NHS Continuing Healthcare Appeal

[JanD]

Thank you mowood

Section 8.7 b) 'Where an individual requests copies of the documentation to be used this should be supplied.

Once again mowood thanks again for your very valuable advice.. I have emailed the PCT quoting this section of the NHS CHC Practice Guidance - I do not anticipate I will get what I ask for but I am very interested to hear their reply...

Any thank you for your pm also..

 

[JanD]

I'm losing my mind!!!

Well I have their reply... thanks for trying mowood but you will not believe the reply.. here it is...

The documentation mentioned is referring to the Decision Support Tool which I have attached for your information.

To that end.. they have enclosed a BLANK copy of the Decision Support Tool that WILL be completed at the MDT meeting...

Go Figure..

 

[jenniferpa]

Oh for crying out loud...

words fail me.

 

[sleepless]

Jan, I don't know where you get the stamina for all this -- can I wish you well?
best wishes,
sleepless

 

[Marianne]

Jan I first became aware of CHC funding after watching a Panorama programme on the subject in 2006. Following the programme I sent off my letter to the PCT requesting an assessment for my dad who had been in care 15 months and had never had an assessment during all this time. After sending off my letter to the PCT I called at the home and told the manager about the programme and how I had applied to the PCT for an assessment, she immediately said "you won't get it, your dad is well managed here". The meeting took place, the care home manager was present invited by the PCT along with SS, CPN and me.. it was a disaster in fact I was left wondering at the end of the meeting why my dad was in care he wasn't ill he just couldn't remember things in other words it was down to his age. They never mentioned at this meeting that my dad was also suffering from Ca.Prostate which was diagnosed 15months earlier while in hospital, I couldn't remind them because nobody had told me.

Following this meeting I had words with the manager of the home mainly wanting to know why she had told lies, she lost the plot, she was still holding my dad's file which she threw at me telling me they belonged to me, this was the first I had heard of this.

I had to keep CHC on the back burner simmering because my dad started to be abused, I visited the home one morning soon after the meeting and found my dad's doorway blocked with furniture, after I moved the blockage I found him severely bruised, soaking wet and shivering. This home was a 3star home I was so upset, I rang anyone and everyone but I was shocked at the laid back attitude of all the agencies, it took POVA 6 days to visit the home.

To cut this story short, I moved my dad to another home following a short stay in hospital, this was his third home, he died 10 days later. Three months later I applied for a retrospective review for the two and a half years my dad had been in care self funding. The PCT allocated me my very own nurse assessor who was super, she supplied me with copies of all medical records, care home notes, MAR charts, I had already bought a copy of GP notes, so I began to put together my own case. I decided to start with medication and realised very quickly there was no mention in GP notes or MAR charts of Haloperidol and yet he was given this antipsychotic on a regular basis. My case went to panel and I was awarded every penny plus interest.

I then took up the drug abuse, the PCT said they would do an investigation but decided not to bother because my dad was dead and no further harm could come to him (their words) so I went to the police but when the PCT became aware I had involved the police they sent their own policeman to visit me and sacked "my policeman". Their policeman was sent to harrass and intimidate and generally scare me off. A couple of weeks later I visited my GP who knew me well I had worked for him before my dad had taken ill, he told me the PCT Director had been on to him asking questions about me, I told him the story, he was appalled and told me to tell everyone and name names even though the PCT director was his boss.

I wrote to the PCT asking if there was anything they needed to know about me, if so then they only need to ask. I copied this letter to every PCT board member, MP, I received another visit from the policeman to my home my hubby was home this time so he threw him out.

A few weeks later I received a letter from my GP asking if I would call in to see him. when I called in his tune had changed, a patient had made a complaint about him and he needed the PCT Director to fight his corner so he asked me to give him permission to tell her I would drop my case against her I refused, so he refused to treat me. I have since had to give up fighting for justice simply to get myself well.

Jan Do take time out to relax as much as possible.

Regards
Marianne

 

[JanD]

Marianne

I am totally shocked and stunned...!!!

How these people define themselves as 'care' givers is beyond me.. I knew this battle would be hard but I never realised I would meet so many ignorant, manipulative and belligerent people.. I will now add to the list 'dangerous' and 'untrustworthy'(to say the least!!)

I am so sorry to hear of your plight and only wish I could help. To think there are possibly thousands of people in the same situation we find ourselves in... it really beggars belief..

Thanks for your posting.. this is such an exhausting struggle, every now and then I need reminding that all we are fighting for is a basic human right.. and as you say JUSTICE...!

Jan xx

 

[mowood]

Marianne

I'm so sorry to hear what you've been through. People who've not had dealings with PCT/SS regarding NHS Continuing Care funding will, I'm sure, find it hard to believe that this sort of thing goes on.

Having had first hand experience of so called 'nurses' and 'health professionals' who manipulate and misconstrue and tell downright lies, I have every sympathy with you. I hope you are regaining your health.

Jan, you're just starting out on this road and have already come up against deliberately placed obstacles. I hope you can get over them and have the strength to continue the battle that will undoubtedly ensue.

Best wishes

 

[susiesue]

Oh my goodness - this is just awful Jan and Marianne! it sounds more like a horror story than and NHS CH appeal.

I am just at the start of this process as David has been declined and I am actually just waiting for a no win no fee firm of Solicitors to let me know whether they will support me and take on David's case. Having read your posts I really hope they do as I just cannot believe what you two have been through - it is just disgusting the way you have been treated.

I am shocked!!

 

[lynda2244]

Re Continuing Health Care

Hi Jan, sorry to hear about Bridget, you as a family have every right if you disagree with the Decision Support Tool to have a meeting and say that you feel that their decision is wrong. By what you have said from severe, high your mother in law would definetly qualify as a Primary Health Need not a Primary Need because she needs 24/7 nursing care, let me know if you need any further help, take care for now, Lynda xxx

I wonder if anyone can give me advice on the appeal process for NHS Continuing Healthcare - I have read the National Framework and supporting documents but I am still some what confused by the whole process. I will attempt to explain below our concerns but please bear with me as I've a feeling this will be a bit long winded!

My Mother-in-Law (MIL), Bridget, is in the late stages of vascular dementia and is in a care home since being discharged from hospital recently. She has been assessed for her eligibility for fully funded NHS Continuing Healthcare and this has been refused. We have written to the Commissioning Team informing them that we do not agree with the "Commissioning Team's decision that Bridget's assessed level of needs do not demonstrate eligibility for fully funded NHS Continuing Healthcare". They have previously sent us their checklist that was used in the assessment and on the 11 Domains she was graded as SEVERE in Cognition, HIGH in Mobility, they have said that a HIGH in Communication is not evidenced but so I presume they've graded this as MODERATE but this is not clear from the checklist. She is a MODERATE in Nutrition, Continence and Skin/Tissue Viability and a LOW need in Drug Therapies/Medication - they have stated that she has NO NEEDS in Behaviour, Psychological & Emotional, Breathing and Altered State of Conciousness (ASC).

We disagree with the gradings and have written to tell them this. For simplicity we downloaded the checklist and used this to evidence our assessed level of need in each domain - we gave examples of why we graded mum as follows :

BEHAVIOUR - HIGH - She sometimes has callenging behaviour that poses a predictable risk to self or others as she can be aggressive and lash out (physically and verbally) - She refuses to take medication - She can refuse to eat or drink - She lacks insight into her behaviour and doesn't understand the consequences of her actions.
COGNITION - SEVERE- We agree with this! (It's about the only thing we do agree on!)
PSYCHOLOGICAL - HIGH- Because of her VD she is unable to engage in any care planning, support or gain her interest in daily activities - She can have long periods of confusion, her contact with reality is distorted, she sees and hears things that are not there and speaks to people who aren't there! She has no awareness of her surroundings and cannot remember most things all of the time. She is on anti-depressants and is under the care of psychiatrists (well she was when she was at home but since she went into hospital we don't appear to have seen a psychiatrist!)
COMMUNICATION - HIGH- She is unable to make decisions or follow instructions, she can speak but she's not normally speaking about the same things that we are! On occasion she states that her Mum and Dad who have been dead for 40yrs have been to see her! She can respond to prompting for things toileting/eating but her responses cannot be relied upon.
MOBILITY - HIGH- We agree on this level
NUTRITION - HIGH- Back in January 10 the hospital said that she needed a PEG feed or she would not survive... we said no but she's still here! The have said that she would need to go into a home that can administer Subcutaneous Fluids - she was on a drip but they took her off it in hospital and she is no longer on Sub Cuts in the home that she is in - She can and does refuse to eat or drink and will sometimes say she's finished eating when she hasn't had anything at all. The hospital state in their decision that she has but on weight (over the week they were referring to) but prior to being in hospital she went from a size 14 to a size 8 in a matter of months - She would only eat in hospital with assistance and miraculously prior to discharge (and assessment) they were giving her that assistance.
CONTINENCE - HIGH- Without intervention Bridget is doubly incontinent - She has to be prompted to use the toilet (then not always successfully) - She was totally incontinent in hospital until toilet habits started to be re-established by intervention of hospital staff in preparation for discharge (and assessment - Call me cynical!)
SKIN INTEGRITY - MODERATE- Level of need agreed
BREATHING - LOW- Bridget can be short of breath after walking short distances - She had a heart valve op in 2006.
DRUG THERAPIES - MODERATE- Bridget cannot take her medication unaided and can refuse to take it at all - she ordinarily spits the tablet out or refuses to swallow - She was prescribed Haloperidol in hospital due to difficult behaviour and in hosp they gave her anti-depressant in liquid form as she was difficult.
ASC - HIGH (at least)- Bridget's contact with reality is distorted - she can have delusions or hallucinations and has very little understanding of reality - she often has conversations with people who are not there!

Thanks for bearing with me... now to the confusing bit...

The Customer Service Manager has written back to us regarding our letter appealing their decision and they have stated that there are several options open to us now, I'm not sure what they all are but here's my understanding... we can either go through Local Dispute Resolution Process (which again doesn't look too easy) or direct our comments through the Complaints procedure - In the documentation they sent back it states that "a request for a review is NOT appropriate" if we wish to challenge "The content of the eligibility criteria" - Now am I reading this wrong, it's the eligibility criteria or their so called grading of this criteria that's in issue is it not - They have said that rather than a review our issues should be dealt with through NHS Manchester's complaints procedure. I need to respond to their communication soon and I'm at a loss... do I:

a) Go through the complaints procedure
b) Go through Local Resolution
or
c)..... I'm hoping that option c will come from your responses. Can I skip Local Resolution and go to the Strategic Health Authority for an Independent Review (I think this is only possible if the Authority decides it's possible but am not sure about this) or is it advisable to go through option b first...

Any advice you give me will be gratefully received.. I'm drowning in a sea of paperwork, national frameworks, guidelines and emails (there are 10 siblings in Bridget's family and discussing and explaining this will all of them is not easy).

I sometimes think I know what I'm talking about and then I think again and am totally confused!! Please help...

 

[jenniferpa]

Hi lynda and welcome to Talking Point.

I just wanted to mention that this is quite an old thread - I don't believe that JanD, the poster of this thread has been back to the forum since last year.

Incidentally, for anyone who finds themselves in this position can I recommend Alzheimer's Society Volunteer group who help people who have been refused CC? http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=398

There is also a fact sheet about NHS CC http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=399

 

[maddy46]

continuing health care

Jan I first became aware of CHC funding after watching a Panorama programme on the subject in 2006. Following the programme I sent off my letter to the PCT requesting an assessment for my dad who had been in care 15 months and had never had an assessment during all this time. After sending off my letter to the PCT I called at the home and told the manager about the programme and how I had applied to the PCT for an assessment, she immediately said "you won't get it, your dad is well managed here". The meeting took place, the care home manager was present invited by the PCT along with SS, CPN and me.. it was a disaster in fact I was left wondering at the end of the meeting why my dad was in care he wasn't ill he just couldn't remember things in other words it was down to his age. They never mentioned at this meeting that my dad was also suffering from Ca.Prostate which was diagnosed 15months earlier while in hospital, I couldn't remind them because nobody had told me.


Following this meeting I had words with the manager of the home mainly wanting to know why she had told lies, she lost the plot, she was still holding my dad's file which she threw at me telling me they belonged to me, this was the first I had heard of this.

I had to keep CHC on the back burner simmering because my dad started to be abused, I visited the home one morning soon after the meeting and found my dad's doorway blocked with furniture, after I moved the blockage I found him severely bruised, soaking wet and shivering. This home was a 3star home I was so upset, I rang anyone and everyone but I was shocked at the laid back attitude of all the agencies, it took POVA 6 days to visit the home.

To cut this story short, I moved my dad to another home following a short stay in hospital, this was his third home, he died 10 days later. Three months later I applied for a retrospective review for the two and a half years my dad had been in care self funding. The PCT allocated me my very own nurse assessor who was super, she supplied me with copies of all medical records, care home notes, MAR charts, I had already bought a copy of GP notes, so I began to put together my own case. I decided to start with medication and realised very quickly there was no mention in GP notes or MAR charts of Haloperidol and yet he was given this antipsychotic on a regular basis. My case went to panel and I was awarded every penny plus interest.

I then took up the drug abuse, the PCT said they would do an investigation but decided not to bother because my dad was dead and no further harm could come to him (their words) so I went to the police but when the PCT became aware I had involved the police they sent their own policeman to visit me and sacked "my policeman". Their policeman was sent to harrass and intimidate and generally scare me off. A couple of weeks later I visited my GP who knew me well I had worked for him before my dad had taken ill, he told me the PCT Director had been on to him asking questions about me, I told him the story, he was appalled and told me to tell everyone and name names even though the PCT director was his boss.

I wrote to the PCT asking if there was anything they needed to know about me, if so then they only need to ask. I copied this letter to every PCT board member, MP, I received another visit from the policeman to my home my hubby was home this time so he threw him out.

A few weeks later I received a letter from my GP asking if I would call in to see him. when I called in his tune had changed, a patient had made a complaint about him and he needed the PCT Director to fight his corner so he asked me to give him permission to tell her I would drop my case against her I refused, so he refused to treat me. I have since had to give up fighting for justice simply to get myself well.

Jan Do take time out to relax as much as possible.

Regards
Marianne

Unbelievable Marrianne
This has mad me cry so much I cant believe this can happen in England when our Fathers fought to save this country and this is the help we get. People who spend all their money get help, others who go without and save for their old age are penalised. I was always told you either have to be realy wealthy or have nothing at all

I do hope you get well soon and how spinless that so called Doctor is

sending you hugs xx
maddy

 

[JanD]

Small Update

I haven't posted on the forum for a long time but I thought I'd give a small update.

Sadly, my MIL Bridget, died on 28/12/2011 - we never did qualify for NHS Continuing Health Care despite many assessments... the nursing home she was residing in finally managed to dehydrate her and ignored it and she finally ended up in hospital.. after the family insisted she see a doctor - she had diarrhea and was quite drowsy and had been in bed for a few days - the Nursing Home said she had a chest infection but the the Hospital confirmed dehydration.

She spent a week or so in hospital (only being hydrated with a drip as she'd stopped eating again) and she spent most of her time there with her eyes closed lying still... the hospital didn't really do much to help her eat.. and then they discharged her back to the home... When she arrived back in the home, much to our surprise, they removed her catheter straight away and sat her in the lounge - She also had a very bad case of diarrhea, which we were obviously very concerned about - The nursing home wasn't - When we questioned how they knew her fluid intake and output they just said she was taking on fluids... after about 4 days we insisted that a doctor see her again - he took one look and sent her back to hospital where the family spent ages thickening drinks and trying to encourage her to take it from a spoon (the hospital thought she had a swallowing problem - the care home didn't think this and was of the opinion she didn't even need assistance with her feeding prior to her admittance to hospital!). She spent about a month in hospital being prodded and poked, there wasn't much they could do for her they said - peg or nasal gastic feed no good.. the drip made her swell...
Just for good measure the hospital informed us she had scabies which they said that she'd caught from the home, the home denied this... despite this, she was moved to a ward (from a side room) - she was on the ward for about 2-3 days when she took a turn for the worse and the hospital called us in... unfortunately she couldn't be transferred back to a side ward as the hosp didn't have one, so she spent her last hours on a main ward with the curtain pulled - not very dignified... Eventually she passed away peacefully (we think) on 28/11/2011 with her family around her..

I'm sorry if I sound disheartened by all of the contact that Bridget had with the professionals but if I'm honest, not one of them cared! She was merely a money making machine for the 'Excellent' graded nursing home she spent the last few years of her life in and a 'bed blocker' in her final days at the Hospital (more than once they tried to discharge her back to the nursing home)..

I truly hope that others do not have the experience we have had - she may have been just another 80yr old with dementia to the 'Caring Profession' but she was our Mam and we loved her..!!

 

[jan.s]

Dear Jan
Such a sad story. I am so sorry to read about your loss.

Jan

 

[turbo]

Hello Jan, I am sorry to read your sad news about your mum. My sincere condolences.



turbo

 

[beech mount]

Jan, sorry for what you and your MIL had to go through as far as i am concerned this is every bit as bad as the recent Panorama program. We must remember that "Care homes" are mainly run for profit.
John.

 

[Marianne]

Jan so very sorry to hear your sad news.

As Beech Mount says these homes are run for profit, my dad paid two and a half thousand pounds per month for a residential placement until he was granted CHC funding 10 days before he died. Any nursing he required was carried out by district nurses and diabetic nurses etc. more often than not when I rang the nurses. For his £2.5 thousand pounds he was allowed 60p per day food allowance which I reckon to be less than £17 per month, I think the manager told me the food budget as she felt embarrassed that I was taking my dad food into the home, I was speechless but I wrote to the owner of the home and asked him what he was planning to have for his tea and how much did it cost and did he think his family could live on 60p per day.