Unfortunate publicity for CHC Individual Budgets

[stanleypj]

We need anyone who might be eligible for NHS Continuing Health Care funding to know that it exists so I suppose no publicity is bad publicity. But the story the BBC is running today about money from individual budgets being spent on what are seen as unnecessary luxuries (e.g. someone having a summer house because they needed their own space) is a bit worrying. No doubt as in most if not all such schemes there are occasional abuses but the answer is better monitoring systems. Probably austerity-related staffing cuts have made this difficult.

 

[Beate]

I was mad as hell when I read it! It's on the front page of the Metro and I am sure the Daily Mail is having a field day! People criticising individual spending usually haven't a clue what having an illness or caring for someone with an illness is like. If a holiday is beneficial for someone's health or wellbeing and it's within the rules, why not spend a personal budget on that?

 

[sistermillicent]

they take things out of context, though I must say I felt appalled at what they were reporting initially. Then I remembered the recent publicity about people with coeliac disease getting junk food on prescription for free.......I can assure you that having a coeliac daughter I know that this is a gross distortion of the facts. So I am fairly sure that the stories today are the same.

 

[Kevinl]

I am sure the Daily Mail is having a field day!QUOTE]

They are, apparently "It estimates that English NHS clinical commissioning groups will have spent £123million by the end of this financial year for 4,800 patients on the personal health budgets scheme." That's over £25k per patient can that be right?
K
http://www.dailymail.co.uk/news/art...ortune-holidays-pedalo-ride-summer-house.html

 

[Spamar]

The mail calls it 'personal health budgets ' I assumed it was equivalent to iCare or enhanced personal budgets that we used to have, though it seems they spent an awful lot more money than iCare or EPB's ever did.

Sorry, crossed with Kevini.

 

[nitram]

NHS description of Personal Health Budgets, includes some examples.
http://www.nhs.uk/choiceintheNHS/Yo...gets/Pages/about-personal-health-budgets.aspx

The £25k/person could include the cost of all the professionals assessing the needs/deciding the finance/actually paying the budgeted amount.

 

[Sue J]

NHS description of Personal Health Budgets, includes some examples.
http://www.nhs.uk/choiceintheNHS/Yo...gets/Pages/about-personal-health-budgets.aspx

The £25k/person could include the cost of all the professionals assessing the needs/deciding the finance/actually paying the budgeted amount.

When I was first 'assessed' and asking for help at home I was told I could have x 6 single hours care then end of, no more. When the support worker eventually came she told me I did already have a PB of nearly £2000, I saw not a penny of it, no one had told me I had it, nor helped me to access it, I had to continually struggle on my own to get any help at all with a seriously deteriorating situation. The six hours ended and it took me over two years to achieve getting any further help at all. Most of the so called HCP in my case were anything but professional. As a former HCP I would have expected to have been sacked had I behaved in the same way. I still have seen no diagnosis, that they have discussed with me nor a PB.

Still 6 years down the line they haven't understood why I reacted to having a PB financial assessor come, not because I wanted to hide anything but because to get the asked for paperwork together is something I can't do alone. What bit of cognition difficulty do they not understand? They don't know how to read notes either or listen. I was trained in writing care plans, they wrote one for me but no care materialised, I had to do it myself.

I know this is my experience only and that not all HCP are like this but my experience has been they are meant to help you to feel safer.

 

[Wirralson]

This isn't about CHC - it's about Personal Health Budgets. Offical link here: http://www.nhs.uk/choiceintheNHS/Yo...gets/Pages/about-personal-health-budgets.aspx

W

Edited to add: Nitram beat me to it.

 

[stanleypj]

they have been piloted in a number of places across England and since October 2014, adults receiving NHS Continuing Healthcare and children in receipt of continuing care have had a right to have a personal health budget. Quote from the page you linked to.

NHS Continuing Health Care = CHC

 

[stanleypj]

Sue was recently given NHS Continuing Health Care and we were told that she would have a Personal Health Budget, which I will be responsible for. The costed budget was sent a few days later.

 

[Sue J]

This isn't about CHC - it's about Personal Health Budgets. Offical link here: http://www.nhs.uk/choiceintheNHS/Yo...gets/Pages/about-personal-health-budgets.aspx

W

Edited to add: Nitram beat me to it.

Thank you for that clarification Wirralson, so you can have a Personal Budget and a Personal Healthcare Budget, I had understood PB was for healthcare but evidently this is different.

 

[stanleypj]

The first group to be able to have a personal health budget are adults getting NHS Continuing Healthcare, which is NHS-funded long-term health and personal care provided outside hospital. Children who are eligible for continuing care also have a right to have a personal health budget.

What is the difference between a personal health budget, a personal budget, an individual budget and a direct payment?
A personal health budget is for your NHS healthcare and support needs.
A personal budget is for your social care and support needs.
An individual budget includes your social care and support needs plus other funding, such as independent living.
A direct payment is one way of managing these budgets, where you get the cash to buy the agreed care and support you need.

The titles of the two schemes are confusing Sue. Wirralson's link (extracts above) does clarify things but not in the way he suggests. By the way, I am now about to draft, with an adviser, a 'Personal Health Budget: Support Plan' which has been sent by the NHS Commissioning Group.

 

[Sue J]

The titles of the two schemes are confusing Sue. Wirralson's link (extracts above) does clarify things but not in the way he suggests. By the way, I am now about to draft, with an adviser, a 'Personal Health Budget: Support Plan' which has been sent by the NHS Commissioning Group.

They are confusing and when you come from a staring point of even more so.

Interesting re. support plan hope you get what you need for yours and Sue's needs.

 

[Padraig]

Health care budget, what's that? I found it less stressful to take care of my wife and myself in my own way than relying on others. I bought a wheelchair, commode and other equipment as my wife required them. When the end came I was happy to pass them on free those in need of them.
Since I came home after major surgery for stomach cancer, I've been left without any support, nothing new there. It's just they way the system works, less stressful not to bother.

 

[Sue J]

Health care budget, what's that? I found it less stressful to take care of my wife and myself in my own way than relying on others. I bought a wheelchair, commode and other equipment as my wife required them. When the end came I was happy to pass them on free those in need of them.
Since I came home after major surgery for stomach cancer, I've been left without any support, nothing new there. It's just they way the system works, less stressful not to bother.

I agree in many ways Padraig. I still only want/need some diagnosis as my ability to function diminishes daily and have no support elsewhere. I have always been independent and continue to be as much as possible but this condition means that I will need care or end up locked up in a psychiatric unit because I've progressed too far for anyone to understand anything about my condition. I told them I don't want a budget, but I do need some help.

The CPN that was supposed to be supporting me couldn't understand my needs at all because she was too busy trying to understand the computer programme in which she had to enter all my details. I wasn't asking for a budget but for my needs to be listened to and whatever help I could then get I would be thankful for.

It is bureaucracy gone mad if you ask me. It is the way the

system works

, or doesn't because there aren't enough people to administer it effectively and too many that need it.

 

[Wirralson]

Deleted post

 

[Padraig]

Sue, my heart aches at the lack of understanding I've witnessed and witness when it comes to the needs of those afflicted with the illness. One of the hardest decision I had to make for my wife was to close her bank account and take charge of a large amount of money I found hidden (for safe keeping) in one of her many handbags. When it came to ending her driving, I offered to be her personal driver. The thought of losing one's independence is frighting. If I was suffering with Dementia many of the posts on here would scare the hell out of me. It's not surprising therefore, that so many live in denial at the prospects of 'being put away' as my wife once said.

Constantly I attempted to imagine what it must of felt like for my wife. It was not just her physical health I attended to, but most important was her mental state. To keep reassuring her how special she was, not only by meeting all her needs and the promise I'd always be there for her. To know that you are wanted and loved for yourself no matter what, is the best medicine for one that can no longer speak or move. We can learn a lot from blind, deaf and dumb people and dogs for that matter, when it comes to communication.

 

[AlsoConfused]

Sue, I'm so sorry you face such a hard struggle.

Is there a Mental Health advocate service near you please? It seems to me that if you can offload some of your own burden onto an individual whom you can trust to represent you properly that would be an enormous step forward.