10 replies to this topic

[Apparelyzed]

Spinal Injuries Association Continuing Care Information Pack

Are you eligable for continuing care with the NHS?

It is the Spinal Injuries Association's view that those of you who are tetraplegic may meet the eligibility criteria for NHS Funded Continuing Care, a free NHS service. The SIA has therefore produced an information pack, to help with the successful application of continuing care under the NHS.

The purpose of these notes is to help you maximise your chances of making a successful application for funding of your care package through Continuing Healthcare. It should be borne in mind that throughout the assessment process it is essential to ensure that whoever is carrying out the assessment clearly understands both your existing care needs and the full extent of the inherent risks attached to your condition.

For instance, even if you have never had a pressure sore or any skin problems, there is always an ever present risk that you could develop skin problems at any time. For that reason it is essential that your skin, (pressure areas) are checked regularly, and as a minimum at least once every day. You also need to ensure that you get regular pressure relief though out the day.

It may seem strange that for an organisation that promotes independence and self reliance, we are
advocating in this instance you stress your dependence on others to highlight your vulnerability. This is not a reversal of ethos, rather it is to ensure that the inherent ever present risks that every tetraplegic lives with every day of their lives are made abundantly clear to whoever is carrying out the assessment and those who will make the final decision.

It is important to remember that it is highly unlikely that any assessor understands Spinal Cord Injury (SCI) and the real health risks each of us runs every day.

SIA believes all SCI tetraplegics of C5/6 and above should satisfy this first stage and be entitled for a full consideration. It should be remembered that qualifying for a full consideration is no guarantee of qualification for Continuing Healthcare. This first stage is intended merely as a filtering process.

However, the Checklist used is based on the Decision Support Tool used in the second stage of the assessment process (copy included with the pack), and uses the same eleven domains in determining qualification.

You can download the Spinal Injuries Association Continuing Care Information Pack below, or the department of health website for more information.

Attached Files

•  continuing_healthcare_booklet.pdf   4.65MB   1256 downloads

[Irenec]

How do you go on when you have been awarded Continuing Care, but the PCT cannot provide the health care (bowel care). They can only provide social care(help with getting up) What good is it if they cannot back me up to care for my husband.

We have tried live in carers, but it didnt work.

If i am ill and there isnt anyone to do his bowel care. He will die from AD

Edited by Apparelyzed, 07 December 2009 - 03:05 PM.

[Apparelyzed]

Hi Irene,

Try calling the Spinal Injuries Association, as they have a dedicated freephone advice line 0800 980 0501, so should be able to give you the advice you need.

Regards

Simon

[Scribbler]

I may ruffle some feathers here but I'm 100% against the Continuing Care Scheme.

This is funded from the Health Budget, which means there is less for other peoples health needs; cancer patients, children's cancer etc.
As it is classed as Health Care, which is free, anyone receiving Continuing Care doesn't have to contribute a penny, even if they are wealthy.

For those who use the Direct Payment scheme they have to contribute something towards it.

For many years now there's been a dispute about what is Social Care and what is Health Care and who should pay. The Authorities never get together to sort it out as they don't want the financial burden.

The SIA and the Care Agency "Active Assistance" promote the Continuing Care scheme, as Active Assistance are the Care Agency who benefit from it. They charge large fees to supply Carers but pay Carers the minimum.

I was a founder member of the SIA when it first started. Their aims then were genuine and not influenced by big companies like they are now.

I didn't think it ethical that the SIA allow Active Assistance to promote this scheme, which they benefit from; its clearly a conflict of interest.

Due to the huge influence Active Assistance have over the SIA, I wrote to the SIA to inform them of my concerns. I received a reply informing me Active Assistance sponsor the SIA, which proved my point about ethics and a conflict of interest. I immediately resigned my membership of the SIA, which I don't regret one bit.

This is my personal views on the topic.

Edited by Scribbler, 05 February 2011 - 01:07 PM.

[shady]

Hi Scribbler
Thanks to you and others who are posting such useful info regarding Direct payments, continuing care etc

My confusion is this

This is funded from the Health Budget, which means there is less for other peoples health needs; cancer patients, children's cancer etc.
As it is classed as Health Care, which is free, anyone receiving Continuing Care doesn't have to contribute a penny, even if they are wealthy.
For those who use the Direct Payment scheme they have to contribute something towards it.

I use DP but my package has recently been assessed as 80% Health care and 20% social care.
Are you saying I shouldnt be contributing to the health care portion??

I have a few more question, if you guys dont mind but will make seperate posts as my fingers freeze up if I type alot

[Scribbler]

Hi Scribbler
Thanks to you and others who are posting such useful info regarding Direct payments, continuing care etc

My confusion is this

This is funded from the Health Budget, which means there is less for other peoples health needs; cancer patients, children's cancer etc.
As it is classed as Health Care, which is free, anyone receiving Continuing Care doesn't have to contribute a penny, even if they are wealthy.
For those who use the Direct Payment scheme they have to contribute something towards it.

I use DP but my package has recently been assessed as 80% Health care and 20% social care.
Are you saying I shouldnt be contributing to the health care portion??

I have a few more question, if you guys dont mind but will make seperate posts as my fingers freeze up if I type alot

Shady. As the Local Authorities & Primary Care Trusts can never agree on who should pay for what, then I'm afraid I cant answer your question.
Its obvious that your Carer taking you food shopping would be classed as Social Care whereas Bowel Routine is classed as Health Care.

There are many cases where a District Nurse would do Bowel Care, but in my personal experience this has not happened.
When admitted to a General Hospital where you'd think you'd receive full Health Care, I was told their staff weren't trained in SCI care, so my Carer had to stay with me to provide my care needs, even bowel care.

With so many Budget Cuts in the pipeline things are only going to get worse.

My main objection to the Continuing Care Scheme is this.

If a care package for a Client is assessed at £1500 to £2000 per week this money, which comes from Health Service Funding, is paid to a Care Agency to provide that care for the Client who doesn't contribute. If ones reads the posts from these Clients you will see the Care Agencies often provide low quality care. They pay their Carers a very low wage, so its obvious the Care Agency is making a considerable profit from this scheme, which I personally feel is a waste of resources.

Using the Direct Payment method, good quality care can be given at a lower cost, plus the Client manages it themselves. Using this method my Carers are paid the correct rates of pay, which is considerably higher than Care Agencies pay their Carers for doing the same job.

However, I do believe the Health Service should contribute some funding towards any scheme, but this is a political hot potatoe which cant be solved by the likes of me. I'm sorry I cant really answer your question Shady but I hope you get good quality care.

Scribb's

[dilly]

How do you go on when you have been awarded Continuing Care, but the PCT cannot provide the health care (bowel care). They can only provide social care(help with getting up) What good is it if they cannot back me up to care for my husband.

We have tried live in carers, but it didnt work.

If i am ill and there isnt anyone to do his bowel care. He will die from AD

morning,

Did you ever get hubby's care sorted?
We are having just the same problem. At the moment got live-in carers, what a nightmare that is!!

any info gratefully received

thanks
dilly

[Irenec]

How do you go on when you have been awarded Continuing Care, but the PCT cannot provide the health care (bowel care). They can only provide social care(help with getting up) What good is it if they cannot back me up to care for my husband.

We have tried live in carers, but it didnt work.

If i am ill and there isnt anyone to do his bowel care. He will die from AD

morning,

Did you ever get hubby's care sorted?
We are having just the same problem. At the moment got live-in carers, what a nightmare that is!!

any info gratefully received

thanks
dilly

Yes we did get his care sorted. We use a local agency called Allied Health care. They are a national company. It took quite a while to sort it out, but we got there in the end.With my husbands persistance we managed to have some training including bowel care, from the spinal unit.
Like you we had live-ins for about a year. It was a total nightmare I would rather have no care than live-ins.

The bowel routine is done every other day, on this day they are paid to come for 4 hours, next day 1 1/2 hours, and 1hour in the evening.We could have them a lot more if we wished to.If i go out for the day they come in extra.We are retired but if i worked they obviously would come in a lot more.
We have a regular carer and two others are trained in case ones on leave.
This all works out more cost affective for the PCT.

Hope this helps pm me if you want to know more.

Irene

Edited by Irenec, 30 August 2011 - 05:16 AM.

[Tinbasher]

I use DP but my package has recently been assessed as 80% Health care and 20% social care.
Are you saying I shouldnt be contributing to the health care portion??

Your charge should be based on the Social care portion ONLY.


Health care is free in the UK and it is illegal to charge you for it.
You should also make sure that all "Disability Related Expenses" are taken into account BEFORE your financial assessment.

Ask for a review of your financial assessment and a proper explanation of your charges.

Your Direct Payment Support Service or local Centre for Independent Living should be able to help you with this.



Tin

[dilly]

How do you go on when you have been awarded Continuing Care, but the PCT cannot provide the health care (bowel care). They can only provide social care(help with getting up) What good is it if they cannot back me up to care for my husband.

We have tried live in carers, but it didnt work.

If i am ill and there isnt anyone to do his bowel care. He will die from AD

morning,

Did you ever get hubby's care sorted?
We are having just the same problem. At the moment got live-in carers, what a nightmare that is!!

any info gratefully received

thanks
dilly

Yes we did get his care sorted. We use a local agency called Allied Health care. They are a national company. It took quite a while to sort it out, but we got there in the end.With my husbands persistance we managed to have some training including bowel care, from the spinal unit.
Like you we had live-ins for about a year. It was a total nightmare I would rather have no care than live-ins.

The bowel routine is done every other day, on this day they are paid to come for 4 hours, next day 1 1/2 hours, and 1hour in the evening.We could have them a lot more if we wished to.If i go out for the day they come in extra.We are retired but if i worked they obviously would come in a lot more.
We have a regular carer and two others are trained in case ones on leave.
This all works out more cost affective for the PCT.

Hope this helps pm me if you want to know more.

Irene

thanks for all this Irene. driving us both mad this live in. the PA's sent from Active all seem peasants - not to mince words.!

Alan did phone Allied Health in Exeter our local branch - but they don't have any one in the area, which seems a bit negative. we've approached agencies: Origin, Spirit, Pulse. but it would appear that they can't even start to recruit staff until they get a contract from the PCT. this seems ludicrous, why not say the first ones to find PAs gets the contract. Our PCT is as much use as a chocolate teapot!

at the moment Alan is researching getting Personal Health Budgets. Give him the money and he'll organise his own staff. He did this quite succesfully for 12 years via SS. but then they introduced something call 'The Fairer Charging Policy' whereby they were going to take ALL of alan's benefits and leave us just £100 a week to live on - WHAT!

We both feel we wish we had'nt fought all those years for CHCF.
Anyway I will tell you of any progress. I see you are friends with Catmint - she has been very supportive. good to know we are not the only ones out there.

Take Care
Dilly.

[Tremulous Tetra]

I agree that under continuing care, you should be able to employ your own PA's directly. This would be cheaper, and is most definitely a better service. However, there is a way round that problem, which isn't necessarily cheaper, but it does allow a better service.

You can employ people directly through an agency called Your Life Your Way. You select people you want to employ, or they will advertise for you in the local job centre. When you have recruited your people, they work only for you.

I also have the district nurses coming in. The important thing about this is to educate yourself properly as to the NHS guidelines. The district nurses don't have a choice. They are legally bound to cover any health issues, invasive procedures. Not only that, they will tell you that they only apply the enema, and leave. THIS IS WRONG! Anything invasive they are legally bound to deal with. IE PR's. If you need them regularly, THEY HAVE TO DO THEM. What's more, nobody can predict when they will be constipated, prone to dysreflexia, and needing a PR. Lastly, if they start a job, they have to finish. Cleaning up the mess they have created is part of their job.

I have just moved house. I received the above in my previous area, and was told by the district nurses when I moved to my new area I couldn't have it. I politely said, no disrespect but this is not right. Who is your manager?

The district nurses now come in Monday Wednesday Friday 8:30 AM prompt for 1 hour or until the procedure is finished. [Working with other agencies they cannot come in when and how and if it suits them. They have to timetable in conjunction with other agencies. The secret is, you set the time with the other agencies. ;)]