Continuing Health Care - Preparing to fight PCT's decision

mike88

Thank you Monkeyspanner (what a name!) and Malid. I have spoken to various people today - Age Concern Cymru, GP, Social Services, the Nursing Home and my mother's GP. This all seemed a bit easy and I'm sure something is amiss but apparently the Social Services will arrange for my mother to be assessed next week. I can't be there as I live 150 miles away but I've asked for a copy of the assessment.

The GP said my mother was very unwell, vascular dimentia and heart problems etc and confirmed she is on tranquilisers to deal with her psychotic shouting episodes. He thought she had a reasonable case but the downside might be that her conditions (although serious) are manageable with GP and nursing intervention outside a hospital environment.

The people in Age Concern implied that, whatever the need, she will be turned down for continuous funding and advised me to get a solicitor when rejection comes.

I have a registered power of attorney (as opposed to the newer lasting power of attorney) and have been acting for my mother for at least 10 years. Social Services, the GP, the Pension Service and, previously the hospital have all dealt with me with no problem. But if things get sticky I presume an Enduring Power is still OK.

I am sure I shall need further advice from this board so for now thanks once again.

monkeyspanner

mike88 wrote: »

He thought she had a reasonable case but the downside might be that her conditions (although serious) are manageable with GP and nursing intervention outside a hospital environment.

The people in Age Concern implied that, whatever the need, she will be turned down for continuous funding and advised me to get a solicitor when rejection comes.

I have a registered power of attorney (as opposed to the newer lasting power of attorney) and have been acting for my mother for at least 10 years. Social Services, the GP, the Pension Service and, previously the hospital have all dealt with me with no problem. But if things get sticky I presume an Enduring Power is still OK.

I am sure I shall need further advice from this board so for now thanks once again.

Hi mike88
Your GP is misunderstanding CHC assessments. The english national framework is clear that a well managed need is still a need. So if the behavioural problems are controlled with drugs this need should still be taken into account. It is possible the assessors may try to assert there is no need and it does not need to be accounted for in the assessment. This should be refuted. I am not sure if this principle is specified in the welsh system

Age Concern are probably right the usual approach is to resist awarding CHC funding so that only the most persistent eventually receive funding. Hence the reason why most awards contain some retrospective element. It depends how much time you have to get involved but I would say you can manage at least the initial assessments and independant review panel stages without legal help. If you need a specialist solicitor I can point you towards one with a good history of success.

I think technically an Enduring power of attorney does not cover medical issues but from past experience I think it is unlikely this will be made an issue and my wife never experienced any problems dealing with matters for my MIL with an enduring POA. Have you registered the POA as registration is required if the person becomes mentally impaired?

Best of luck.

robgoingcrazy

monkeyspanner wrote: »

Hi Robgoingcrazy
I am sorry to hear of your mum's condition and the position you have been put in, the last thing you need at this time is a diversion of your efforts.

As you say the national framework does include provision for fast tracking in this situation and the relevant section is 45 on page 16 of the national framework. Follow this link if you have not already seen it http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076288?IdcService=GET_FILE&dID=143148&Rendition=Web

Your least time consuming approach at the moment will be to write to the CHC team in your local PCT (signed for post recommended) making it clear that you do not agree with the decision that your mum's needs are not primarily medical, and state you intend to make an appeal for retrospective funding. This decision is clearly nonsense in this situation. It is possible that only an initial checklist has been performed and not the full DST assessment, and the relevant PCT assessment staff may not have been involved. The initial checklist is often done by undertrained staff who do not understand the CHC national framework or the criteria. I would not bother too much about the detail at present as long as you lodge your complaint.

Other than that try to gather as much information as you can to back you up at a later appeal.

My thoughts are with you at this most difficult time, please let me know if there is any specific research I can help you with.

Thanks for the info. It was the full decision support tool that was used - the meeting was nearly 2 hours, have yet to hear the final decision on whether it will even be put forward to PCT panel or not so too early to lodge an appeal as yet. I have only got this vague "it is unlikely" message at the moment. It all seems very strange - I did notice the staff in the meeting seemed somewhat unfamiliar with the tool. At the end they said something like, so what is the score? Then looked through the guidance notes and said, oh, there isn't a scoring system as such... Hmmm. At the same time they were telling me that they are very experienced in these cases and know which cases are and are not likely to be successful with the PCT... I wonder what the score was the last time they did it, seems a bit bizarre to me!

To be honest if mum's prognosis is correct (the doctor kicking her out of the hospice said she could well die on day one in the nursing home - thanks, doc, why discharge her from your care then and send her to be looked after by the local authority?!) it's not really going to matter too much except as a point of principle.

I am collating as much evidence as I can, but with a business to run as well (which is going to ruin as I write) and wanting to spend time with mum as well, it's been putting an enormous strain on me:(

mike88

Monkeyspanner. Thanks. It's very good of you to devote so much of your time to helping people.

Yes the Enduring Power is registered with the Court of Protection. I have been given the name of a solicitor who happens to be local and apparently speaks at national conferences on this matter. But this is an option I would prefer to avoid for obvious reasons unless there is a no win no fee option.

The GP did say that he was unsure of the criteria applied by the assessment team but thought that they might rely on the fact that my mother's condition was manageable even though she is in terminal decline.

Onawingandaprayer

Further to your helpful thoughts yesterday, have sent you a private message.

What a mine of info you are!

malid

mike88 wrote: »

Monkeyspanner. Thanks. It's very good of you to devote so much of your time to helping people.

Yes the Enduring Power is registered with the Court of Protection. I have been given the name of a solicitor who happens to be local and apparently speaks at national conferences on this matter. But this is an option I would prefer to avoid for obvious reasons unless there is a no win no fee option.

The GP did say that he was unsure of the criteria applied by the assessment team but thought that they might rely on the fact that my mother's condition was manageable even though she is in terminal decline.

As Monkeyspanner said, it doesn't matter that your mother's condition is managed. It is only managed 'with GP and nursing intervention' even if it is 'outside a hospital environment'. When speaking to the GP and the multi disciplinary assessment team, show them that you are familiar with the assessment tool. I know it's time consuming to gather all this information but I was determined to be as knowledgeable as possible when dealing with my uncle's case. It will be time well spent when you show them that you're not a pushover and that you intend fighting for your mother's rights. I think your EPA will be OK (but it must be registered); although it may not be essential here, at least you have it if needs be. I found it useful (even though it had not gone through the system) to drop it in to conversations when people were saying ‘we have to deal with the patient or next of kin’ (and I wasn’t the next of kin) – I have LPA.

Robingoingcrazy, I know how difficult it must be for you too. This is the last thing people should have to do when they are under such emotional strain anyway. The problem in my opinion is that CHc is not advertised/promoted sufficiently then the 'authorities' get away with it. I consider myself quite knowledgeable on various matters but was not aware of this. I came up against brick walls when I tried to find things out but I was determined to battle on. This forum gave me the confidence to do it and I value every minute I spent (and I spent days) researching all this even though my uncle passed away on the morning of the assessment.

Fight not to have her kicked out until all this is sorted and you are happy that she is getting the nursing care she needs and is entitled to. There is no way I would have allowed my uncle to leave the hospital in his condition irrespective of any decision; he was dying and other than being in his own home with suitable nursing care, the hospital was the only place for him not any nursing home irrespective of how good they are. But do remember as far as CHc is concerned, if approved, this would apply for a nursing home but not for someone who is deemed suitable for a residential home (i.e. minus the nursing element).

mike88

Thanks Malid. The problem I'm experiencing after speaking to several people is that Wales does not sem to have a system. There does not seem to be a specific document as in England unless of course I've missed something.

When I receive the results of the assessment my next step will be to ask for a copy and then ask about the criteria they used to reach their decision.

margaretclare

.....manageable with GP and nursing intervention outside a hospital environment.

There's a lot of nursing that goes on outside hospitals but it's still nursing as opposed to care. Have a look at what any of the District Nurses do on a daily basis - sterile procedures like giving intravenous antibiotics, just one example.

This seems to be what the authorities can't get their heads around. They seem to be fixated with 'nursing only goes on inside hospitals'.

monkeyspanner

margaretclare wrote: »

There's a lot of nursing that goes on outside hospitals but it's still nursing as opposed to care. Have a look at what any of the District Nurses do on a daily basis - sterile procedures like giving intravenous antibiotics, just one example.

This seems to be what the authorities can't get their heads around. They seem to be fixated with 'nursing only goes on inside hospitals'.

That is very true and in addition care home workers often have to administer very complex medication regimes and are sometimes looked down on by the district nursing staff. In my MIL's case it was 9 different medications at 7 times during the day. Continuing healthcare funding used to stipulate that the care had to be administered by medically qualified staff. This was judged to be too proscriptive and now the care can be provided by suitably trained staff in any setting.

monkeyspanner

mike88 wrote: »

Thanks Malid. The problem I'm experiencing after speaking to several people is that Wales does not sem to have a system. There does not seem to be a specific document as in England unless of course I've missed something.

When I receive the results of the assessment my next step will be to ask for a copy and then ask about the criteria they used to reach their decision.

There are existing guidance documents in Wales
WHC (2004) 54/NAFWC 41/2004 and WHC (2006) 046/NAFWC 32/2006
A link to the 2004 document is here
http://www.wales.nhs.uk/sites3/Documents/259/WHC%202004%2D054.pdf
A link to the later document is here
http://www.wales.nhs.uk/sites3/Documents/281/Circular%20WHC%5F2006%5F046%20NAFWC%2032%2D2006.pdf

The new Welsh Assembly Government (WAG) draft framework is here
http://new.wales.gov.uk/consultation/dhss/continuingcare/draftframeworke.pdf?lang=en
This was put out for consultation in late 2007/early 2008 with responses due 30 May 2008 but I cannot find that anything has been done about implementing it yet (what a surprise!). If nothing has been done then the responsibility for setting up and implementing a CHC assessment and funding system is still delegated to the individual Local Health Boards (LHBs) in Wales. I have found numerous references from various LHBs. If you could let me know which is the relevant LHB I will search for more specific information.

These responses to the WAG CHC proposals might be of interest.
http://www.counselandcare.org.uk/assets/library/documents/NHS_Continuing_Healthcare_consultation_in_Wales_April_2008.pdf
http://www.rcpe.ac.uk/policy/2008/national-framework-nhs-health-care.php
http://www.wales.nhs.uk/sites3/Documents/281/Agenda%20Item%2012%20%2D%20Continuing%20NHS%20Healthcare%20Consultation%20Response%20Attachment%201.pdf

I hope this is helpful.