NHS Continuing Healthcare Appeal

[JanD]

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...

 

[Winnie Kjaer]

Hello Jan,
I cannot answer your question but I am sure some one can, if not try the Alz. Soc. who have an appeal help line.
To be honest I don't even know what happens if you go through local resolution, do you know this yourself?
Who did your assessment? Did you have an input from the complete team? i.e. CPN, consultant, hospital and abybody else who have been in contact with your MIl, they all have to have their input.

What I wanted to say is that I too have just started the application for my husband. When the AS came to see me last week and we did the initial assessment together after I had prepared the groundwork, she explained to me that the scoring had now changed slightly (I have already done one successful apllication for my mother back in July). You can now no longer double score, but have to choose one as the main dormain for the high score.
The balance can be severe or less. I have to confess I don't understand how this is the case, but she was adament about this.
I believe you have to have one high and at least 2 severe to qualify.

My husband is at a very similar stage to how your explanation of your MIL, even though he is never aggressive.
His cannot communicate at all as he mostly has very little or no speach, even though he will speak impulsively occassionally.
He is totally immobile and is paralysed completely on his left side and the right side does not accept instructions from the brain at all, so he has to have everything done for him at all times.

Our SW is fairly confident the apllication will be granted and it was also she who managed to get the application accepted for my late mother, who unfortunately only benefitted for 5 weeks before she died.

I wish you luck with your appeal which ever way you decide to go.

 

[Winnie Kjaer]

Hello again,
Have you seen Sandy's reply on Homemakers thread?

Make be useful to you.

Take care

 

[BeckyJan]

Hello
I have been through the Appeal procedure but maybe through a different approach (all cases seem so very different in different areas).

The original application went through and I received no response. On chasing I was told the application was not supporting CC - although I had been told it did. I appealed by getting the office of the Head of CC for this area - sent my full letter with reasons - she arranged an independent review! The two nurses were superb and it went through well. Having said that I had the support of the NH Manager and all their records which more than proved the case.

Its always hard looking at another case - but from what you say I think I would be phoning the Strategic Health Authority office, speak to someone dealing with CC and ask their opinion of how it should be dealt with. You will need a lot of evidence to support your case. EG with my husband I had evidence of falls, weight loss over 3 months, inreliable decision making, poor skin and numerous UTIs and chest infections, plus the carers reports on his behaviour at night.

I also think it advisable to get in touch with the Alz.Society Volunteer Group who were wonderful with me. (Sandy has given the link on many CC threads).

Good luck. It is not easy.

 

[JanD]

Have you seen Sandy's reply on Homemakers thread?

Not yet but I will go and read it now... thanks Winnie..

To be honest I don't even know what happens if you go through local resolution, do you know this yourself?

As I understand it, firstly a face to face meeting between a representative from the PCT Continuing Healthcare Commissioning Team. The meeting should include a panel member and the facilitator of the patient's Continuing Healthcare Multi-disciplinary Team (MDT) meeting. The first meeting should seek to clarify specific issues raised... The PCT should provide the individual with a written outcome report which addresses their specific dispute issues... Eventually if you are not happy with the first meeting you can request a neighbouring PCT to review the case... If you are still not happy then you can request a Strategic Health Authority Independent Review...

However my confusion starts with the fact that the documentation says:

When a request for a Review is not appropriate
The review procedure does not apply where individuals or their families wish to challenge:
.The content of the eligibility criteria

The fact that I don't think that they have assessed the level of needs in each domain correctly surely means that I wish to challenge the content of the eligibility criteria... the documentation seems to suggest that I should be following the complaint's procedure which I'm sure will get me no nearer to challenging the decision to provide fully funded Healthcare... or is this the plan?

As my MIL was still in hospital at the time of the original MDT meeting, the people who attended were:

Senior Case Manager, Funded Care
Lead Case Manager, Funded Care - Observing
Administrator, Funded Care
Social Worker
Senior Specialist Physiotherapist
Staff Nurse
Student Nurse x 2 - Observing
Bridget's Son
Bridget's Daughter
Doctors assessment - The Doctor was not in attendance at the meeting and so Senior Case Manager read out her assessment.
Nursing needs assessment - The Nursing needs assessment was read by the staff nurse

I wish you well with your application, you seem to have a decent SW - I don't think Bridget ever even met the SW - he was a hospital social worker and in my opinion wasn't very interested..

Jan x

 

[Winnie Kjaer]

Thanks Jan, interesting, it really is like double dutch some times, I am afraid I cannot help you any further.

I hope you can get some good advise from others. I am sure the Alz. helpline can help you.

Take care

 

[jenniferpa]

Is it possible that "content of the eligibility" etc is referring not to the the degree of severity but to the areas that they assess? That is, it's not appropriate to request a review if you feel they should also be considering something not covered by the domains? Just a guess though.

 

[JanD]

Thanks for your comments everyone - I have contacted the continuing care Volunteer Network (campaigns@alzheimers.org.uk) on the best way to proceed.

Is it possible that "content of the eligibility" etc is referring not to the the degree of severity but to the areas that they assess?

This is still a bit of a quandry but I have received advice that says... "There is a difference between challenging the eligibility criteria (which have been set out in national guidance) compared to challenging assessments of need that have been made in the different domains set out"... So I presume that that is what I'm actually doing as I don't agree with the assessors level of need in the different domains...

For those that are in a similar position as me, I'll keep you updated....

 

[JPG1]

Jan,

Yes, you're right - what you are doing is saying that the assessors have made an incorrect assessment of the needs.

You aren't challenging the content of the eligibility criteria - you are challenging the 'way in which the eligibility criteria' have been applied and assessed.

In other words, all you are appealing against is the way in which the PCT has made its decision, based on the information they looked at.

Put your version forward, with reasons why the PCT got it wrong.

Good luck.

Edited to add: I forgot to mention that you can't go to the SHA until and unless you have exhausted all local dispute resolution procedures, unless there is a need for fast-tracking.
National Framework para 151: "There are two stages involved in dealing with any requests for a review:
a) a local review process at PCT level; and
b) a request to the SHA, which may then refer the matter to an independent review panel.

para 153: " Once local procedures have been exhausted, the case should be referred to the SHA’s independent review panel (IRP) (details in Annex E), which will consider the case and make a recommendation to the PCT. If using local processes would cause undue delay, the SHA has the discretion to agree that the matter should proceed direct to an IRP, without completion of the local process."

 

[JanD]

Quick update

I have contacted the continuing care Volunteer Network - What lovely people they are.. they have explained the process to me and give me lots of information on the kind of 'evidence' I need to start gathering for the appeal.. for example - my MIL is doubly incontinent, risk of UTI's? Is she at risk of TIA's due to her Dementia (I would say yes but this is yet another thing that the professionals have not yet uttered a word on yet!). Following on from our conversation I have realised that NHS Manchester haven't even sent us a full copy of the Decision Support Tool that they used for assessment so that's my first port of call...

Anyway I'm now trying to collate as much info as possible.. I'll keep you posted with how successful I am...

 

[InNeedofCare]

Sharing local inconsistencies on DST classifications

Hi all,

My grandmother has severe vascular dementia which results in severe cognitive impairment, and disorientation in time, place and occasionally in person. She also has nursing needs and mobility needs which have a complex relationship with her other needs, such as her incontinence. Her behaviour includes high level self-neglect and agression and violence towards others. In Dec 2009 asked my local PCT to conduct a retrospective review of my grandmothers entitlement to CHC funding. So far, we have encountered some shockingly unprofessional and close minded individuals who very quickly leapt to the conclusion that she was ineligible. This resulted in an appeal, for which I prepared a detailed written reps statement, which was considered on 12th april 2010. Our claim for a higher classification in mobility was upheld, but she is still not entitled to funding.

I have created a website to document our battle against our local PCT. I am updating the website on a regular basis.

There are hundreds, if not thousands of cases considered each year, and I am trying to establish a database on the website so that the public can understand the inconsistencies between each PCT and use this to help challenge decisions on the grounds of inconsistency. I would be very interested to hear about some of the cases being discussed, so that I could potentially publish the details to my website.

Thanks

Jamie Whitehouse

 

[sharina]

sharina

I give up.My mother is undergoing a review of a negative chc decision.She scored a severe for cognition on the original decision.Her MME score is zero.The nurse assessor today said it was irrelevant as she could get to the en suite in her care home and did not walk into walls.I said she would put her hand into a fire.She has put her hand into a hot toaster.She has trapped her hand in the car.The nurse said that her cognitive function was not severe as she can be steered into safety.She can respond to a command.I said but she has confusion .If she was in a road and a car approached her she would not understand a command to get out of the way.The nurse said she had to be in a secure environment hence being in a with dementia home.She was therefore unlikely to be in danger.I said well what can she do to demonstrate cognition.She said she does not walk into walls.She know it would hurt!She makes her way to her en suite and recognises the need for the toilet even if she is predominantly in pads.She then said that mum was not at high risk of falls because she could not self mobilise due to a decline in the last two weeks.I said well how do you know she can still find the toilet !Sge can't find her room in the care home!

She said they assessed things with the care in place they could not assess her without the care in place.They therefore put her behaviour as moderate even though she has scratched her legs,banged her head possibly hit my five year old son and kicked my ankle.She continues to bang the furniture in the care home.

I said you have to think what would happen if she was in this secure environment.She said I was wrong.

Any help!

 

[BeckyJan]

Maybe you have to plead that 'a managed need is still a need'! If she were not managed so well would she be in extreme danger - from your comments I suggest she would.

Have you proof of the 'well managed' part of her care?

However, if she is predictable and not at risk then that will go against your case. It is very difficult to give clear advice when all the facts are not known.

On the CC Checklist just 1 severe for Cognition is not likely to give a high enough score. Has she other health issues eg. condition of skin, record of TIAs, breathlessness, weight loss?

Have you downloaded the Checklist and Decision Making Tool - these will help you to understand the domains covered for CC.

Good luck

 

[sharina]

chc

Yes

She has heart failure and is on 9 drugs including digoxin.She got moderate for drugs

Her start weight was 51 kg and is now 43Kg's.She is on clogen as well as fortisips. She does not eat much at all.She got high for nitrition

She gets agitated and got high for this.

She has fallen 3 times in 8 months,has variable blood pressure,a cataract affecting her vision is on an anti depressant with high falls risk ,diuretic but got low for mobility because the care home own risk assessment had her as moderate risk even though she has fallen ther twice.

 

[sharina]

Sharina

Sorry I pressed the wrong button... to continue


She got low for breathing although she is in New York Class 2 because she can still go in a wheel chair if she has to go outside the care home.


She got moderate continence care.She is inceasingly in pads and had faecal incontinence three times a week and has overflow and faecal impact.Its not high because the care home just use movicol to shift the pooh.Th assessor said they should moniter her bowels more.

She has had a sroke and known history of TIA's since she has come into the home her mouth has drooped more and I suspect she has had another minor stroke.However, there is no evidence of care home intervention.

SHe got low for skin because she has no pressure sores.She has in the past had odoema.She has to have her skin creamed each day but the assesor said that is not nursing to just look for red marks.


We were awarded nursing contribution but we are in a care home with dementia so that does not apply.They made the point that the manager who happens to be a nurse is sometimes acting like a nurse.

 

[BeckyJan]

Sharina:

Firstly I see this is taking over JanD's thread but I am sure she will not object. However it may be a good idea to start a new one if you want more responses.

It is obvious you need to appeal!! Is it a SW doing the assessment ?? Tell her you are appealing and find out the name of the head of your PCT Cont.Care office. Our NH Manager gave me the local telephone number from whom I found out the County office number - they gave me the full address and contact.

I wrote an A4 letter explaining where my husband came in the Checklist and also on the Decision Making Tool. Once that was done, apart from swotting up the National Framework, everything else was relatively easy. Well the CC Peer Group that did the final assessment were great and very helpful. I also had support from the Nursing Home.

Please get copies of everything that may be relevant. Any reports from the MH Consultant, GP. The Home should have documentation which should evidence falls, incontinence, etc.

Please remember that you can contact the Alz. Society Volunteer Group - they are excellent. This extract is taken from their page on the Alz. Society website:

How to get in touch with the group
If you are challenging a continuing care decision and would like to be put in touch with the network please email campaigns@alzheimers.org.uk or call Alzheimer's Society dementia helpline on 0845 300 0336. Please provide the following information:
Your name
• Your email address
• Your telephone number - landline is preferable
• The name of the Primary Care Trust where you have been refused NHS continuing healthcare
• Whether the person is in their own home or in a care home setting

Good luck

 

[susiesue]

OMG this sounds like such nightmare!!

I have just applied for David and understand they will be assessing him first week of June.

I am under no illusion that he will be accepted for full funding but he doesn't sound nearly as bad as some of the posts on here.

I wonder if I am wasting my time and am going to get very stressed out yet again while they put us through the mill - or maybe that's what they hope

Good luck Jan (and anyone else applying) - I shall watch this space!

Love

 

[Marianne]

Jan
Request in writing a full MDTCHC assessment through the PCT, I would hand deliver your request or send your letter by recorded delivery as it has been known these requests in the past have got lost in the post. While this is being processed avoid discussing or signing anything with Social Services or discussing your relatives healthneeds as Social Services are not qualified to discuss health needs, they can only discuss Social Care.

In the meantime collect copies of GP notes, hospital records and carry out your own assessment using the DST, Waterlow chart which is attached below. I have sent you a PM with further information.

www.london.nhs.uk/webfiles/FOI/October 2009 disclog/L366 Attachment 03.pdf

http://www.judy-waterlow.co.uk/index.htm

www.shieldsgazette.com
Good Luck
Marianne

 

[JanD]

Still at it..

Thanks everyone for your replies and advice.. I don't mind my thread being a little bit hijacked by others as we are all so exasperated largely about the same things..

Just a little update..

we still haven't formally appealed.. the 3 month review (which it states in the National Framework should be done 3 months after the first) was due around the 1st of June. On the 5th of June, my mother in law fell at the nursing home (no body saw what happened!) and fractured the neck of her femur resulting in a partial hip replacement, it seems that events conspire against us! The Hospital said that she was lucky as the kind of operation she was having meant that she could weight bear within 24hrs of the operation, which would help to lessen other problems associated with not being mobile, i.e. DVT, pulmonary embolisms, UTI's etc etc etc.. however she was discharged back to the nursing home after about a week without the hospital mobilising her at all, she has not seen a pysiotherapist, in fact I don't think she has stood up on her own two feet since. My husband asked the nursing home if they were getting her out of the chair but they seem to be of the opinion that she's 'safer' there as in their experience, if she falls and breaks the other hip it could be 'game over'!

Anyway, As the 3 month review was overdue, I have been contacting NHS Manchester with a view to getting the 3 month review done.. What a palaver...! I emailed person 'A' asking what was happening she told me the paperwork was with person 'B' so a review wasn't being done and any problems I should contact person 'C' - I emailed person 'B'asking about the review and she said that I should be contacting the funded care team i.e. person'A' - I then sent a careful RANT to person A, B and C telling them how useless I thought they was.. I got a reply from person B telling me about commissioning and provider functions, a reply from person A telling me this has been passed to person D! to deal with as she is now the senior case manager and a reply from person C apologising to me if I feel like i've been passed around and also stating:

"The confusion over who should be dealing with your case appears to have arisen from a misunderstanding about whether this case is a decision review, ie you are questioning the outcome of the CHC decision and wish to have it reexamined, or a restitution case, ie that the case was being looked at in retrospect. We here at Commissioning are in agreement with you that we do not feel thatyour request for a review of the eligibility decision should delay the review on Mrs F. This being the case we have requested that the Funded Care Team carry out the review that is now overdue"

As you can see, I'm no nearer getting a date but I am nearer to giving up! Is this the plan??? Or am I cynical.. throughout all this none of the professionals seem to remember that there is a PERSON at the centre of this with a condition that can dramatically change over the course of 6 months which is more or less when the first DST assessment (that we consider flawed)was done.. who now on top of everything else is confined to a wheelchair despite having supposedly two good hips (albeit one made of something other than human bone!)

Sorry to sound defeatist but it's the way I feel... during all this we continue to get bills for the nursing home where my MIL is staying... Only a small amount owed at the moment (£2000) but she's only been there since March 2010...

OMG.. oh how I feel like giving up...

Jan x(sorry for any spelling errors)

 

[BeckyJan]

Hi Jan:

I am so sorry about the immense confusion - I suspect their jobs are at stake under new Govt. reorganisation!!!!

she's 'safer' there as in their experience, if she falls and breaks the other hip it

Sad though it is, you must now put 'high falls risk' at severe/high risk!

Try not to despair. At least now they are recognising that action is necessary and hopefully there should be back payment if the Appeal is successful.

Good luck.