Abuse of Continuing Healthcare Fast Track: the human cost

Published 15/11/2016

Please note: This article was published prior to July 2022, and some information may be outdated.

Continuing Healthcare Fast Track

Today’s article is from Sharon, who experienced appalling failings in care for her husband when he was at the end of his life. He needed an NHS Continuing Healthcare Fast Track assessment.

The Fast Track process is designed for people who are either at end of life or in a rapidly deteriorating condition.

The relevant Clinical Commissioning Group (CCG) should put funding in place within 48 hours, with no debate or argument, and it should cover all care needs.

Page 6 paragraph 12 of the Dept. of Health’s own Fast Track documentation states:

“A CCG upon receipt of a completed Fast Track Pathway Tool, must decide that a person is eligible for NHS Continuing Healthcare. Therefore, where a recommendation is made for an urgent package of care via the fast-track process, this should be accepted and actioned immediately by a CCG.”

Sadly, this does not always happen and the consequences can be devastating.

Sharon continues…

“Very shortly after my husband was moved from acute hospital to our local community hospital at the end of his life, my daughter and I were asked to a meeting at the hospital with a local GP and the hospital discharge nurse. We were asked about his future care.

At this point we made it clear that we wanted to bring him home to die and would need support to do so. The GP asked for a Continuing Healthcare Fast Track assessment for him as he was in need to nursing support and in the last weeks of life. This GP commented at the meeting how totally frustrated he was spending most of his professional life helping with patients who can’t get what they are entitled to.

Everyone at this hospital meeting agreed that my husband should be Fast Tracked for Continuing Healthcare funding. However, we were told by the discharge nurse it would be refused by the CCG in any case – not because he didn’t need it, but because the CCG had been told to cut their spending on Continuing Healthcare.

The CCG is and was at this point under external management preventing them from approving Continuing Healthcare requests. So much for the National Framework saying that cost should never be a consideration!

Given the nature and purpose of the Continuing Healthcare Fast Track assessment, we were horrified to hear that it had been refused given he only had at most weeks to live. As a result of this refusal, the hospital started the much slower Checklist and full assessment process (with a multidisciplinary team (MDT) and Decision Support Tool).

I wasn’t invited or informed when the assessment was happening. Instead, I was just told they’d send me a copy of the Decision Support Tool for my comments.

Playing down care needs to deny Continuing Healthcare funding

I did have a meeting with the discharge nurse at this point to discuss the DST and gave some comments. He scored highly on the MDT assessment made at the hospital, but, the hospital was told by the CCG that they had scored him ‘too highly’ and they needed to reassess him and reduce the scores.

By this time my husband was so unwell, but being terminal in your last weeks/days seemed not to be enough to qualify.

False information influencing funding decisions

They went through this re-assessment process, and when finally, we got to see the finished re-submitted document only the day before the panel sat, we found it was full of out of date and blatantly incorrect material in order to down play his condition. For example, under the nutrition section, he was said to have a good diet, he hadn’t been able to eat solid food at this point for months and weighed less than 6 stone!

When we questioned this, we were told by the hospital matron, that because he had managed a small spoon of ice cream the previous day “that was a good diet for him”. They said he had ‘stabilised’, and yet the fact that a person is ‘stable’ does not automatically disqualify them for Continuing Healthcare.

The assessors failed to involve me in or record my own input at the multidisciplinary team meetings in the reassessed document, even though they should do this. When we finally had a look at the resubmitted document it bore no relation to the discussions I/we had had at the hospital.

They played the system no doubt under instruction. It is corrupt and uncaring.

We as a family were going through hell watching my husband/their Dad die in agony and just wanting to bring him back home. They misled us throughout the process and particularly hard was being told absolutely that I could play no part in the reassessment.

It was heart breaking for all of us, because my husband was by this stage so confused. It seemed unlikely he would gain anything from spending his last days/weeks at home because it would all be forgotten.

The GP asked the hospital to apply again for fast track and it was again refused. We had a meeting with someone from the CCG as I appealed this by letter, who said he DID NOT QUALIFY, this was just a week before he died.

Devastating consequences from Continuing Healthcare maladministration

We all really wanted him to have a good death with all of us around his bedside at home. However, without any funding it seemed unlikely we could get him back home. We felt that our only opportunity to get him back seemed to have been lost, and we felt bitter that we would never get that time back again.

This is the dilemma: In our area, there is really no support out there to get someone home in the condition he was in. The hospice nurse told me that they have to wait for someone to die, just so that staff can be freed up for the next person. They prioritise people who are already in the community. My husband was in hospital and so there was no chance.

There is not – and has not been – the support that would have enabled him to go home with proper care, irrespective of Continuing Healthcare money. The ‘one chance to get it right’ is a joke.

My husband was rejected twice for this Fast Track process (finally just days before he died) and twice through the longer assessment process. And, I could not make a complaint about the process (via a formal appeal to NHS England or Judicial review) whilst my husband was alive, because I did not have power of attorney. It seems appeals by representatives/family will only be heard if this is in place.

So we were powerless to do anything that might have got him home sooner. My husband died just a few days after we finally took him home.

Lack of care provision, even at end of life

He never got a Fast Track. With the CCG’s final refusal just days before his death, we were told he wasn’t ill enough. It was at that point, I insisted we took him home with us. We had no outside support in his last days, except for the last three nights when a Marie Curie nurse came and right at the end when a district nurse came and put in a syringe driver.

His own GP was ineffective, only visiting once and didn’t do any more than look in the door at him and asked if there was anything I/we thought he ought to prescribe for him – all of 30 seconds.

Care companies, who I was by this stage happy to pay for privately, had absolutely no capacity locally, as, they said it was two-person nursing care he required. We tried over 20 different companies in a 35 mile radius of home, so we had to manage ourselves.

We all feel so bitter and frustrated that we could not have done more for him. My husband had a very traumatic and horrible death, which we all still find haunting, weeks later. The only comfort we have out of this, is that he at least died with all his children and family around him. I know that we are just one family, but, this is happening to so many others right now.

Healthcare funding cuts and bed closures

Since my husband died, I have been able to find out a lot more about why things went so horribly wrong for him. Our local CCG is to all intents and purposes bankrupt and is run under the “Success regime”, which translates as in special measures. It is effectively being run by the Dept. of Health.

Our CCG (under this external management) is now closing half of all community beds in the county. Apparently, patients will be ‘better looked after’ in their own homes! Without any money to put into community care this is clearly a deception.

There is online a risk assessment on the CCG website, at the top of their risk list, in the critical red zone, is support for people in their own homes. In this document, they say they can’t pay for it and can’t get enough resource/people on the ground to cover it, even before the planned closures, as we have personally found out.

Deceit and obstruction: the appalling human cost

There will be hundreds in this area who are/will be facing what we have had to as a family. I believe in my husband’s case, staff were (illegally) instructed not to mention Continuing Healthcare at the hospital because of this, and if patients asked they were to be fobbed off. So we were a bit of a pain to them, we only got as far as we did, because we were probably better informed than a lot of patient’s families and very determined, although in fact it made no difference in the end.

What was even more disturbing was that we were also totally unable to get the level of care my husband needed to come home privately in our area, irrespective of Continuing Healthcare funding.

There are huge gaps between patients’ expectations based on national guidelines and what happens at the bedside. The closure of community beds is being opposed, however, the CCG has made public consultation meetings deliberately very low key with respect to publicity. In addition, if you wish to attend public meetings you have to register online – not exactly inclusive of the very people (elderly and frail) who this will affect the most.

Whilst my husband was alive, there was the real ethical issue of his right to medical confidentiality, because he did not have the capacity at that point to make any decisions about whether to publicise his case or not, consequently, we/I felt unable to go to the press in these circumstances.

That is why I posted on the Care To Be Different website; it was good to be able to share this with others and it really helped me cope during this dark time.

We will never forget what has happened, and nothing can bring my husband back. We as a family want to do absolutely everything we can, to make sure that our experience is turned in some way to a positive one and we hope that sharing our experience serves to open eyes to what is really happening to the NHS.”

——

We’d like to thank Sharon for sharing her moving story with us. If you’ve experienced similar failings in care in your area, please add a comment below. (Please avoid mentioning specific names.)

More about the Fast Track process

28 links to help you with NHS Continuing Healthcare

Tagged Categories: CHC funding, Fast tracks and end of life care, NHS Continuing Healthcare

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35 Comments

Richard July 7, 2017 at 6:11 pm

Well we really are through the looking glass now ;

Fast track agreed by consultant last night CCG aware at 7.30am Friday by 4pm after slew of e mails and chasing phone calls they (CCG) cant do anything till after the weekend as the fast track team who provide all the CCG fast track care has no capacity; they also note that she can only have 4x 15 min visits a day despite assessed needs of 24 h nursing care.
They are unable to commission nurse care from an agency.

Hospital staff have stated that once fast tracked, all medical care stops so cancelled blood transfusion and took her of iv fluids

Meggie July 2, 2017 at 5:36 am

Can anyone help with a question about Fast Track? What should happen? And can a CCG have its own fast track policy?
After a truly horrendous week in hospital we discharged dad and brought him home 3 days ago. We requested a GP home visit the following day and the doctor, after a brief examination, spoke with us about his illness, recent rapid deterioration and the possibility that he might be end of life. During this conversation the doctor said she would fast-track him and completed prescription forms and said we would be visited by a district nurse and carers would be arranged 4x a day.
After three days it appears that this is Fast Track. My sister and myself plus our privately engaged carer are providing 24 hr care. He could not manage with just the 4 care visits and who would call the district nurse to request pain relief etc if we were not here with him constantly?
I have zero faith in the CCG. What do I say if I contact them? According to the National Framework they should be arranging and covering the cost of all his care, including our carer but how can they? They know nothing of his needs and have not been in touch to find out.
We were due to agree a date for a Decision Support Tool to be completed in about two weeks time but now he has been Fast Tracked he is automatically eligible isn't he?
Advice appreciated. I am too exhausted to think. District nurse I chatted with yesterday implied that even though Fast Tack Continuing Healthcare should provide more - night sitting for example - it didn't happen because it was policy and we were unlikely to get more than the 4 brief visits. She did not seem to want to discuss things further when I said the CCG couldn't have a policy that was different to the law.

Richard July 7, 2017 at 8:21 pm

not dissimilar to our experience today fast track accepted cant do anything at all as only CCG " fast track team" do this and they're too busy but even so would only be 4 short visits never mind meeting assessed need for 24 hour nursing care,
despite stipulation of immediate action etc in framework etc..

Insane or what

Chris-G January 10, 2017 at 1:44 am

Any recording should be turned over to you upon request. It is a data processing act requirement. There might ne a charge. Had you tried to record in similar circumstances say at an ATOS style health assessment, you would have needed to supply a twin recorder of the type that the Police use. That was the policy even if they agreed to record matters for you. They refused single recordings because any copy issued would not have been an original.

Beverly lowe January 9, 2017 at 7:24 pm

I have had my mums Continuing Healthcare reviewed at local resolution but guess what .... Changed only 2 domains purposely so that the scoring remained low. Ny mum has respiratory failure 2 heart failure, pulmonary embolism n various other needs. One domain infuriates me more so than the others as my mum is on NIV so should have been scored severe as per their own criteria. I had evidential report from the NIV clinic. They state that the criteria states that she can stimulate her own breathing which if they knew about NIV would know that it actual works with pressurised airflow and backup breaths so in my eyes does maintain n stimulate airway. Also the meeting was recorded and both my sister in law and who attended the meetings thought all domains were agreed at time of meeting. However when I received the outcome they only changed 2 domains which I have informed them is scandalous. The dispute resolution nurse is also stating I am not allowed a copy of the audio recording just the typed up version of the audio. Is this correct? Also she says I can now send in my comments regarding the appealed domains to see if I can get an independent review. Is this true? Thank you for your help.

Angela Sherman January 18, 2017 at 12:33 pm

Beverly - you can request an Independent Review: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

Richard January 10, 2017 at 7:05 am

If they record then you record its the only way to deal with the lovely ccg folks arguably the audio record could be released under DPA but probably will have been destroyed in line with their local policy by now.

Angela Sherman December 17, 2016 at 3:46 pm

Difference between social care and healthcare needs: http://caretobedifferent.co.uk/difference-between-a-healthcare-need-and-a-social-care-need/

Chris-G December 19, 2016 at 8:30 pm

The link is as relevant today as it was three years ago...... Thank you Angela. Cleared my clumsy attempts up.

Chris-G December 15, 2016 at 11:20 am

I've said it many times Coodie: If a stranger entered your loved one's bedroom (hypothetically, at their own home), and was asked for help, would the person call for a council social worker or a NHS medical professional? That is surely the test that most uninvolved people imagine is the case. Even the government ministers and MPs involved seem to believe in the infallibility of the process whilst clearly ignoring the spiteful complexity.

Just to pass something on. There is no such thing as a 'Primary Social Care Need'. If you suspect that the assessors (if you can get a Multidisciplinary Team (MDT) assessment), are seeking the so called social care needs then they are not assessing properly they are wasting time in an attempt to make it seem that a thorough assessment has been carried out. To dismiss an observed need simply because on the surface, it is 'only' a need of daily living, is perverse and as such is grounds for judicial review. Almost everything done by anyone for anyone else is to assist with such a need. If you have no ability to do such for yourself then the matter is not that simple.

The real and legal task of a MDT is to seek a Primary Health Need. Nothing else. The word 'care' does not even enter into the matter let alone so called social care need. So my advice would be to challenge their social care/needs of daily living comments with the repeated question. 'Are you here to discover a social care need or are you going to do this properly and seek the Primary Health Need (PHN)?' I would do that even if you might agree that the individual need is simply dealt with, because the entire list of needs is what forms a PHN and not what is left unresolved at the end of the assessment. Then log the question at the point in the proceedings every time it is asked and write down their answers. Include demeanour and tone.

What representatives, (take a friend or another relative with you), need to be doing, is attending the MDT assessments with a view to providing blow by blow accounts of every need and at the same time, gathering evidence or recording the silliness at MDT's for subsequent Independent Review that might be necessary and only available perhaps three years after the MDT assessment.

Consider the simple process of making a cup of tea. Fill and boil a kettle, find or clean the correct type of cup, read the care plan to ensure meeting of personal preferences or medical need (thickeners?), and ensure that the correct amounts and types of ingredients are added, (milk intolerant? Diabetic so no sugar? Reacting to Insulin so maybe needs sugar?), make the drink, take it (how far?), to the person, place it within reach in a safe position, ensure that no one else is at risk from the drink or drinks it, record the making of the drink, (physically feed the drink to the patient if required), ensure that it is drunk or establish why it was left, record consumption or refusal. Make another attempt after a short delay to ensure adequate fluid intake. Report poor fluid intake to medical staff or GP. Ensure GP visits to establish treatment.

Now apply this similarly, to all other so called social care needs without relying solely upon diagnoses, because you are trying to demonstrate complexity and/or intensity and/or unpredictability and the need for continuity of care for each and every need and not just clearly apparent medical needs which if they were the only consideration, could be confirmed by a GP and so do away with the entire assessment process.

Nursing can be given in any environment and by any person. As such, adequate medical care is a given. It is everything else that has to display difficulty, to meet the criteria. And that 'everything else', are the so called and usually ignored needs of daily living.

coodie December 14, 2016 at 7:15 pm

So , if maintaining independence, ( doesn't apply as bedbound )social interaction (only with carers, nurses, ..GP and family ), enabling the individual to play a fuller part in society ( how if they are confined to a room ?), protecting them in vulnerable situations ( only whilst in a hoist which was stopped due to frequent accidents ), helping them to manage complex relationships ( who with?and (in some circumstances accessing a care home or other supported accommodation( already in the home) very little social need there.As far as the activities of daily living, they could feed themselves with a fork , ( some nutrition need there as did not eat enough ) bed bath but that was a health need and continence ( double) was a health need as well. All other activities were unattainable in bed.The social day consisted of reading ,TV and family none of which cost the home anything extra as were provided by ourselves so how can they prove a primary social need .Additional health needs included very poor skin integrity and 12 different medications all with various side affects taken at least 4 different times of the day including the potent tanstec patch.And the pain relief wasn't always successful.
At the end of our tether with the amount of work to be done when none of the family have any knowledge of medical matters, sure been a learning curve. Love to try an exam in the CHC process, might get an A*.

Chris-G December 16, 2016 at 1:39 am

Coodie, I've often remarked that for the time taken, I could have done two degree courses.

Chris-G December 14, 2016 at 11:31 am

Don't let anyone persuade you that so called needs of daily living, are not assessable as signalling a Primary Health Need. You need to list every small detail involved in carrying out the nursing that the need requires. Then repeat for every need. That is why most of my family's MDT assessments deteriorate into bad tempered And very long assessments. (We are firm but never rude or bad tempered, the NHS assessors get that way). See........ PG 2 of the national framework and apply the logic that the NHS is responsible for servicing health and social care needs in a holistic manner, under the framework. Here is what a so called social care need actually is, according to the framework........... 2.2 In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation. I might argue that if the loved one cannot benefit from any of that list, or if any part of the daily living needs are complex, unpredicatble and or intensive, then how are any of their needs addressable under that loose definition?

coodie December 13, 2016 at 5:50 pm

Can you let me know Richard what the CCG say the social care needs are that exceed the health ones here??? We have resolution meeting in January and our DST quotes vague terms such as routine, social and domestic needs. What on earth are domestic needs when you are bedbound.?? The cleaners hoovering the carpet in your room from which there is no escape except hospital appointments???? Also the bathroom isn't used because it was too painful to be hoisted for a shower so its bedbaths all the way..
I shall post results of meeting but looking doubtful by what is going on here.

Richard December 11, 2016 at 8:38 am

If it was me I'd stop paying on the grounds she is End Of Life. this will be in the notes somewhere DPA request methinks. If they threaten court tell them great - you prove before the judge that she does not pass the Coughlan test

Richard December 11, 2016 at 8:35 am

Just for fun !
We now have a meeting with the great and good CCG board member NHS Trust member Head of adult social at LA to discuss MILS case (or perhaps they just want her Christmas dinner order)

She has been in since early Feb last year "Fit for discharge" April In summary LA have refused to support any care package at home which is moms wish technically there is no medical issues why this can't happen. LA state her needs are beyond that which an LA can provide and that she needs 24hour nursing care in a nursing home with care from registered nurses. NHS matron agrees with this level of care.

CCG says sorry doesn't pass (in April ) the scoring system). MIL's condition has deteriorated in the last six months - permanently on Oxygen, blood transfusions every 3 weeks and hospital acquired pressure sores on top of advanced parkinson's, seizures, dementia, breast and bowel cancer, heart failure, kidney failure, no functional use of legs or hands. They have refused an updated CHC appeal being heard in January.....
Any advice on the upcoming meeting ?

Angela Sherman December 17, 2016 at 3:45 pm

Richard - if the LA know her needs are beyond their legal remit, then the LA will be acting illegally if they give in to the CCG. Make them aware of this, in case they have 'forgotten'. Read up on the Care Act, the Coughlan case and the legal divide between NHS and LA care - and quote all this at the meeting.

Richard December 11, 2016 at 7:49 am

Hopefully the following will be of some use to others out there;

With reference to deprivation of liberty, unfortunately mom is indeed in that situation in that:

1. Mom does have capacity and chooses not to be in hospital but in her own home not a nursing home.

2 Mom is physically incapable of leaving of her own volition and if she tried we are certain staff would under their duty of care stop her given that no package of care whatsoever is forthcoming from yourself or the local authority.
Any attempt by family or friends to "move her" would clearly result in safeguarding issues if not criminal proceedings being brought.

3 Given mom's diagnosis of dementia, any attempt by herself to consent to going home without a suitable and sufficient POC in place would in all probability result in a reassessment under the Mental Health or Mental Capacity Acts.
For the avoidance of doubt her legal representative has been fully briefed by mom as to her instructions for her ongoing care should she ever be deemed to have lost capacity.

For your reference please also see www.equalityhumanrights.com/en/human-rights-act/article-5-right-liberty-and-security

4. You may find the following relevant in terms of DOL in its narrow and wider meanings;
https://ukhumanrightsblog.com/2015/01/29/what-price-liberty-damages-dols-and-a-cat-named-fluffy/

"... put before the court an agreed settlement package that compromised P’s prospective claim for damages for breach of his Article 5 right (liberty and security) and his Article 8 right (respect for private and family life). Though not explicit from the judgment, one assumes that P also had in mind a common law claim for unlawful imprisonment. The settlement package included damages of £60,000 plus waiver of any fees which might otherwise have been payable for the time spent in the care home (said to amount to £25,000 to £30,000), exclusion of the damages from any means testing for the purposes of calculating his contribution to a home care package and payment of P’s legal costs."

"68. It is hard to imagine a more depressing and inexcusable state of affairs. A defenceless 91 year old gentleman in the final years of his life was removed from his home of 50 years and detained in a locked dementia unit against his wishes. Had it not been for the alarm raised by his friend RF he may have been condemned to remain there for the remainder of his days."

We consider the proposed date of the appeal adds to the breech of moms article 8 and article 5 rights and any further delay is unconscionable irrespective of guidelines this delay simply further adds to her unlawful imprisonment resulting from the failure of ccg and LA to find a way forward.

In order to expedite matter we suggest appointing an independent barrister to sit as a panel member. Most chambers will have someone available at short notice.

The following article from the local government ombudsman is especially instructive on DOL where capacity exists. You will also note from the case that the LGO used its discretionary powers to investigate the actions of health care providers namely the GP practice and CQC regulated Virgin Care. Given this, appropriate weight must be given to this decision by the CCG and the NHS Trust.

http://www.lgo.org.uk/decisions/adult-care-services/assessment-and-care-plan/14-020-346

"12.....the community matrons had concerns for a long time about whether Mrs D was safely cared for at home. They were particularly concerned about the manual handling carried out by Mr C and the risk of Mrs D falling when using the stairs. They felt Mrs D was at risk of unintentional harm. However, Mrs D wanted to remain at home and was considered to have the capacity to make this decision."

In your letter you state

"As reiterated in previous correspondence, the LA has not raised any concerns regarding the CHC determination of ineligibility. I am aware that the care package at home that you seek would exceed their permitted funding limits. This decision is the local authority’s alone and is entirely unrelated to CHC or to the Coughlan judgment."

As you will no doubt be aware the LA are unable (specifically as laid out in Coughlan ) to fund any care irrespective of the amount or location at which the care is provided where those needs are equal or greater than Pamela Coughlan.

The LA assessment of care as stated by their MDT sits outside the legal limit as prescribed in Coughlan being 24hr care by registered nurses as reiterated by Matron.
It is not a financial argument as the Care Act does not allow the LA to set an arbitrary funding limit on care to be set, which appears to be the point you are trying to make.

The LA have actually referred this back to you to be reconsidered including (but not limited to a request) for joint funding made after the CHC determination.
This is evidenced in the documentation released from Trust and the LA under the DPA.

Michael December 8, 2016 at 11:03 pm

My mum is back in hospital again!! She has COPD and lives in a nursing home! Doctors at the the hospital agree she is end of life. We saw the palliative care team who said we are going to Fast Track her - however less than 48 hours later we are told that the fast track has now been denied because the intravenous antibiotics have perked her up!! This is so frustrating, because they said if she goes down hill again the fast track will start again!!! This is just one big joke!!! It all seems like they just want to keep her paying!

Richard December 8, 2016 at 8:29 am

And this back from the commissioning director re our appeal panel J is a paid board member :

Dear Mr and Mrs F

Thank you for your email of 30 November 2016, which my colleague xxx has shared with me as the responsible Director.

I appreciate that you would have liked the appeal panel to be convened before Christmas but, as confirmed in Je's previous email, the 9th January 2017 was the earliest date on which panel members were available, given their other commitments. The timescales conform to NHS England guidelines for convening local appeals panels.

I note your views in relation to the panel members. Of course, beyond the local appeal, you would have a further right of appeal to NHS England and the NHS England panel would comprise individuals from areas not connected to D.
However, all attempts at local resolution should be exhausted before NHS England becomes involved. The CCG is satisfied that, with the exception of J none of the individuals has had any prior involvement in the case and therefore all are appropriate panel members. I have therefore decided to reconstitute the Panel without J. I am in the process of finding a replacement but this may result in the hearing taking place on a date later than the 9th January 2017. We will let you know as soon as a date is confirmed.

As reiterated in previous correspondence, the LA has not raised any concerns regarding the CHC determination of ineligibility. I am aware that the care package at home that you seek would exceed their permitted funding limits. This decision is the local authority’s alone and is entirely unrelated to CHC or to the Coughlan judgment.

In terms of the procedural matters you raise, the appeal panel members would be, with the exception of J, as previously advised. A note taker and a clinical advisor (to both yourselves and the panel) would also be present. The panel proceedings will be recorded. The CHC Manager and Nurse Assessor will attend and outline the assessment completed and timeline of events (eg: CHC assessment date, first line appeal meeting etc.) You will also be invited to attend to outline the key issues of your appeal.

You will receive the same information as the panel members including copies of all assessments, care notes and correspondence between us (including the information you have previously supplied about the Coughlan judgment/ADASS report). After the panel members have had the opportunity to discuss the case with both the CHC Manager and yourselves, everyone other than the panel members, the note taker and the clinical adviser will be asked to leave the room, in order that the panel may deliberate and reach their decision.

Regarding the issue of legal proceedings, your position is noted although, as Mrs XXX has been identified as having capacity, it is unclear how deprivation of liberty can apply in this instance.

Yours sincerely,

Richard December 8, 2016 at 8:12 am

Had this back from the CCG. Interesting particularly in that of those who actually get a Fast Track the time frame is wrong in 35% of cases who self evidently are not in the last 12 weeks of life as (CCG Not (Framework) insist, also in the numbers of SW's who fail to attend hearings and the fact that they are not always invited.

FREEDOM OF INFORMATION ACT 2000 –

Thank you for your request received on 29 November 2016. You asked for information regarding the above.

Your request for information has now been considered. I will answer your questions below:

1. How many CHC applications have you processed in the last 5 years? 3,301

2. How many CHC applications have been fully funded in the last 5 years? 603

3. How many appeals under the CHC process have been heard in the last five years? 276

4. How many have been successfully upheld? 13

5. What is the largest retrospective payment that the CCG has made? £12,716.54

6. How many retrospective payments have the CCG made? 6 (1 - 13/14, 3 - 14/15, 2 - 15/16)

7. How much per annum is the largest CHC POC funded by the CCG? £267,038.95 (15/16)

8. In the last five years how many times have XXX Council social workers been invited to MDT /CHC assessments? 75%

9. In the last five years how many times have XXX Council social workers been invited to MDT / CHC assessments actually attended? 30%

10. Under the fast track procedure how many applications have been submitted? 2,349

11. Under the fast track procedure how many applications have been paid for? 2,297

12. Under the fast track procedure how many applications are still in payment after 12 weeks? 35%

13. How many applicants are still alive 12 weeks after a fast track assessment has been submitted? 35%

Elspethblack December 1, 2016 at 12:16 am

In a letter of complaint to NHS I asked why they didn't comply with their discharge process on two occasions shortly before our mother's death. This included a query on their refusal to carry out a checklist or assessment. NHS have been unable to reply to me because they need advice from the local authority and the local authority are not replying to them. I have been waiting for a reply from NHS for almost six months. I find it unbelievable that NHS can't answer a query about their discharge process, but I think their reluctance to put something in writing says it all. Our mother was eventually fast tracked by the nursing home, but only after I had asked many times. It is so cruel to have to fight for this when the only thing you want to do is spend time with the one you love in their time of need.

Chris-G November 29, 2016 at 8:18 pm

As far as the so called fast track process is concerned, to many patients, it is a joke. In late 2013 my FiL, had his CHC removed. He was funded in 2008 after becoming immobile after a brain injury accident.
Subsequent to that and still suffering the brain injury, he (on two occasions) had both legs removed due to ulcers gained whilst in intensive care during 2008. Hospital discharges after 2008 all occurred without checklists.
We were warned that one amputation might need doing again.
Even though surgery was planned in 2013 and undertaken in 2014, my FiL continued to be denied CHC or even a re-assessment. After several hospital stays in 2014 and 2015 (another involving intensive care and another requiring two rounds of resuscitation another for amputation that failed again and needed doing again) he was still being ignored for re-assessment or even check-listed.
Because he already lived in a nursing home he was simply sent back there by the hospital to recover at his own expense.
This was also the case after his second amputation of the same leg and after being sent home after the same amputated stump literally exploded during the removal of the stitches. He was still expected to pay for this care. This was even after being sent home to die within 5 hours because the hospital took him at his confused word to leave it alone because 'it will scab over'..... 'I've had worse playing football' etc. etc. They said that he had capacity to make decisions. This was even after refusing a DNR and insisting that nurses look after him.
Few people survive an inch or more of thigh bone protruding from an infected and rotting thigh for more than a few days......... Ergo where was the Fast Track assessment? Simple.......... Discharge was carried out under ' Discharge to Assess' procedures..... Because he already lived in a nursing home. This practice is more commonly known by those it is inflicted upon as 'discharge to forget'.
The fact is that once in a nursing home, the NHS feels free to exclude the council during discharges and so ensure that further nursing care is provided by the patient or/and council taxpayers.
During all of this, my FiL developed untreatable cancer that put him in intensive care. So even after he had another amputation of the same thigh and achieved some recovery, he was already dying from liver cancer.
He was further discharged several times without CHC checklist or assessment until his early death in Jan 2016 from liver damage caused by him confusedly ripping out a surgically implanted and secured drain that passed from the back and out of the front of his liver.
Even at that time he was scheduled for return to his nursing home, again without Fast Track or even a checklist. He could have died at almost any time from five incidents since mid 2014. Then he finally did and all whilst paying for his own nursing care.

Shirley L December 1, 2016 at 11:36 am

Hi Chris
This situation is truly awful. I find it so difficult to believe that this can be happening in the UK. We all know the NHS is strapped for cash but the government surely need to address this whole situation . Mum's MP has recently commented online that £85 million is being wasted nationally by GP s prescribing drugs such as paracetamol etc .when they can be purchased in supermarkets for as little as 19p . The Secretary for Health surely needs to get his act together and provide CHC to those are clearly in need such as your Father in law who I am sure paid his NI contributions for many years , as did my mother and father. I am appalled that this has happened to your family and we must surely ask how the NHS are getting away with this.? Something is very wrong !!

Richard November 16, 2016 at 12:13 am

Our MP is very sympathetic but as mom in law is not his constituent very little he can do. MIL's MP only shown perfunctory interest.

Chris-G November 30, 2016 at 2:28 am

Richard, three mps were involved with my mum and a different extra one for my FiL. They all passed the buck to my local mp even though it was relatives in their constituencies that needed their individual help. One even stated that it was against parliamentary rules for mps to work on the same cases....... How do committees work?

Chris-G November 15, 2016 at 7:37 pm

A shameful obscenity. Not unique and all the more shameful of those that leach huge NHS salaries for such poor effect while dispaying even less humanity. Not one of these people involved will see a day of punishment, some will even be promoted for keeping within the budgets. I can only hope that what goes around will truly come around for them.

Richard December 1, 2016 at 7:37 am

Was genuinely staggered seeing the CCG salaries & pensions for the various part time board members esp when most have second well paid NHS jobs; these folk are unaccountable even to MPs we are at the point of booking her Christmas dinner in hospital where she is stuck (Feb last year) I there has to be a way to force changes in accountability and public governance.

Shirley L November 15, 2016 at 9:42 pm

I agree Chris. The NHS appear to be judge , jury and executioner in every element of the the CHC process. We are about to send our case to the Ombudsman , remains to be seen what happens . There has been so much maladministration in my late mother's case which I have been fighting for 4 years . It is truly unbelievable and not at all what you would expect from the NHS . They are really letting down so many vulnerable people and it is very unfair situation which really needs to be addressed .

coodie November 15, 2016 at 3:51 pm

Our mum was poorly in a nursing home without Continuing Healthcare (CHC) (subject to an ongoing retrospective review). However when clearly at the end of her life, we made the decision for her to go to hospital against her " death plan " of passing away at the home. We had a good experience at the hospital where they tried to save her although quite fruitless and she had a peaceful ending not in pain which they managed well. We have since found out that a G.P. refused to send another resident to hospital at the end of life citing that the home was quite adequate, however no-one at the home could use the morphine machine and he died in agony. I feel for Sharon since you should die at your place of choosing however I am glad we stuck to our instincts that told us her death would not be well managed at the home.