Continuing Health Care - Preparing to fight PCT's decision

Trebor16

Errata,

Suffolk County Council did not challenge a single continuing care assessment over a 3 year period! It wouldn't surprise me if this was the case nationally, with SS more than happy to take the hit.

dollywops

MIL has PSP (Progressivre Supranuclear Palsy). On reflection, we think the condition might have started, albeit insignificantly, more than 10 years ago. Anyway, to cut a long story short, shortly before Xmas 2005, we told FIL he could no longer continue looking after at home and MIL would have to go into a home. MIL has been in a nursing/care home for 3 1/4 years now. About 6 months ago, we requested a CHC assessment. Needless to say, althought MIL ticked all the boxes, she did not tick them high enough. MIL cannot speak anymore, is doubly incontinent and has to be fed pureed food, as she has difficulty swallowing. She can do nothing for herself. Apparently, she is still weight bearing, ie when 2 carers get her out of her wheelchair, they can 'walk' her to the bed. Most of the time she sleeps. She is on anti-depressants in an effort to stop her getting upset all the time and she is on medication for her condition in an effort to slow down the eventual total stiffening of her joints.

Is there anything we can do? FIL does not have a limitless money tree and what happens if G-d forbid he needs care.

Any advice or guidance would be most appreciated.

margaretclare

dollywops wrote: »

MIL has PSP (Progressive Supranuclear Palsy). On reflection, we think the condition might have started, albeit insignificantly, more than 10 years ago. Anyway, to cut a long story short, shortly before Xmas 2005, we told FIL he could no longer continue looking after at home and MIL would have to go into a home. MIL has been in a nursing/care home for 3 1/4 years now. About 6 months ago, we requested a CHC assessment. Needless to say, although MIL ticked all the boxes, she did not tick them high enough. MIL cannot speak any more, is doubly incontinent and has to be fed pureed food, as she has difficulty swallowing. She can do nothing for herself. Apparently, she is still weight bearing, ie when 2 carers get her out of her wheelchair, they can 'walk' her to the bed. Most of the time she sleeps. She is on anti-depressants in an effort to stop her getting upset all the time and she is on medication for her condition in an effort to slow down the eventual total stiffening of her joints.

Is there anything we can do? FIL does not have a limitless money tree and what happens if G-d forbid he needs care.

Any advice or guidance would be most appreciated.

I looked this up, hadn't heard of this condition before - see: http://news.bbc.co.uk/2/hi/health/medical_notes/461557.stm

Also see my post # 208.

Whilst I have no personal experience of this disease - it's said to be rare and affects men more than women - it seems like stating the bl**dy obvious that this is a brain disease and not an effect of normal ageing. Therefore it is a medical problem and not a social problem, therefore should be treated under the NHS.

Having said that, the key may be in the name 'progressive'. In other words, the boxes that may not have been ticked now may be ticked in time to come. How long this disease takes to progress to its inevitable conclusion is something I just do not know, but there is an association given in the link I quoted, which may be helpful. All these associations for different diseases have far more knowledge than the average person can gather together and they can suggest ways to help.

HTH

monkeyspanner

dollywops wrote: »

MIL has PSP (Progressivre Supranuclear Palsy). On reflection, we think the condition might have started, albeit insignificantly, more than 10 years ago. Anyway, to cut a long story short, shortly before Xmas 2005, we told FIL he could no longer continue looking after at home and MIL would have to go into a home. MIL has been in a nursing/care home for 3 1/4 years now. About 6 months ago, we requested a CHC assessment. Needless to say, althought MIL ticked all the boxes, she did not tick them high enough. MIL cannot speak anymore, is doubly incontinent and has to be fed pureed food, as she has difficulty swallowing. She can do nothing for herself. Apparently, she is still weight bearing, ie when 2 carers get her out of her wheelchair, they can 'walk' her to the bed. Most of the time she sleeps. She is on anti-depressants in an effort to stop her getting upset all the time and she is on medication for her condition in an effort to slow down the eventual total stiffening of her joints.

Is there anything we can do? FIL does not have a limitless money tree and what happens if G-d forbid he needs care.

Any advice or guidance would be most appreciated.

Based on the symptoms and degenerative nature of your MIL's medical condition I think you should ask for another assessment asap. If possible ask to be present so that you can argue the assessment classifications at the time with the assessor. Prior to that assessment I would recommend you familiarise yourself with the DST(Decision Support Tool and the continuing healthcare framework see previous posts for links). If possible work through the DST yourself and make your own judgement as to classifications prior to the assessment so you have a position to defend. If possible take another person with you as a witness to the discussions. Ask for a copy of the assessment and adjudication. Keep a record of any correspondence as the PCT sometimes "can't find" relevant documents when the IRP takes place

A couple of things to bear in mind here which the CHC framework spells out:
1. A well managed need is still a need e.g. if behaviour has and would be a problem but is being managed by medication this should still be assessed as if the meds were not being given.
2. If there is any doubt about a classification the worst case should be taken.

If unsuccessful again ask for an independant review panel with the PCT and if unsucessful with the IRP you can take it to the SHA and then to judicial review. There are specialist solicitors who can help you on a no win no fee basis and will carry out an initial review for nothing. If you would like a suggestion PM me.

IMHO I think you would also have a strong case for a retrospective review as the previous decision is probably suspect.

The PCT's first response will nearly always be no so don't give up.

As regards the financial position I think your FIL would be well advised to take specialist advice as there are a number of wrinkles in the system which could prevent him having to pay further.
For example:
1. Any joint assets should have been separated at the time of your MIL going into a care home. This prevents the council assessing half the value of a reduced shared asset as only your MIL's original share should be taken into account.
Original shared asset £50000, MIL's share £25000
Depleted shared asset after £15000 care home fees £35000, MIL share £17500
But actually if separated MIL's share should be £10000.

2. If your FIL is over 60 and living in the family home the value of the home should be disregarded when assessing if a council contribution is due.

3. Any asset which has an insurance element should be disregarded from the asset calculation. This can apply to certain assurance bonds.

4. Your FIL does not have to disclose his income or assets to the council but can be asked to contribute if the council thinks he is able.

There is a very good fact sheet about care home funding here:
http://www.counselandcare.org.uk/assets/library/documents/16_Care_Home_Fees_Paying_them_in_England.pdf

I hope this helps.

CHCscandal

This thread is so informative can it PLEASE be made a sticky.
In order to help others attempting to find information on this very contentious subject.
As posted many times on this thread, details about eligibility for CHC are not advised by the NHS or the Local authorities readily if at all.
In 21st century UK until changed it is now unacceptable action/inaction by the social services & the NHS, until these professionals are held accountable for not carrying out their statutory process and procedures at discharge for instance, things will not change.:money:

greenflamingo_2

We are still waiting for this meeting and now the lady who dealt with us at the PCT has left and we dont know who is supposed to replace her.

I have "sacked" my solicitor as basically all he did was correspondence which I could have done myself and charged us around £4000 accompanied by ever-increasing demands for money. This appeal has been churning on since October 2008 and still no resolution.

I received records from my father's nursing home clearly stating that he was doubly incontinent, immobile in a wheelchair having to use a hoist, had heart and breathing problems and severe rheumatoid arthiritis as well as skin and bed sore problems - he is apparently a borderline case according to the PCT and has to self fund. The PCT have put a charge on his house.

I am wondering why when we asked for a reassessment of my father all we received was a psychiatric and nutrition report - his other domains were not reassessed and the PCT turned down our appeal - hence our application to the IRP.

I am wondering whether I should send the records from the nursing home to the PCT in case we get to the review and the PCT say they have never seen them and try to delay the IRP meeting or whether by not sending them to the PCT this would work in our favour as surely the patients family should not have to liaise between the PCT and the nursing home to check records have been received. Is the role of the PCT to check these type of anomalies?

Can someone pse help me and advise what other steps I should take (if any)?

chcfan24

Greenflamingo I wouldn't send the PCT a copy of care home notes, they are more than capable of calling at the home and acquiring a copy, in fact they should have provided you with copies of all your father's medical notes/records. If I was you, I would write to the CEO PCT and copy it to your MP, requesting a date for the review, in the meantime prepare your own case, download a copy of the National Framework and the DST, then you have arguing power if they don't score similar to your scoring.

I can't give you links to the DST (Decision Support Tool), as I am a newcomer and not allowed to post links, but it is easy to find, it is the tool the PCT use to score in the various categories. Another tool worth downloading is the Waterlow Chart which has two sides, this tool scores for Skin/Ulcer Risk.

I started by listing all medication my dad was prescribed, then look up on the internet what the side effects are of that medication. This was a useful exercise for me as I found the antipsychotics he was being given to sedate him were never prescribed for him.

List his conditions and score your dad with the DST.
Good Luck

Errata

Link for Decision Support Tool -
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912

monkeyspanner

greenflamingo wrote: »

We are still waiting for this meeting and now the lady who dealt with us at the PCT has left and we dont know who is supposed to replace her.

I have "sacked" my solicitor as basically all he did was correspondence which I could have done myself and charged us around £4000 accompanied by ever-increasing demands for money. This appeal has been churning on since October 2008 and still no resolution.

I received records from my father's nursing home clearly stating that he was doubly incontinent, immobile in a wheelchair having to use a hoist, had heart and breathing problems and severe rheumatoid arthiritis as well as skin and bed sore problems - he is apparently a borderline case according to the PCT and has to self fund. The PCT have put a charge on his house.

I am wondering why when we asked for a reassessment of my father all we received was a psychiatric and nutrition report - his other domains were not reassessed and the PCT turned down our appeal - hence our application to the IRP.

I am wondering whether I should send the records from the nursing home to the PCT in case we get to the review and the PCT say they have never seen them and try to delay the IRP meeting or whether by not sending them to the PCT this would work in our favour as surely the patients family should not have to liaise between the PCT and the nursing home to check records have been received. Is the role of the PCT to check these type of anomalies?

Can someone pse help me and advise what other steps I should take (if any)?

If the PCT are dragging their feet I would contact the relevant SHA (Strategic Health Authority) and ask them to progress the case. The SHA can get involved in a reveiw of process and the PCT's don't like this to happen because invariably the SHA are critical as proceedure is not normally followed. We telephoned the SHA several times to complain about the PCT not getting on with my MIL's case and not following proceedure, when they realised we were going to carry on telephoning things miraculously started to move at the PCT.

margaretclare

When the PCT say 'he is a borderline case' what does this actually mean? Borderline between what? I know the issue of funding comes into it, but does it mean borderline between needing nursing and needing 'care'?

As I've written before, any use of the Waterlow Scale means nursing. It's a nursing tool.