Written evidence from Brown (HAB0131)


I am submitting a report on behalf of my 19 year old son.  He has been unwell due to ME since a bout of EBV when he was 10.  We did not claim any support initially, but when he remained poorly we submitted a claim for DLA.  All evidence was submitted, but his claim was refused.  We asked for a reconsideration and he was (without further evidence) awarded a high rate of mobility and low rate of care.  The experience was demoralizing and the initial refusal, given that it was overturned without further information, appeared unfair – please consider that we, as many families, were coping with a very unwell child and the intense worry and distress that brings.

Our son, at 16, moved onto a PIP claim and at this point was visited by an assessor.  We have always attempted to keep our son’s spirits up, to encourage him to hope for recovery and to emphasise the (minimal) things he could do rather than dwell on the things in life he was missing.  This is crucial to minimize the risk of comorbid mental health issues and to support recovery – stress, anxiety and depression only serving to amplify the debilitating symptoms of ME.  However, the process for PIP relied utterly on him facing all the aspects that he couldn’t do – bear in mind he has been ill since age 10, and so to him those teenage years of developing independence were missed and he was not noticing many aspects of help that he received (meals, shopping, tidying, money, organization, filling a bath, folding clothes….)  Informing him of everything we do for him, and forcing him to understand how that isn’t usual, was utterly heartbreaking and affected his mental well being and condition for some time afterwards. 

In addition, again please remember that this is a poorly child, we had to plan carefully around the assessment to limit the after effects and ‘payback’.  Every relapse of ME makes a recovery less likely, and watching your child in pain and exhaustion yet unable to sleep, or being unable to spend any time together because even a light or voice is desperately uncomfortable, or finding that your child cannot form words or tell the time for lengthy periods due to cognitive fatigue… imagine please the distress and fear that causes.  So, obviously we ensured that he rested in the days leading up to the visit, and cleared the calendar to ensure I could provide full care in the days after.  The assessor’s first comment was that I should have ensured that our son had a “busy few days” and that he “showed himself in his worst state”.  How can any parent be expected to deliberately worsen their child’s condition in order to claim? 

There needs to be so much more information and understanding about ME, and greater compassion and support to parents and young adults making claims.  



May 2022