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.
“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.)