Continuing Health Care - Preparing to fight PCT's decision

weanie

My sympathies too Biggles.
It must be hard to take issue at this time and the temptation must be to drop it - but I suspect such a choice would become irritating to you in the future. Good luck with your choices.

monkeyspanner

Hi Biggles

I am very sorry to hear of your loss.

First of all I would say it is not at all unusual for relatives not to be informed and in some cases deliberately kept out of the loop.

Even if you decide not to persue a retrospective claim my advice would be to gather as much information now before it "disappears". This should include care home records, GP records, hospital records if appropriate. You should also collect your family's recollections of your mother's health and care needs with dates if possible.

I would ask for a copy of the DST from May 2008 and the panel decision based on that DST. I would also point out that you would have expected to be notified of both the assessment and the decision. Once you have this information you should be in a position to decide if you think the assessment was fair and accurate.

Retrospective appeals are not unusual and when we were working through this process we were told there were outstanding claims in my MIL area dating back 8 years further complicated by lost records.

If you would like any specific advice please feel free to ask and I will try to help.

busymumof3

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

My MIL has been in a hospital assessment ward for almost 9 weeks. She was diagnosed with vascular dementia 3 years ago at the age of 62. She also suffers from cardio vascular disease, rheumatoid arthritis and osteoporosis. Prior to moving to the assessment ward,she was in a specialist EMI unit of a Nursing Home however staff there were unable to deal with the behaviours she was displaying - physical and verbal aggression and severe levels of agitation, restlessness and a great deal of personal distress. Whilst in the EMI unit my MIL was fully mobile, continent and able to feed and dress herself with prompting but was resistant to personal care.

Since being on the assessment ward my MIL's medications have changed and she is now prescribed an anti-psychotic (the third they have tried but the only one to have an effect on her aggression and agitation) as well as a different anti-depressant and night sedation. Most of the agitation and all the aggression has gone as the meds have increased however, MIL's condition has declined considerably whilst on the assessment ward where she has also suffered a fractured pelvis. She is usually asleep and hard to wake when we visit but nights can be very disturbed to the extent that staff are considering a fully reclining chair for sleeping. She now shuffles with a frame, paces corridors endlessly and is at high risk of falls (wears hip protectors), is bowel and sometimes urinary incontinent (pads and regular toileting), is completely dependent on staff for spoonfeeding and has been losing weight rapidly - being fed supplements. Additionally, MIL has severe cognition problems, basically no short term or long term memory (but does still recognise our faces, not names), severe communication problems - cannot be understood and repeats single word as in a stammer and is still resistent to personal care.

The anti-psychotic medication as we understand it is not advisable for use in dementia patients in the long-term and carries a higher degree of stroke risk so we are understandably concerned about its use and also the possibility of her being overmedicated at present.

My MIl was managing at home with 3 carers a day just 5 months ago and even at the nursing home we were able to take her out on visits. She has declined so rapidly over the last 2 months she is practically unrecognisable and looks 10-15 year older than she is.

Despite everything above, my MIL is declared fit to leave the assessment unit and we are being pushed to find a place at a nursing home.

From reading this thread and trawling the web we have stumbled on the existance of NHS Continuing Care. Tellingly, the Care Manager (Social Worker) and the Ward Manager on the hospital assessment ward my MIL has been on for the last 8 weeks say that they have never heard of NHS funding in a care home environment and "she is not bad enough for the continuing care NHS ward". "...but she has her own house" is a direct quote from the Care Manager.

We are in Scotland which I appreciate has different legislation. To date we have tracked down the appropriate legislation http://www.sehd.scot.nhs.uk/mels/cel2008_06.pdf and a helpful factsheet from Age Concern Scotland http://www.ageconcernscotland.org.uk/helping_you/factsheets/17_hospital-discharge-arrangements-and-nhs-continuing-health-care-services

The national eleigibility criteria seem similar to that of England ie:

• The complexity, nature or intensity of the patient’s health need:
• The need for frequent, not easily predictable, clinical
interventions;
• The need for routine use of specialist healthcare equipment or
treatments requiring supervision from specialist NHS staff; or

• A rapidly degenerating or unstable condition requiring specialist

medical or nursing supervision.

However local Health Boards are required to set their own local criteria for NHS continuing care and assessment should use the single shared assessment approach as a model as opposed to the National Framework Decision Support Tool. Basically we are struggling to find any a model of the single shared assessment so have no idea what this covers.

We have asked our Care Manager to provide us with the local criteria for eligibility for continuing care, to carry out a full assessment and to provide us with a written copy of this. We have had no response to this as yet but have been invited to a meeting with the consultant next week to discuss "progress with care homes etc"

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!

Errata

So sorry to read the difficulties you're having. Someone else will be along soon to help you out with more detailed info, but in the meantime it seems to me that there can be NO "progress with care homes" until the assessment is carried out as it could indicate which care homes will be most suitable. HTH

EdInvestor

busymumof3 wrote: »

My MIL has been in a hospital assessment ward for almost 9 weeks. She was diagnosed with vascular dementia 3 years ago at the age of 62. She also suffers from cardio vascular disease, rheumatoid arthritis and osteoporosis. Prior to moving to the assessment ward,she was in a specialist EMI unit of a Nursing Home however staff there were unable to deal with the behaviours she was displaying - physical and verbal aggression and severe levels of agitation, restlessness and a great deal of personal distress.

I don't suppose she was sectioned under the Mental Health Act during this process, was she?If she was the NHS must pay for all her future care.

busymumof3

Thanks Errata - consultant and nursing staff have suggested 2 or 3 experienced EMI Nursing Homes who could cope with my MIL. One has no vacancies and we have visited the others. Neither would have topped our list 5 months ago but things have changed dramatically since then. MIL's aggression has gone so the assessment unit are basically saying "job done".

EdInvestor - no MIL was not sectioned although when she was taken into the assessment ward as an emergency we were told that if she objected she would be sectioned. Although MIL was battering down doors she was not capable of vocalising that she didn't want to be there - has not been able to say anything meaningful or coherent for a long time. She spent several days on one-to-one watch before meds kicked in.

Thanks both

Errata

This seems a bit odd. If your mum was trying to get out but nobody would open the door for her, then she was being prevented from leaving against her will. It's been accepted for a couple of years now that this is illegal when the person hasn't been sectioned.
It doesn't matter that she didn't have the language to enable her to ask to be let out - someone who didn't speak a common European or Asian language would have been in the same fix.
As Edinvestor writes, sectioning makes a huge difference.
I wonder how long the old age psychiatrist has suggested your mum try the latest anti-psychotic for before they are confident that it's completely suitable and your mum is stable on it.
I guess the important thing is that mum is as comfortable, settled and well cared for as possible, however that's funded. I'm so sorry your mum has to go through this, it's rotten for family members too. Best wishes.

greenflamingo_2

Hi all

The battle for CHC funding is very exhausting and stressful we have a basket of paperwork about a foot high already and you really need to be determined and tenacious to have any chance of fighting your way through all the procedures and paperwork.

After instructing a specialist solicitor to appeal the decision of the PCT (basically the panel overrode all of the medical reports concerning my FIL) we are now at the Appeal to SHA stage.

Below is basically a response from the "Funded Nursing Care and Continuing Care Community Services Manager" to a query from our solicitor concerning the DST:

"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.
The review meeting is held to consider any changes that may have occurred to the patient since the original assessment was completed. If there had been any significant changes the reviewing nurse would have commenced the Continuihg Healthcare process.
If I am enclosing a copy of the original documents discussed at the Eligibility Panel."

In response our solicitor has written back to this manager with the following:

"Meanwhile, the SHA have written to us enclosing a copy of the IRP procedure. Following the local dispute resolution process the procedure requires the PCT to provide the family with a “written outcome report”. Would you please provide me with a copy of this report and identify the decision letter containing the final decision of the PCT that is currently under appeal? "


Basically we dont know what the IRP is or written outcome report or what the SHA involves (apart from another tier on a relentless slog to get funding!). Can one of our experts on this board plse enlighten us on the SHA as we are reluctant to ask our solicitor due to his high charges and my FIL very limited funds which are rapidly dwindling as he has to pay £400 per month contribution to the nursing home whilst the local authority has started proceedings to put a charge on his property for the funding.





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sleepless_saver

Errata wrote: »

This seems a bit odd. If your mum was trying to get out but nobody would open the door for her, then she was being prevented from leaving against her will. It's been accepted for a couple of years now that this is illegal when the person hasn't been sectioned.

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.

malid

greenflamingo wrote: »

Hi all

The battle for CHC funding is very exhausting and stressful we have a basket of paperwork about a foot high already and you really need to be determined and tenacious to have any chance of fighting your way through all the procedures and paperwork.

After instructing a specialist solicitor to appeal the decision of the PCT (basically the panel overrode all of the medical reports concerning my FIL) we are now at the Appeal to SHA stage.

Below is basically a response from the "Funded Nursing Care and Continuing Care Community Services Manager" to a query from our solicitor concerning the DST:

"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.
The review meeting is held to consider any changes that may have occurred to the patient since the original assessment was completed. If there had been any significant changes the reviewing nurse would have commenced the Continuihg Healthcare process.
If I am enclosing a copy of the original documents discussed at the Eligibility Panel."

In response our solicitor has written back to this manager with the following:

"Meanwhile, the SHA have written to us enclosing a copy of the IRP procedure. Following the local dispute resolution process the procedure requires the PCT to provide the family with a “written outcome report”. Would you please provide me with a copy of this report and identify the decision letter containing the final decision of the PCT that is currently under appeal? "


Basically we dont know what the IRP is or written outcome report or what the SHA involves (apart from another tier on a relentless slog to get funding!). Can one of our experts on this board plse enlighten us on the SHA as we are reluctant to ask our solicitor due to his high charges and my FIL very limited funds which are rapidly dwindling as he has to pay £400 per month contribution to the nursing home whilst the local authority has started proceedings to put a charge on his property for the funding.

I do not claim to be an expert, I am just a regular on the forum and have gained my knowledge form the advice and guidance of others on here. IRP is the Independent Reconfiguration Panel. Strategic Health Authority ia part of the structure of the National Health Service in England and it runs the NHS at a local level. The SHA is 'responsible for implementation of national policy at a local level and act as a link between NHS organisations and the Department of Health.' 'PCT – Primary Care Trust is Responsible for commissioning all health care in their community. PCTs have the same boundaries as local authorities.' I would say that SHA deals with the policy side of things and the PTC has to implement it (others may be more expert here)

Everything to do with CHc funding is complex, confusing disjointed, lengthy and obstructive. I think this may be the case as the NHS is trying to save spending such monies if it can. In Wales, this should mean that the Local Authorities (Social Services) are more supportive as it would save them money if CHc was granted. It is crucially important not get invoked with ‘eligibility’ to self fund etc as this is irrelevant in seeking CHc funding.

To anyone who is involved in seeking CHc funding, disputing ‘so called’ decisions etc. please, please read through these pages. It does take time and there are links to many other documents sites which can be time consuming; however, the information here and in the linked documents/sites was invaluable to me. As long as you read through the information thoroughly; also seek out information about your local NHS, LHB/SHA/PCT and their processes including appeals’ procedures etc, you should be able to deal with all this without using an expensive solicitor (I have said the same about seeking Lasting power of Attorney – YOU DO NOT NEED A SOLICITOR).

In this particular instance, there seems to be two issues to appeal/dispute:

• The process for arriving at the original decision – you should ask for all the paperwork; quote nhs protocol; test cases etc
• The actual decision – which could be flawed in light of 1.

Busymumof 3
However local Health Boards are required to set their own local criteria for NHS continuing care and assessment should use the single shared assessment approach as a model as opposed to the National Framework Decision Support Tool. Basically we are struggling to find any a model of the single shared assessment so have no idea what this covers.

We have asked our Care Manager to provide us with the local criteria for eligibility for continuing care, to carry out a full assessment and to provide us with a written copy of this. We have had no response to this as yet but have been invited to a meeting with the consultant next week to discuss "progress with care homes etc"

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.

I have had a quick look at the Scottish Government document you refer to. As far as I can determine, the document implies that there is a Single Shared Assessment (SSA) which is national to Scotland; not a local tool. If nobody is providing you with this, write/contact your Assembly Member (you could even email which would be quicker). Officials will have to respond. I remain staggered, although not surprised, that the professionals you are dealing with claim to have no knowledge of CHc in a care home environment. In Wales, I think this is available even if you are in your own home (although this would be expensive and possible not practical) but I think that the care home would need to be a Residential Nursing Home as it would need the resources to manage the nursing care required by CHc funding.

One thing that I would strongly advise, do not get into any discussion on your MIL’s financial situation particularly her ability to self fund in a care home. This has nothing to do with your request for CHc. The comment about her having her own home is out of order. We were in a similar position with my uncle and he did end up in a Residential Nursing Home albeit for 9 days until he was re-admitted to hospital where he passed away within a few weeks (even then there was pressure to send him back to the home but I refused and forced a re-assessment – although I had no evidence of the original). I have to say that the staff on the last ward he was on were very good and did not suggest his discharge once I ‘assertively’ pointed out that I was seeking CHc for him.

Therefore, fight as hard as you can to ensure that she is not discharged. Insist that you want the care process/requirements dealt with before you can even think about a nursing home.

Good Luck to you all!