Continuing Health Care - Preparing to fight PCT's decision

sleepless_saver

busymumof3 wrote: »

A huge thanks to monkeyspanner, malid and the other regular contributors to this thread who continue to provide such much needed advice and experience.

We would be really grateful to receive any pointers, advice, further reference documents really anything that would be useful to bear in mind before our meeting. We are practically being ambushed by staff at every visit to ask about care homes and think that things will be rubber stamped next week.

Many thanks for reading my ramble!

Have you tried contacting Alzheimers Scotland 0808 808 3000? They must have dealt with this issue before and so should be able to advise. The IASS service which is funded by the NHS but provided independently via Citizens Advice Bureaux in Scotland may also be worth a try. I have PM'd you.

margaretclare

Hello busymumof3

I note your MIL has suffered a fractured pelvis. Probably this is due to her osteoporosis. I note also your comment that 'she shuffles along on a frame'.

I can only tell you what happened about my fractured pelvis 2 years ago. I haven't got osteoporosis, but I fell over and fractured the left pubic rami (the narrow bit at the front), reason: I have replaced hips so the hip couldn't fracture and the impact (from hitting a granite kerbstone at a petrol station!) travels along to the next weak point.

I had to be 'non-weight-bearing' until the fracture healed. That meant walking on crutches and it healed after 8 weeks. 'Shuffling along on a frame' would not have been the right thing to do because with a frame you do put weight on the affected area. Perhaps a word with a physiotherapist - you did say that she's in hospital? - would be a good idea.

It may be that the fractured pelvis, because of her osteoporosis, will never heal adequately, and especially as she's not compos mentis enough to use crutches rather than a frame. But this is just one of her problems and one that possibly needs to be highlighted. With an unstable fractured pelvis she's always going to be falling and so, one would think, a so-called 'care home' would not be able to give adequate care and supervision.

HTH

Errata

sleepless_saver wrote: »

It may be illegal but it is very common practice for hospitals and nursing homes dealing with people who have dementia to keep the main door locked to prevent confused and disoriented people wandering off and coming to harm. Very few of those people will be sectioned, but they would not be safe for five minutes out alone.

Safety is important. However, if a resident is expressing a desire to get out and is being prevented - that is illegal unless they are held under a section. and that fact is well understood by home owners et al.
See Bournewood case.

Errata

"A Decision Support Tool was completed at the time of the MultFDisciplhiary Team meeting on 271h July 2008. A Decision Support Tool would not be completed at the time of the review

I just wanted to pick up on this ^^

A Decision Support Tool is exactly that. A pre-written document that spells out the instructions to be followed when carrying out an assessment. NHS call this type of document a Tool. Obviously, this Tool will have been created to ensure consistency, accuracy and stability for all the assessments it covers. In other words, there isn't a separate Tool designed for each individual assessment case - that would be nonsensical.

SHA = Strategic Health Authority. There are 8 in England and are responsible for ensuring Dept of Health policy decisions are implemented by the healthcare organisations such as Ambulance, Acute Health, Mental Health and Primary Care Trusts. They also support Trusts in developing strategy and monitor their performance.

IRP = In some instances this stands for Independent Review Panel

HTH

mike88

I have read the above posts and would welcome comments on my mother's situation.

My mother is 89 and in a nursing home in Cardiff. She is registered blind, doubly incontinent and totally bed ridden due to dangerously low blood pressure if she gets up. Prior to this she was hoisted out of bed because she has no movement in her legs. She is on a cocktail of drugs including water tablets ,anti inflamatories and pain killers. She has no memory, is unable to converse and does'nt recognise any of her family. Basically she exists only to eat and sleep and even then needs someone to feed her. I suspect she is also tranquilised because her shouting is disturbing to other residents

She pays for her own care from savings accrued from the sale of her house except for a contribution she receives from the NHS, her pension and attendance allowance. There was some kind of assessment 2 years ago made by Social Services and the Medical staff prior to her discharge from a six month stay in hospital. Since then she has detrriorated markedly.

Is this the kind of case where the NHS should pay the total bill? If so who should be contacted? Any advice or comments would be greatly appreciated.

sleepless_saver

Errata wrote: »

Safety is important. However, if a resident is expressing a desire to get out and is being prevented - that is illegal unless they are held under a section. and that fact is well understood by home owners et al.
See Bournewood case.

I'm not disagreeing with you about the legality, I'm saying what I've seen happening in practice which is people trying very hard for minutes on end to open doors - even if they can't speak they are clearly expressing a desire to get out . But I have observed that ward staff take great care to prevent their doing so for reasons I understand even though I don't believe people should be locked up without their consent. As you will have guessed, I have very mixed views about this issue:o.

monkeyspanner

Hi busymumof3
I am sorry to hear of your MIL's condition and particularly her recent deterioration. I do not have experience of the Scottish CHC system but it does sound like our experience of the English system prior to the introduction of the DST and new framework in Oct 2007. It certainly sounds as if your MIL should at the very least have a CHC funding assessment. Pressurising relatives is a common tactic of social services and medical staff and no doubt you will be keen to remove your MIL from an environment that appears to have possibly destabilised her medical condition. I would take the following approach.

Attend the meeting and get the medical staff to spell out the extent and level of your MIL's medical conditions. It would also be useful for you to know what medication is currently being administered. Having established that you should ask them to detail the level of care that they believe is required and in what kind of establishment.

The answer to those 2 points will open up the possibility of saying that in the light of the severity and complexity of your MIL's medical condition you believe that her overiding need is medical not domestic and therefore you believe a full CHC assessment is necessary.

If you can face the possibility of your MIL remaining in the hospital I would them make it clear that you will not be making any provision for moving your MIL into a care situation until a full assessment is performed and your family is fully informed of the result and an opportunity to challenge any points in the assessment is provided. If that is not an acceptable option or an asseessment is refused you should make it clear that you intend to appeal the process and make a retrospective claim.

I hope this is helpful and I will attempt to read the scottish documents you have linked. In the meantime good luck.

Hi greenflamingo
Fortunately for us we never got as far as the SHA IRP process. A basic description of the appeal process can be found in this counsel and care factsheet. http://www.counselandcare.org.uk/assets/library/documents/27_Continuing_Healthcare_-_Should_the_NHS_be_Paying_for_your_Care.pdf

Hi Mike88
The CHC assessment process in wales is different from england and the new english DST has not yet been adopted although I believe there has been some discussion about basing a new welsh system on it. You will find some basic information about the welsh system in the link above.
It certainly sounds as though your mother should have a CHC assessment asap and it may also be possible by using the care home/medical records to make a claim to have any assessment backdated . You should ask for an assessment and retrospective review. If successful attendance allowance will cease and if a retrospective award is made then AA already paid will be deducted from any backdated payment. I hope this helps.

malid

mike88 wrote: »

I have read the above posts and would welcome comments on my mother's situation.

My mother is 89 and in a nursing home in Cardiff. She is registered blind, doubly incontinent and totally bed ridden due to dangerously low blood pressure if she gets up. Prior to this she was hoisted out of bed because she has no movement in her legs. She is on a cocktail of drugs including water tablets ,anti inflamatories and pain killers. She has no memory, is unable to converse and does'nt recognise any of her family. Basically she exists only to eat and sleep and even then needs someone to feed her. I suspect she is also tranquilised because her shouting is disturbing to other residents

She pays for her own care from savings accrued from the sale of her house except for a contribution she receives from the NHS, her pension and attendance allowance. There was some kind of assessment 2 years ago made by Social Services and the Medical staff prior to her discharge from a six month stay in hospital. Since then she has detrriorated markedly.

Is this the kind of case where the NHS should pay the total bill? If so who should be contacted? Any advice or comments would be greatly appreciated.

Hi mike88, I too live in Wales.

The clue to the answer is in the fact that your mother is in a nursing home as opposed to a residential home. This suggests she does require at least a certain level of nursing. You need to make contact with your Local Health Board in Cardiff (LHB) to initiate the CHc application. Ask for whoever manages CHc applications. Once someone is in a care home, responsibility transfers from to the LHB (although I believe you could also request this at the home which may be worth doing – two pronged attack). Does your mother have a social worker? If so, you need to contact him/her also and tell them what you want done. An assessment should then be carried out using the assessment tool (as far as I could see, Wales is using the England one). But familiarise yourself with the tool; get a list of your entire mother’s medication; find out what everything is for. You should make it clear that you are representing your mother. Do you have a Lasting Power of Attorney? I ask because your post suggests that your mother cannot make her own decisions etc.

In a nutshell, the fact that your mother is able to pay for her care is irrelevant. The important issue is the assessment of need and nursing care is paid for by the NHS.

Good luck and do not give up.

robgoingcrazy

Does anyone know what the position is on Continuing Health Care funding and end of life care?

I am not posting details yet (but will), suffice to say that my mum has been given a prognosis of "not more than a few weeks" but has been told she is very unlikely to be eligible for CHC when they move her from hospice to nursing home (I am disgusted the hospice want to move her with such a prognosis, but that's another matter).

It seems to me that while the new National Framework was supposed to make things fairer across the country (England), it took away what most local health authorities seemed to include prior to its introduction, viz a provision for recognising the last stages of a terminal illness as a primary healthcare need in itself (at least as far as I can see).

I know the National Framework includes facilities to fast track terminal patients, I think this is what happened with mum - but she was only fast tracked to a meeting which decided none of her health needs were severe or priority and most were moderate - despite the fact she is paralysed from a previous stroke, and in the doctors black and white words is clearly dying... It's very hard to hear that your mum as a few weeks to live, and then listen to people umming and arring about whether she has a primary health need or not

I'm also really confused about Coughlan - mum has a list of needs much longer than that Lady's nursing needs, and yet appears to be nowhere near the level of criteria they consider might get CHC, so we look like falling at the first hurdle already...

Any info or insight appreciated.

monkeyspanner

robgoingcrazy wrote: »

Does anyone know what the position is on Continuing Health Care funding and end of life care?

I am not posting details yet (but will), suffice to say that my mum has been given a prognosis of "not more than a few weeks" but has been told she is very unlikely to be eligible for CHC when they move her from hospice to nursing home (I am disgusted the hospice want to move her with such a prognosis, but that's another matter).

It seems to me that while the new National Framework was supposed to make things fairer across the country (England), it took away what most local health authorities seemed to include prior to its introduction, viz a provision for recognising the last stages of a terminal illness as a primary healthcare need in itself (at least as far as I can see).

I know the National Framework includes facilities to fast track terminal patients, I think this is what happened with mum - but she was only fast tracked to a meeting which decided none of her health needs were severe or priority and most were moderate - despite the fact she is paralysed from a previous stroke, and in the doctors black and white words is clearly dying... It's very hard to hear that your mum as a few weeks to live, and then listen to people umming and arring about whether she has a primary health need or not

I'm also really confused about Coughlan - mum has a list of needs much longer than that Lady's nursing needs, and yet appears to be nowhere near the level of criteria they consider might get CHC, so we look like falling at the first hurdle already...

Any info or insight appreciated.

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.