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?