Continuing Health Care Appeal Letter to Secretary of State for Health

[sharina]

Please find letter sent to above. I will never recover from having to assess whether my mother's cognition needs were high or severe four weeks before we decided to let her die (She had no say and was not present when the GP decided not to tube feed).I am sure that you guys are well aware of the wording to be severe as follows :

Cognitive impairment that may include, in addition to any short-term memory issues, problems with long-term memory or severe disorientation. The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate even basic needs and to protect them from harm, neglect or health deterioration.

My mother did not merely find it difficult to make decisions about key aspects of her life...She was completely unable to do so hence was in a care home against her will (our choice social services best interest decision ) had no say in the choice of home,was told when to eat,had limited choice what to eat,was told to take medicine against her will (some secreted on the carpet eg senna) was not able to go home to see dad when she wished,did not leave the care home freely etc. She would search for dead people and cats.

If my mother was not severely cognitively impaired than she was falsely imprisoned by social services who had no right in making a best interest decision without involving her.The GP also did not try and obtain her consent when he decided not to tube feed her two weeks after the CHC assessment.If she had any ability to make decisions he should have tried to involve her . It was clear to all but the the cruel nursing assessor that my mother did not have any ability to assess basic risks and relied on the care home GP and family to protect her from harm and ultimately to allow her to die without any more treatment.


I quote the nursing assessors words (My mother was unable to contribute to the assessment due to her cognitive impairment.) She was taken off to another room. The irony escaped the nurse assessor.


I doubt the S of S will respond but he is allowing a gross reinterpretation of the decision support tool and causing grief to the family as we were coming to terms with my mothers obvious impending death.

Paragraph removed
.................................................. ............................................


Dear Mr Lansley
Further to my email last night please find below chronology of events.If I had not contacted the nurse assessor before mum died the Panel were to be advised by her to refuse our Appeal for CHC on the 18th June 2010. My mother died moments before the Panel was due to meet.It is shameful and ridiculous.The cause of death was frailty.That does not happen over night.I wish I let the panel meet to refuse her CHC on her death bed it would have been an absolute joke

My mother died on the 18th June 2010.She was a resident at (name of hospital removed by Moderator) . We did not want her to die in hospital. The GP completed an end of life plan indicating that she should not go to hospital. (See End of Life Preference and End of Life Strategy)

July 2009 Stopped eating other than tiny amounts. Estimated weight 55 kgs based on past hospital records (60 kgs in 1998)

August 2009 she had a small stroke,in atrial fibrillation and heart failure. She went to (name of hospital removed by Moderator).weight 51 kgs.She did not qualify for CHC care although she was not eating. Her prognosis was one to two years according to the stroke Consultant. She had an unsafe discharge (weight 45kgs?) according to Rapid Response Team .At home could not eat and became dehydrated.

October 2009 readmitted to (name of hospital removed by Moderator). She had dangerous weight loss to approx 42kgs.Started on Sodium Valproate, (no discussions with my father before starting drug off licence in breach of MCA ) There was rapid artificial weight gain.(42-49kgs.)Sodium Valproate is used for epilepsy and not approved by Nice for dementia (See Cochrane report).It needs more testing before being used to control agitation in dementia.The staff doctor who prescribed it failed to note her concerns re weight loss.Mum did not qualify for CHC and also told she only needed a residential home with dementia and not a nursing home. As she left hospital she was already losing that weight (47 kgs)

February 20010 Care home concerned re weight loss(44 Kgs) and a psychiatrist subsequently prescribed Mirtazapine. April Mum had an fection.


May 13th Full CHC assessment by name removed by Moderator . Mum's weight was 42.5 Kgs but she initially assessed nutritional needs high but reduced to moderate on the 18th May 2010 because mum ate a couple of spoons of yoghurt! . I took footage of mum not eating.

May 26th ????Care home declared mum end of life. She was withdrawn and refusing to eat. May 31st GP declared that mum was at end stage and a care plan was drawn up including a direction that the care home should feed for comfort only.(They had spent hours with a spoon trying to feed her.) The following Tuesday she had "shock" I believe caused by dehydration/movicol and lack of food. The "Out of Hours doctor wanted to send her to hospital but my father did not want her to die in hospital.


9th june 2010 The GP visited.He decided not to give her half a fentanyl patch or a pump driver but to control pain by calpol. We saw the GP no more. He alleged in writing that a GP visited her on the day she died to assess treatment but when challenged because six people were in her room from the early hours until death accepted that there was no such visit until after she died… He also said there was one other visit but again the family were there every day but did not witness this.

16th June the nurse assessor comes back out with a lot of persuasion and decides to recommend CHC funding. Despite all the above she decided mum had a "gradual deteriorating" condition.(She was lying in bed dying with the family surrounding her!) She did not fast track her. She now maintains it was not her job she was just assessing mum for the Appeal and it was the other PCT’s job.


Friday 18th June 2010 mum died. She had no pain relief whatsoever just Calpol. She could not take calpol as she was dying because she could not swallow. During the preceding days she spent hours thrashing and hitting the sheets with her fist. She had complete organ failure. The death certificate recorded death by dementia and frailty.
Why were we still paying for her care as she was dying when even the Catholic church had managed to give her the last rites over two weeks beforehand? Why is the nurse who did that assessment and lied still in employment? Mum clearly had high nutritional needs and there was no recovery from that. This nurse assessor said it was not her responsibility to fast track mum as she was acting as agent for yyyy PCT on the appeal.Whose responsibility was it ?

In the original assessment mum was refused CHC partly because the risk of falls assessment was lowered. However,She fell twice in the care home ( it was a new care home and she was the first resident so initially had one to one car but things for her deteriorated as the care home became fuller with less attention.) My mother left hospital with cataracts and it transpired that she was blind in one eye and little vision in the other.Given all the other problems her risk of falls was about as high as it could be but it was only because the care home was new and empty she did not fall more!

Having to engage in a ridiculous argument about not walking into walls to establish my mothers cognition score as high as opposed to severe was absolutely pathetic.My mothers MME was consistently below 10 and sometimes zero. If she had any genuine insight ( no) than we would argue that she was suicidal because she was willingly refusing food and eating insufficnt to sustain life. Whcih one is?

[Boudeca2007]

Sharina we are/were in a similar position. Mum had gangrene of the foot and the hospital would not operate because of her severe dementia. We got full funding for the last 5 months of her life but she had been in nursing homes since 2004 and had severe cognition disabilities / could not speak or communicate in any way. She was assessed for full funding in 2007 and was turned down. We have had 2 Independant Review Panel meetings [ which was just a tea and biscuits exercise for these NHS peeps ] and have contacted the health ombudsman who agreed with the SHA. We don't know where to turn apart from I have asked the Health Ombudsman to review their decision. The PCT Assessing Nurses do not seem to understand dementia never mind fronto temporal dementia which Mum had. We also has to witness her distressed state , flaying her arms around in pain [ we think ] because she could not speak/ cry or communicate who knows what hell she went through. It's very hard to get over and I'm finding it even harder now she has gone although the worry and pressure is now off I'm finding it hard to live a normal life after years of worrying about Mum.

We were also given the run around about who should be doing the ' fast track ' - no one seemes to know- each one saying it was the other's responsibility - what a farce !! In the end I just demanded to have her assessed using their Decison Support Tool and even though she scored 2 severes it still had to go to a ' panel ' meeting [ more tea and biscuits ].

All I can advise you with is keep appealing their decisions - you can still do this retrospectively.

[sharina]

I will keep appealing.

However, my mother suffered shock and I firmly believe that she should not have done so if she was under the care of a proper drawn up nursing plan.The nurse assessor said it was not the job of the CHC team to draw up the nursing plan even if CHC was awarded.

The point I am making is that my mother should have had CHC but was refused.They should have assessed all her needs and made sure they were met.They did not do so.As a consequence of their gross negligence my mother suffered shock and rectal bleeding.My mother should have been far better monitored and suffered unnecessary unpleasantness days before death.

I could argue res ipsa loquiter. There is a presumption that they were negligent because is she had been properly nursed and monitored she should not have suffered shock. In this case she was abandoned to unskilled care home staff.I am seriously contemplating a claim against the ... PCT for negligence in the small claims court asking for less than £5000.That way there are no costs involved and the nurse assessor would have to explain to a judge how she could have abandoned my mother in a care home without nursing with the recorded weight loss that she had.



Even her consultant at least expressed surprise at her extreme low weight when she died and said that at some point she must have developed a lack of appetite anorexia.He denied she had it at the hospital seven months before despite all the recorded problems with weight.Yet the nursing assessor said she only had moderate nutrtional needs four weeks before death .At what point did she develop this anorexia then? days before death...yeah sure. Clearly something is wrong here.Still they will all rewrite their way out of problems.

Everyone is passing the buck and interpreting facts to suit themselves. It is absolutely revolting.

Even the GP when he wrote in response to our complaint said "She was visited on the 18th June.."he then proceeds to say that on that date the use of other analgaesia was discussed. He was challenged because it was not true and said "I apologise I did not make it clear the visit on the 18th June was after your mother had died..!!!!!!!!!!!!!!!!!" The use of other analgaesia was discussed by phone.

Yet he was not reprimanded for this. Clearly his notes are terrible/unreliable because even he cannot determine if the person was visited/examined or the care home was merely phoned.Yet These are the notes used to determine CHC>

The best one (disingenuitiy)is we told the care home that my mother had historically liked all foods.The nurse assessor had said in her report "She likes all types of food." Historically she did and was recorded in her opening records at the care home as such.( despite a previous weight loss from 55 kgs 8 months beforehand.)The care home recognised her extreme eating difficulties and would present her with teeny tiny portions of food completely different to everyone elses.

My mothers diet in the last 6 months of life was a slitherof a see through thin slice of quice.Quarter sandwich with one bite removed,yoghurts,bananas,cereal.soup. The question of liking all foods did not come into it.COuld we get her to eat at all was more the case.She went from 49 kg to 42.5 kg. Heck of a difference from a hospital recorded weight of 51 kgs following weeks of not eating at home in August 2009 that the nurse assessor failed to mention in yet another disingenuous fashion. How much weight do you need to lose before they acknowledge you are dying from not eating/fraility. Unless they are told to look at keep weight charts from over a year period they will conveniently discount the weight loss from more than six months ago and give this truly fabricated picture.


The trouble is none of these cases go near a law court.None of these nurse assessors would survive in front of an independent judge. The system is wrong because the nurse assessor's job is to save money she is not independent and very bias.The panel is bias and the whole thing is like some Third World interpretation of fairness.In fact I would probably have better luck proving the truth in front of a South African court than an NHS panel.

[Boudeca2007]

Yes you probably would Sharina. It's a disgrace and I hope you get some satisfaction at some point in the near future. As far as I'm concerned My Mum died because of the vascular surgeon who would not amputate. I have complained to my MP and he is taking the complaint to the NHS. Sadly though I got a letter from him today which says that the ..........PCT!! are dealing with it. I've crossed swords many a time with these people before so I doubt they will be in any hurry to help me !! Mum's GP was not even going to record Gangrene on her death certificate so we had to have [very, very reluctanly] a post mortem [ for which I will feel ever guilty for ].

The Nurse assessors no matter how much they protest ARE there as gate keepers to NHS Full Funding. They move the goalposts , ignore the National Framework guidelines and sometimes downright lie to fit our relatives into the ' moderates ' niche. I swear when I read some of the tripe they wrote I wouldn't recognise that they were assessing my Mum !! One of the Nurses tried to convince me that ' there are different levels of high ' ! That's how stupid it's become. They also said she didn't have any out of range nutrional needs when the care home records note that she was losing weight, choking on her [ already pureed ] food and that her level of need was ' very high risk ' and to seek dietic advise. They never did ofcourse.

[sharina]

"It should be noted that this is not the only way that individuals can qualify for NHS continuing healthcare towards the end of their lives. The DST encourages practitioners to document deterioration (this could include both observed and likely deterioration) in a person’s condition to allow them to take this into account when determining eligibility using the DST. However, this should not be used as a means of circumventing use of the Fast Track Pathway Tool when individuals satisfy the criteria for its use. Where deterioration can be reasonably anticipated to take place before the next planned review, including where the individual is presently asymptomatic, this should also be taken into account in making a decision on eligibility."


I would love the Secretary of State to explain to me how this was implemented whilst my mother was dying? There is one priest in my mother's cathedral who has a parish of thousands.He came out less than three weeks before my mother died and gave her the last rites. He could see she was dying.....

[sharina]

Needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed

So please tell me Secretary of State for Health, Mr Lansley at what point does a person with dementia ceases to have this mere moderate need and is recognised as dying from not eating?

In my mother's case you have from the 17th May when your nurse assessor decided she did not qualify for CHC until the 18th June when she died.

On the 17th May my mothers recorded weight was below 43 KGS a significant drop from her recorded weight of 51 kgs . (August 1 year earlier) Obviously this was of little importance and of no serious concern to the nurse assessor who felt that a bit of spoon feeding and a little bit of additioanl time given would be all mum required.

In contrast the Consultant who looked after her some 6 months earlier will say " The fact that she died at such a low weight means that at some stage she must have developed anorexia" He was very surprised at her low death weight.

I ask the Secretary of State for Health this question. How could my mother have developed terminal anorexia in such a tiny period 17th May until the end of May when she was declared eating insufficient to sustain life?

Why was my mother not given CHC at this point when non essential meds were withdrawn?


If the CHC assesment could not ensure that the NHS provided nursing care for my mother as she was dying the assessment is not fit for purpose. It needs to be re written to recognise the symptoms of dying with dementia to ensure this never happens again.

If the assessment was not done properly someone is responsible but to date no one has been reprimanded.



I will always believe that someone did not do their job properly .My mother's blood pressure went down 80/60,she had shock and rectal bleeding a week before she died. On that day she was being looked after by a non qualified care assistant. There were no nurses in her care home during the entire days when she sustained this shock as it was not a nursing home. No one has explained this event to me and taken responsibility for this upset.

Why?????

[Boudeca2007]

My Mum's weight went down to 42 kgs and the PCT Nurse assesor still insisted she didn't have a nutrional problem.

I'm a bit concerned about why your Mother was not in a Nursing Home as opposed to a Residential one ? That , to me , is a disgrace as she clearly required Nursing care. Have you officially requested the PCT retrospectively review your Mother's right to NHS Full Funding ? also why she was put in a Residential Home instead of a Nursing Home ?

[sharina]

My mother was in a residential home because upon discharge from hospital we were advised that she did not need a nursing home but a care home with dementia.

However, the nurse who did the first assessment before my mother left hospital said "I hope she is going to a nursing home she is going to need it!"

It was hard to find a nursing home plus dementia. The care home said they could cope with her assessed needs. All the hospital doctors said a care home without nursing was absolutely fine.She needed non nursing dementia care!! Notes record us clearly challenging this...They were virtually chucking mum out of hospital as we did so.

Everyone in the process denied mum's eating issue. But according to the food charts,on the 16th October 2009 for the entire day she ate "2 pieces of toast, 2 ice creams and 1 sandwich ..refused pudding" On the 17th October she ate "2 pieces of tast and 1/4 faggotmash and veg ,1/4 apple pie" This was allegedly when her appetite was vastly improved and she was gaining weight! How much was she eating when she was losing weight!

It was said by the hospital swallow assessment 8 months before she died that " At best the patient has a swallow that is within normal limits but it seems for much of the time she is obviously confused and drowsy and needs to be fed.At these times she has difficulties in swallowing. Although there are no obvious physical problems her cognitive state is likely to affect her swallow safety with an element of dyspraxia which will lead to an uncorodinated swallow and aspiration risk especially when she is being fed." She could not generate " A normal swallow pattern if distracted and her swallow became uncoordinated"


However, whilst in hospital by miracle she gains weight on sodium valporate.(a drug hugely assoc with weight gain) Her creatine levels raise as well and she has a mysterious illness (query uti) so coincidentally on the day these blood results come in she is taken off sodium valporate.

On valporate her weight when to 49.5 .Before she leaves hospital she stops having the sodium valporate and guess what her weight begins its descent to 48.8. Noone flags this as a concern in the hospital.But she was admitted partly due to dehydration and not eating.The symptoms have begun again even before she leaves hospital. Noone tells usabout this weight loss.They denied us access to her hospital records before the first assessment as we had no authority. I only found out months later!

By February the care home is concerned because her weight is 44.25. She is started on mirtazapine as an attempt to reignite her eating and restore mood. By now weight is below 43 it goes up to 45 very briefly on this meds and then plunges to her death.


From the moment my mother entered the care home she was losing weight and for the last few days in hospital. Yet the care home manager said to the hospital SALT team mum was managing well ( She dropped .5 kgs in the first week at the home and was eating see through quiche and 1 quarter sandwich)

On the 17th May ( Bear in mind death on the 18th June) the nurse assessor said that "without strategies mum would become nutritionally at risk...but the care home manger on the 17/5 said mum was recovering and in her usual feeding pattern."

Where were the food charts / fluid charts during this assessment. I have not seen them. If there were none how come when nutrition was such an important issue..enough to warrant a psychiatrist visit.

Yet conversely, according to the GMC the CHC assessment in May included key feature of Mrs ...deterioration in particular her reluctance to eat which was the basis of the carers request for the GP's attendance on the 1/6 to discuss her end of life care.


Unbelievably this same care home manager on the 31st May told us mum was withdrawn and eating insufficiently to maintain life. Could he have our funeral arrangements.

This same care home manager told the PCT that the nurse assessor was at all times polite even though when she brought up the issue of nutrition and I left in tears she remarked "Is it something I said.." We had spent an hour discussing why she felt my mother was not cognitively severely impaired as she did not walk into walls or fiddle with electric points. It was upsetting and painful.

As the nurse assessor engaged in this ridiculous battle of semantics in what I believe was her determination not to award CHC ,I looked at my mother and saw a dying woman. I could not believe that the NHS put people through this.

This nurse assessor heard that my mother in her late eighties inserted her own finger into her anus for relief because she could not do a pooh and she did not even mention it in the assessment. I was shocked to hear this..it's not something you can even imagine happening.Surely the review panel had a right to know this.

The truth was my mother was in the wrong place. Why?? Everyone let her down and we trusted the medically qualified people to make the right decisions/ give us guidance.

[TinaT]

I wonder if you have read Jimbo's latest thread regarding the open letter to the government from over 20 Elderly Care Organisations? I think this is very pertinent to the problems you have tragically encountered.

I know the pain of having a parent die in very difficult circumstances and I only hope that as time goes by, the hurt will subside a little for you. It is indeed a horribly painful experience to have to go through.

xxTinaT

[sharina]

I will look that up.

My mother should have had the following:

1 A fluid chart.
2.Advice on diet eg use full fat milk not skimmed (can you believe it they made her tea with skimmed milk when every calorie was precious )
3 A food chart
4A stool chart
5 pulse taken when given digoxin given low weight/variable pulse and hypothyroidism.
6 A physical check on the state of her bowels as opposed to her inserting her own finger!!!!!!

This is why she needed nursing. This is what she did not get.

She had very caring carers who made a fuss but it was not nursing. She suffered shock . No one has stepped up to the plate and said sorry.

It's easy to say some one does not need nursing when they are dying because in truth the expected happens and they die so nothing seems to have gone wrong. Noone is expected to nurse them back to health so it does not matter if they are not nursed.

Mum was dying in any event so the attitude seems to be so what if she had shock. Before that she did not need tubes and pumps so therefore she did not need nursing.
However, she did need the above but it was not given.

[Boudeca2007]

I'm disgusted at the fact that your Mother clearly needed Nursing care [ and I'm not in any way medically trained !! ] and it was cruelly denied her. It is a sad fact that some care home managers will downplay the persons true nursing needs so they will continue to be on a ' self funding ' basis as the PCT do not pay as much when they fund the person.

I'm so sorry to hear your story at least my Mum was in a Nursing Home however we had to fight very hard for that back in 2004. She was still refused NHS Full Funding though and the Nursing Home notes leave much to be desired when it came to accurate record keeping. ie the Nurse would tell us 1 thing but the notes said another. This , I believe , went some way to explain the PCT's refusal to fully fund [ plus the PCT Nurses not taking what we said into account, in other words - Gate Keepers for CHC ] .

Have you requested copies of the care home records ?

[sharina]

I am in the process of requesting them. I am in a sticky situation in that my father was much pleased with the kindness shown by the care home staff. It is difficult to describe the weaknesses in the system without being critical of them and my father would be reluctant to do this. The care home owner and staff were compassionate and kind. The obvious thing would be to ask the care home why my mother had shock and take it from there.

The bottom line is that they knew that my dad did not want to move mum into hospital or an alien nursing home...we all did. I was caught between a rock and a hard place. But the point is that dad had a right to indicate a choice for mum's place to die and I fail to see why she did not have a daily visit thereafter from district nurse to check her pulse, blood pressure ,need for pain meds etc. There were 2 nurses at the care home .One was the manager (who was busy managing the home) and he was on a weeks holiday when my mother had the shock and the other one was on a days leave.

The care home manager who no longer works there said statements that were quite amazing about my mother's state.That partly caused the bizarre situation of mum allegedly eating her normal levels of food on the 17th May and eating insufficient to sustain life by the end of May. I have video footage between these dates exhibiting a lady refusing to eat, being scared of the spoon and us celebrating when we managed to get her to eat a farleys rusk dissolved in milk (My idea because she was taking cereal out and inspecting it like a foreign matter.)

The fact it was my idea indicates that to nurse is more than mere tubes and charts. In this case it's thinking how can we get calories in. I am sure a nursing qualification is made up of quite a lot of practical thought and problem solving. This is what is wrong about the definition of nursing care according to the nurse assessor. The point is as a relatively highly educated person I took the view that every mouthful of food counted whilst the carers gave my mother cereal with semi skimmed milk!!!!!!!!!!!

[Boudeca2007]

Have you discussed your concerns with the Care Homes GP? I would also advise you to contact the CQC [ Care Quality Commision ] as well but my experience of this organisation wasn't very positive BUT they did finally redress their mistake. I had to be persistent nearly to the point of being obsessive !! However the CQC do [ or should ] act upon complaints and they can investigate if proper records were being taken at the home etc.

I'm afraid to say that with all these professionals you have to develop a thick skin as they can sometimes act in a most uncompassionate way. It's damm hard when you are dealing with a very ill or deceased relative.

Just a word of advice re the care home records. You should not have to pay more than £50 for the copies.

You can also request copies of GP records - again you should not be asked to pay more than £50. Ditto Hospital records as well.

[sharina]

I have received a bland e mail from the Secretary of State for Health's Department. In essence they are not at all concerned that a lady was refused nusing care on the 17th May and suffered shock on the 9th June before dying on the 18th June. I was given the usual standard response to complain to the PCT.

I guess from this response that this sort of thing must be "run of the mill" with hundreds and thousands of people dying within a month of being refused nursing care.

No one is at fault because mum was dying anyway so I guess did not need nursing care. OK it was not quite right and she did have a bleeding backside and shock a week before she died but the end result was the same so no harm done hey,Mr Lansley.

It's a good way to make huge budget savings.Let's deny dying people nursing care. Genius.

[Boudeca2007]

Sharina yes I have also the usual blurb from the MP even before the con lib lot. I seem to remember one sentence that stood out something like - we are very grateful for the contribution the elderly have made towards their care - !! sadly the contribution my late Mum made was everything she owned and had worked full time all her life for [ as did my late Dad, he was a steel worker ]. So it's not the money - believe me it's not about the money - its about the hard physical graft that the elderly have gone through and gone without to scrimp and scrape their way just to be able to own their own home.

I have mountains of paperwork from the Ombudsman / MP's / PCT's / SHA's / etc etc. But none of them address the fundemental point that my Mum should have been fully funded by the NHS.We go round and round in circles constantly being pushed from PCT assessments to SHA Independant Review Panels to the Health Ombudsman then back to PCT re assessments blah blah. And this has been going on from 2007 . Throughout all the assessments one constant was that her cognition level was assessed as SEVERE the SHA have down graded other needs even though they had never met my late Mum.