NHS Continuing Healthcare - about to join battle

beaujolais-nouveau

My mother has been in a private nursing home, privately-funded, for nearly five years. She:

* is doubly incontinent
* is unable to stand up - not just unable to "weight-bear" but due to neurological damage she can't keep her balance
* has poor swallowing reflex and therefore in danger of choking
* is disoriented in time and place, unable to understand conversation or reliably communicate her needs, and there is no evidence of any memory
* has to be hand-fed and given medication

We asked the local PCT to assess my mother for NHS Continuing Healthcare, as her own money is about to run out, and the resulting Decision Support Tool (DST) document appears to have been completed by someone who did not understand what they were writing (and they have decided that she is ineligible), Eg

1. Although the report records that she cannot speak and has a severe level of cognitive impairment, nevertheless - it claims - she submitted a statement of consent! (I have asked for a copy of this statement of consent, as it would be a blummin miracle if she had submitted a statement of any kind; it is more than four years since she has been able to understand and consent to anything.) No one in her family was asked to attend the multidisciplinary panel.

2. She is doubly incontinent, has a Waterlow Scale of 28 (nursingtool for assessing the risk of skin breakdown) yet "her skin is currently intact": "currently intact" is not a measure of risk.

3. Several of the nursing assessments I have seen (the nursing home copies them to me) record her poor swallowing reflex, yet the DST documentation states that "there are no swallowing problems".

There is nothing about her history of falls (she had two or three after she was admitted to the nursing home, too, mainly due to her trying to stand up by herself and not calling for help), strokes - one of which caused her to lose the use of her left arm and hand about 14 months ago - and failure to take prescribed medicines (before she went into hospital after a fall).

In respect of all the years up to now, we have already asked for a retrospective assessment from another county (my mother lived elsewhere when she was first put in a care home by the social services) because they failed in their statutory obligation to assess her at all for NHS Continuing Healthcare. We her children had to take a lot on trust, as we did not know what she was entitled to, but they just let the social services take over and organise everything. The only social worker case conference to which I was invited was held at a time when her own GP could not attend.

We are appealing this latest decision, as the DST is riddled with errors, misrepresentation and omissions. It mentions that the Next of Kin made a statement (to say "whether they consider that the multidisciplinary assessment accurately reflects [her care needs]"); well, that would have been a statement by me, and I have not been asked to make a statement. The list of "key professionals involved in the care of" my mother does not mention any of the nursing home staff who have the daily care of her.

My mother cannot do a thing for herself, doesn't know anything about the day or time and doesn't appear to recognise her own children any more, the next stroke might kill her, and I was not expecting her to be found ineligible for NHS Continuing Healthcare. I was very shocked and very angry.

I am appalled to find that, as well as earning my living, all of a sudden I must make time to prepare and send in a formal appeal within 28 days but I have to see this through for my mother's sake. Does anyone know, please, if there is a formula that one has to use for the appeal?

monkeyspanner

Being refused at the first assessment is not unusual however obvious the patient's medical needs are, as in your mothers case.

Good luck with the appeal, is this going to be a PCT arranged IRP (independant review panel)?

If successful you can claim expenses both for your time and out of pocket expenses and interest on the payments which should have been made by the PCT.

beaujolais-nouveau

monkeyspanner wrote: »

Being refused at the first assessment is not unusual however obvious the patient's medical needs are, as in your mothers case.

So I see .... from reading this forum and others. The process has turned into a travesty: the PCT's assessment of my mother mentioned by way of medical history only that she had had "a stroke" and history of another (mental) disorder. My jaw hit the floor when I realised that they had ignored -

* ischaemic heart disease
* history of myocardial infarction
* dyspraxia
* history of falls
* broken wrist (2003), broken hip and surgery (2005)
* MRSA (2005)
* urinary tract infection (2005, due to catheter)
* history of hypertension
* history of refusal to take prescribed medication
* multiple Transient Ischaemic Attacks (TIA)
* loss of use of left hand and arm following TIA (2008)
* poor swallowing reflex (danger of choking)

monkeyspanner wrote: »

Good luck with the appeal, is this going to be a PCT arranged IRP (independant review panel)?

I have now made a formal request that this matter be referred to a Continuing NHS Health Care Independent Review Panel. The "grounds" probably would not apply to everyone's case (I certainly hope not), as these are failure of process with the result that the decision is not fit for purpose.

monkeyspanner wrote: »

If successful you can claim expenses both for your time and out of pocket expenses and interest on the payments which should have been made by the PCT.

I have started to compile a Schedule of Costs.

It is amazing and depressing how few civil servants - NHS, Courts Service, Leasehold Advisory Service - adhere to the Civil Service Code.

The Code sets out the four core values that underpin every civil servant’s work.

• Integrity – putting the obligations of public service above personal interests
• Honesty – being truthful and open
• Objectivity – basing advice and decisions on rigorous analysis of the evidence
• Impartiality – acting solely according to the merits of the case and serving governments of different political parties equally well

I have some experience of acting in person - eg appealed a LVT decision to the Lands Tribunal and won - and of the Bar Council Direct Access scheme but it takes years out of your life. :-(

ukmaggie45

Just wanted to wish you the very best of luck with this.

Both my parents died in 2007, both had to go into nursing homes, and I had fully intended to chase up CHC for my Dad, but then Mum was admitted to hospital and then nursing home... It was all a nightmare at the time, and so time consuming just trying to visit that we never followed the CHC path. And once they died we (OH and me) were so exhausted we didn't continue to try.

I do think it's fantastic that there are some wonderful people who are prepared to take on the heartless state system and pursue what their relatives are entitled to. It all helps to create more precedents to help others. So thank you for what you are doing.

My very best wishes to you beaujolais-nouveau.

weanie

Good luck from me too - I share UK Maggie's sentiments and look forward to hearing of your success.

beaujolais-nouveau

ukmaggie45 wrote: »

Just wanted to wish you the very best of luck with this. ... My very best wishes to you beaujolais-nouveau.

Thank you

ukmaggie45 wrote: »

Both my parents died in 2007, both had to go into nursing homes, and I had fully intended to chase up CHC for my Dad, but then Mum was admitted to hospital and then nursing home... It was all a nightmare at the time, and so time consuming just trying to visit that we never followed the CHC path. And once they died we (OH and me) were so exhausted we didn't continue to try.

I'm sorry - 2007 is not so long ago - I can relate to that "nightmare", although for you it was twice as bad as it has been for me. Looking back, my life was put "on hold" for 12 months after my mother's fall - supporting her (and dealing with her huge anger), finding a better nursing home, fighting the Social Services (who didn't want her moved to be nearer her family!!!!), moving her, clearing her flat (this bit with the help of my brothers), selling her flat, etc etc - I couldn't go after new work (I am self-employed) and sometimes I missed deadlines and had to come up with creative explanations as to why. I remember especially one afternoon, standing in the corridor with my brother, outside my mother's room while - inside her room - a lawyer and the GP tried to ascertain whether or not she knew what she was doing as she signed the contract of sale for her flat. (We were not allowed to remain in the room in case we were influencing her.)

ukmaggie45 wrote: »

I do think it's fantastic that there are some wonderful people who are prepared to take on the heartless state system and pursue what their relatives are entitled to. It all helps to create more precedents to help others. So thank you for what you are doing.

I am conscious that the outcome of every case appealed will set a precedent and I do hope that I can make the path of the next person easier. My mother's nursing home is in a county already mentioned on this forum but, in case the PCT there visits this forum, I am not going to name them yet!

beaujolais-nouveau

weanie wrote: »

Good luck from me too - I share UK Maggie's sentiments and look forward to hearing of your success.

Thank you. I certainly hope to be able to pass on something useful.

Willman_Rodders

Goodluck beaujolais-nouveau. I wish you success.

I am, I suspect, about to go through the process of challenging the NHS decision for my father; I am presently awaiting formal advice of the panel's decision - but I understand it will almost certainly be a decline of funding.

Briefly my father has severe alzheimers and vascular dementia. My father has similar symptoms to your mother.

I recently spent some time initially challenging the assessor before we worked our way through the DST assessment form, domain by domain. At the end of the discussion I realised that my father will probably never qualify for funding care unless there is a major deterioration in the quality of his already low-level of health. I'll explain.

There are, as you are probably aware, 11 domains (domains are areas of assessment). To qualify for full funding you [apparantly] need to have a number of domains scoring just 1 or 2. 1 equates to 'priority' and 2 equates to 'severe'.

The first hurdle: a number of domains you simply cannot score less than 3; they just don't bother assessing the criteria once it gets so bad. Continence, communication, and phychological & emotional needs I recall as the domains where you cannot score less than 3. So that only leaves 8 domains where such a score can be achieved.

For 'Drug therapies and medical control' dad presently scores 4. He is 100% dependant upon the nurses; they administer the drugs to my father. He cannot take them himself. This domain is therefore unlikely to worsen in the future. That leaves 7 domains to score.

'Altered state of consciousness' is difficult to determine. Dad is in world of his own, drifting in and out of sleep, and I suspect at times consciousness. I cannot remember the lower criteria but I do recall thinking he was unlikely to get down to scores of 1 or 2. And if he did then other domains would improve. So that leaves just 6 domains to score some 1's and 2 marks.

'Breathing' is unlikely to change unless he picks up a bug. That leaves 5 domains.

Some domains counterbalance each other. For example: as my father's mobility worsens then his behaviour (in the form of reducing aggression) improves; my dad has simply lost the energy to fight. So where we originally had a score of 4 and 3 on the 1st assessment, we now have a score of 3 and 4 respectively.

Ironically, my dad walked unaided for the first time in 4 months the other day. Not far, just down the corridor. As a result the assessor is wondering if his care needs have now increased - because he is now at risk of falling (whereas before he could not fall and therefore his needs were minimal).
Anyway, that now leaves us with 3 domains.

The nurses are doing a good job. Dad cannot feed himself and so they now feed him, each and every meal. He has a balanced diet, containing suppliments. It doesn't look particularly appitizing but ... As a result his weight has increased. His nutrition domain score has reflected this improvement, from a 3 to a 5. So now we have just 2 domains remaining.

Cognition is low. He forgot our names several years ago, and now there is no expression of recognition in his face when we visit him. In fact there is no facial expression at all about anything. But even with this domain dad only scores 2 - which is probably the lowest score possible for this domain.

And so to the last domain. Skin and Tissue. The assessor explained that he would need to have physical tears in his skin, and open sores, to qualify for a score of 2. Dad's skin is intact. thin, but intact. The fact that he is in pain [we suspect] with the other ailments is irrelevant to this assessment.

And so that's it. Dad will probably never qualify.

The assessor did explain that the assesment was about needing specialist nursing care for my father, and not general nursing care 24/7.

To add insult to injury the care home fees have now used up all dad's savings. When we mentioned this the assessor explained that if we approached Social Services they would defer funding until any challenge to the NHS assessment had been resolved, which could be some time off.

So where do we go now? It is so frustrating.

I hope the above gives yourself and other readers a snippet of information as to how the system appears to work. As Dad's assessor said ... "It's all about funding. And there isn't any available at present. Existing cases are now being reviewed early, with existing and long-standing recipitants now being declined at review."

Anyway as I said ... Goodluck beaujolais-nouveau. I wish you success. If you find the solution please let us know.

beaujolais-nouveau

Willman_Rodders wrote: »

I am, I suspect, about to go through the process of challenging the NHS decision for my father; I am presently awaiting formal advice of the panel's decision - but I understand it will almost certainly be a decline of funding.

Briefly my father has severe alzheimers and vascular dementia. My father has similar symptoms to your mother.

I recently spent some time initially challenging the assessor before we worked our way through the DST assessment form, domain by domain. ... So where do we go now? It is so frustrating.

Don't lose heart. But it does sound as if there is quite a bit of work to be done on that assessment. When you receive the formal decision, you could contact the Alzheimers Society and ask them to comment on the decision - they seem quite proactive. In the meantime, you can ask the care home for copies of their daily care plan reports, hospital reports. You will need these to check that what is said in the assessment is actually accurate.

anamenottaken

beaujolais-nouveau wrote: »

We asked the local PCT to assess my mother for NHS Continuing Healthcare, as her own money is about to run out, and the resulting Decision Support Tool (DST) document appears to have been completed by someone who did not understand what they were writing (and they have decided that she is ineligible), Eg

.......

In respect of all the years up to now, we have already asked for a retrospective assessment from another county (my mother lived elsewhere when she was first put in a care home by the social services) because they failed in their statutory obligation to assess her at all for NHS Continuing Healthcare.

Are you now applying to the correct PCT? Should it be the PCT in the area she resided at the time that the need for continuing healthcare arose?

I know that shouldn't affect the way the "local PCT" are dealing with the case but, if you are applying to the wrong PCT, will they at sometime realise that I would have thought.

beaujolais-nouveau

anamenottaken wrote: »

Are you now applying to the correct PCT? Should it be the PCT in the area she resided at the time that the need for continuing healthcare arose?

Yes, I have asked the PCT in the West Country, where my mother lived, and where she was discharged straight from hospital to a care home, to conduct a retrospective assessment. They failed completely to conduct an NHS Continuing Health Care needs assessment before she left hospital, and I can prove it from contemporary documents.