In New York

In New York

Monday, 16 March 2015

In which we meet The Prince of Darkness

Last Thursday Roch had his NHS Continuing Care Assessment. At present the Local Authority pays for 35 hours of care a week through the Direct Payments scheme (with a sizeable contribution from us).  This is regularly reviewed and if the Local Authority feels that proper nursing care is required and that the NHS should be picking up the bill, then the NHS carry out an Assessment for what they call ‘Continuing Care’.  So this is where we’re at. 

After a two and a half hour interview which involved examining how his condition impacts on every aspect of his life, a process both physically and mentally exhausting  for Roch, the gentleman conducting the interview (let’s call him the Assessor) announced that he did not think Roch was eligible for Continuing Care. I found that I was unable to take my leave of him with my customary civility. Not because of the decision he made (although I am not convinced that he has reached the correct conclusion) but because of the unsympathetic way in which the process was carried out.  As always in situations where I am experiencing an unidentified, but strong emotion, I withdraw. Once I knew that this would be his recommendation following the lengthy interview, I took refuge in administering Roch’s bolus flush and feed, barely acknowledging the man’s departure.  I knew I was feeling unsettled and upset, later I knew I was angry.  I certainly felt confused - the process is complicated and the language is dense and difficult to understand. I wish now that I’d clarified my thoughts and distilled them into a question for the Assessor. I imagine that my question would have sounded something like this:

“Okay, so I know I am not part of this decision making process (here I would have indicated with a wave of my hand the Community Matron and Social Worker, also present, who form part of the Panel who will submit a recommendation), as I am only Roch’s Carer, but if I understand correctly – what you’re saying is that although Roch has Motor Neurone Disease, a progressive, degenerative neurological condition, which is fatal – and he cannot mobilise at all by himself, is on a ventilator 18 hours a day and takes part of his calorific intake via the PEG, is on medication and has to have his continence managed carefully – he is not someone who needs nursing care? Is that what you’re saying?”

Now, if I’d asked that question, I have no doubt that the Assessor would have replied impassively with something like:
“Yes. We have gone through all the questions and on the basis of the multiple choice answers chosen, it will be my recommendation that your husband is not eligible for NHS Continuing Care.”

And that would have been that. But at least I would have been clear in my mind that he knew what he was doing. The fact that the disease is progressive apparently doesn’t matter – another assessment will have to be done in the future and we will have to undergo the whole humiliating process all over again. Roch was exhausted and upset afterwards. The guy had no idea. It’s not as if we asked for this, but I felt insulted that we had been put through the process and then turned down. It was as if he was saying (well, he was saying) you’re not sick enough yet, to Roch and to me – you don’t need our help. And we are managing well on Direct Payments and with all the help and support we receive from Roch’s healthcare team.  

For instance, there have been no hospital admissions because we have been successful trouble shooters in conjunction with the Community Nursing Team. In fact it seems to me that we are being penalised for managing Roch’s condition well. We were asked how often we saw the health professionals. If we said often, he seemed to take this as meaning we had adequate support at home – if we said intermittently, he seemed to take this as meaning that we didn’t need regular input from health professionals. He was constantly looking for ways to minimise Roch’s needs. In the section covering ‘mobility’ Roch mentioned that he could lift his left foot slightly to assist with dressing. This was taken as instant proof that Roch can help with dressing and transfers. Well, I’d like the Assessor to try to dress Roch and see how much assistance he can give.

 Meanwhile, the whole exercise made Roch feel like a ‘Bag of Cost’, in his own words.  The NHS batting him back to the Local Authority to continue to pay for his care through the Direct Payments Scheme (as I say, with a sizeable contribution from us).  But for me, it’s not about the money. What really makes me mad is the attitude that we invited this discussion, as if we were fighting for the right to free care from the NHS. You know what? I don’t care who looks after him, as long as it’s skilled and adequate care – but I don’t understand how a layman (who I am not convinced even understands MND properly and certainly made no effort to do so on Thursday) can make that assessment. He wasn’t even listening to the Community Matron – or the Social Worker. He did say that they can email him with their recommendations and that he will include these in his report to ‘the Ratifier’.  Neither agrees with his assessment.

So next we wait to see what the Ratifier says. Roch has christened the Assessor ‘The Prince of Darkness’. Now, he’s not really suggesting that he is the embodiment of evil, but it clearly illustrates how Roch felt about the way the Assessment process was handled.  Need I say more?


  1. Hi Deirdre

    I am so sorry you had to go through the CHC assessment - I feel your pain.

    We had a very similar experience with the woman from CHC and a social worker making me cry, and Colin banning them from ever stepping foot in our house again! The assessor (christened 'The Bitch' by Colin!) crossed through vast swathes of the paperwork because he was able to talk (but not able to answer the phone or use email as forms of communication), because he could feed himself (despite taking hours and losing much of the food from the fork in the process) and because he had a catheter and therefore didn't need help with toileting.

    It's making my blood boil all over again just thinking about those horrid interviews! I think that was when we said, for the first of many times, it would be 'easier' if he had cancer.

    This journey is soul-destroying and you wish that they could spend just an hour in our loved-ones position and realise how hideous it is, and how they make it even more difficult.

    Sending much love and hugs.

    Helen xx

  2. My partner was assessed for CHC when he was in hospital with a respiratory infection. At the time he was only able to move his head and could still speak but everything else had to be done for him. It was decided that he was not eligible! When I appealed I was told that the assessor had decided that, even though MND is progressive, in my partner's case she had made the decision that it would not deteriorate within the next three months and that, because he could move his head he was not immobile. No one understands how she was able to say that in his case there would be no deterioration and in fact she couldn't have been more wrong - he died just over three months later, wondering how much worse he had to get before he could be deemed eligible.