New to this forum

[Silverfoxdiver]

Just stumbled on this forum and joined today - so a newby. Need some help maybe.

Brief history:
Mother diagnosed 11 years ago. Age now 85.
Father was carer at home until his death two and a half years ago and mother was found a residential home immediately - self funding.
She has deteriorated from walking unaided to immobile in this time.
Behaviour is pleasant and compliant.
Communication is one word now and then.
Cognition impairment is severe.
Sleeps all the time
Vasovagal episodes occasionally and unpredicable.

Have been progressing with Continuing Healthcare application but not approved. Appealed to get a couple of domains changed - but no.

Is there any help out there? Where now?

Mike

 

[Saffie]

Hello and welcome to TP. We're an odd bunch here but the one thing we have in common is that we all support each other through thik and thin - or so I've found.

Behaviour is pleasant and compliant.

I think this might be a factor. When we applied for CHC funding for my husband who has multiple physical problems as well as dementia, a nurse told me that as he wasn't at all violent, it was unlikely we would get the funding. This tuned out to be true - it never even got as far as the panel, many of the criteria being downgraded from the nurse's scoring by the PCT. He is immobile, having had an amputation in the last 14 months, severely diabetic, has kidney disease and has fragile skin and PVD etc. as well as having poor communication and language. i was also told that one has to be approaching a terminal stage to obtain it.

However, it seems it does depend on the PCT involved and you may be more fortunate in your part of the country. There is advice should you wish to appeal, on the Alzheimer's website. I can't recall the exact address but I'm sure somebody will be along shortly to give it. I wish you well with this. good luck.

 

[Silverfoxdiver]

Thanks for the response - interesting. I'll dig around the AD website as suggested too.
Best regards

 

[Saffie]

I hope it helps. i must clarify that when i said we were an odd bunch here, I was very much talking about myself! Everybody is absolutely wonderful and I wouldn't have survived the last 8 months with any semblance of sanity without the TPers.They are all great.

 

[boonken]

Dont give up keep trying! My Dad was given it in June ended up in a care home that has just won a national award. Unfortunately he was re assessed after 12 weeks and because the care home were meeting his needs they withdrew it!

He ended up in another home because we could not afford the extra £500 per week that would be needed. He is now back to square one in hospital with Aspirate Pneumonia.

He went downhill from day 1 now he is fighting for his life.

I have complained to CQC and the care home he was originally in will have him back, i just need to secure the funding which i am confident i can.

Keep fighting and dont ever take anything that someone in authority is telling you is the way it is, its more often not the case!

This country is a disgrace!!

Good luck!

 

[BeckyJan]

This is a link to the NHS Volunteer Support Group who specialise in helping people to appeal against a decision not to give CHC. They were extremely helpful to me.

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=398

In the meantime if you can go through the National Framework (heavy work though), look at the Checklist and the Decision Making Tool - this will help when you get to the discussion stage with the Support person. I can give links to these if you wish.

Good luck

 

[Silverfoxdiver]

Thanks to all of you for the kind messages and prospect of hope.
Becky - those links will be appreciated, thanks.
Mike

 

[BeckyJan]

Hello again.
Here are the links. Believe me they are hard work and you do not need every detail. I believe the Support Group can help you identify the strengths of your particular case. You have time. Any agreement to CHC should be backdated from the time of your application.

National Framework:
http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_103162

Checklist:
http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103328.pdf

Decision Support Tool
http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103329.pdf

Good luck - I am sure others will want to know how you get along. Any future Threads you start on this topic may be better in the Legal and Financial Issues section of the Forum:
http://forum.alzheimers.org.uk/forumdisplay.php?60-Legal-and-Financial-Issues

Best wishes

 

[Nannybus]

Good luck to you. I had been trying for Continuing Care for 4 years.

Mother was bedbound, doubly incontinent, no communication, had to be fed and turned in all of that time.

After a lot of writing, I actually got them to take notice in February of this year. Mother had bad breathing problems, extremely poor skin viability. The DN did the assessment and I wondered who on earth the assessment was about, as the scores did not seem relevent to mum. The DN did not even deign to submit the assessment to the panel, as she said it would be futile.

After a dreadful year of suffering, mum died in November. The week previously, the District Nurse said she would fast track my application, but have heard nothing.

Somebody said that I could back date my claim, but the Death Certificate only has one word of Reason for Death on it, and that is 'Alzheimers', so there were no other circumstances that would warrant nursing care, although the District Nurses had to be called in many times to attend to her.

I do hope you can get somewhere with your application.