In New York

In New York

Wednesday, 23 November 2016

NHS Continuing Care: An Angry Blogpost

Can anyone tell me why someone with MND has to endure a three hour NHS Continuing Care ‘Review of Eligibility’ interview? If his level of need rendered him eligible in September, do they actually believe his condition might have improved? The more I think about it, the angrier I become.

We had asked for his NHS Continuing Care budget to be reviewed, as the amount of money spent on his care at present, exceeds the budget agreed. This is largely because we have been trying to arrange more care at night. The only reason we can spend extra is because of the backdated payment they gave us after the fiasco of their first assessment (where the submission was never lodged and we waited from February 2015 to September of that year for the next assessment, where eligibility was finally agreed). 

So when the CHC Assessor arrived on Monday, we were expecting a review of the budget. When the dreaded Decision Support Tool was produced our hearts sank. If we had known he was being re-assessed for eligibility we would have arranged for one of his District Nursing team to be present. A social worker who had never met Roch before arrived after the Assessor. At least we had had the forethought to invite Paula B from Ruils in Richmond to attend. Paula has been an absolute Godsend throughout the whole Direct Payments/transition to Continuing Care process and in fact helped to draw up Roch’s first Support Plan for the Direct Payment scheme. 

The Assessor really did not seem to ‘get’ Motor Neurone Disease. The Decision Support Tool (I have spoken about this in previous blogposts and complained about it before the Parliamentary Select Committee in May) is dense, complicated and utterly unsuited to someone with Roch’s condition. 

As she left, she told Roch repeatedly ‘Not to worry,” but qualified this by saying that she could not guarantee the decision of the Panel. At times she would turn to the Social Worker and ask “Is that really more a ‘social’ than a ‘health’ need? She explained that the need has to be predominantly ‘health’ to qualify for NHS Continuing Care. 



He is under the care of three Consultants right now. Is THAT a ‘social need’? 

I am so mad right now.

So of course we will worry. Apart from the worry there is the fact that three hours of this interrogation left Roch utterly exhausted, not just from the effort of answering questions - obviously I helped with this - but emotionally drained, too. That’s because he is not a well man.

Did I mention that he has Motor Neurone Disease? Who ARE these people? 


  1. Deirdre these people are clearly idiots. The whole thing makes no sense to me but I suppose there must be some complexities I'm missing.Really sorry you and Roch are being messed around.So you have to wait ages for them to get back to you? Big hugs xxx

  2. Oh Deirdre - I was I could give you a big hug, but have one virtually for the timebeing.

    These people should not work in the caring profession - the key word being 'caring'!!!

    I remember we went to an assessment at the Job Centre and something similar happened. The woman (who couldn't be bothered to look up from her notes) said 'is it just motor neurone disease or is there anything else?' How Colin didn't thump here, I'll never know, but I think he ran over her toe with his wheelchair on the way out :)

    You are the strongest, most courageous person I know. I know we didn't have a choice but it's surprising what we're capable of when the need arises.

    You rant away - we're here to listen.

    Love to you both.

    Helen xx

  3. I was gasping with disbelief and anger reading about eligibility assessments and the likes. Ireland seems like paradise in comparison.
    We think of you both very frequently as the disease takes an ever stronger grip.
    Best wishes from Ireland,
    Roland and Annette