and emotional. Best of luck and be guided by professionals to help you through.

Love Kate xxx