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OPINION: PIP saga is over (for now) but Covid threat to loved ones still casts a shadow


By Karen Anderson

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Karen Anderson.
Karen Anderson.

The PIP saga is over! Started in mid-June, I am delighted to be able to report that we now have a letter confirming the boy’s award for the next three years. A great relief after a hard few months of anxiety for all, but the whole experience is really difficult to handle. I have said before that I have no idea how he will cope with this when I am no longer here to deal with it on his behalf – a real and constant worry about lots of aspects of his care as I wend my way towards my 60s in a few years.

Another thing about it that I don’t get is that with autism being a life-long incurable condition, why are we forced to go through this epic rigmarole every three years? I had to do a short telephone interview as his authorised advocate, so I asked the DWP bod that very question and she said it was because as people with autism mature, things can change and their need for financial support can change as well.

I do get that – our boy is very different now to what he was like three years ago. But not when it comes to the key difficulties that he has in sensory perception, social interaction and planning and organising himself. He grew taller and hairier, but the things that were hard for him and impacted on what he could cope with when he was two years old are still having the same effect now, he can just explain it more and we can talk about it. But fundamentally, he is still restricted by his disability and always will be.

In other news, I am getting increasingly concerned about the way the UK as a whole is emerging from the pandemic. No longer locked down, coming out to play again is not as simple as your mate knocking on the door and bouncing a football on the path. We have made a very difficult decision that despite the release of restrictions in England, we are not going to visit my mother-in-law next month as we are not comfortable with the prevalence of the Delta variant in the area she lives in, along with the fact that south of the border mask wearing is not compulsory.

As the boy’s mission in life is to travel up and down in elevators, there is no way of ignoring the fact that we would be spending our days in close proximity to unmasked folk, then heading back to spend our evenings with a 92 year old with angina and respiratory

problems. I just can’t be the outlaw that brings her a virus that has the real potential to kill her. Distance would not be enough for me to cope with the guilt and the wrath of my husband’s family if that happened. We did manage a day with her in July for the first time in 18 months, so I am probably less uncomfortable with that decision that I would be if we hadn’t been recently.

Carers like me are having to make such difficult decisions all the time now that the mantra is that we have to ‘learn to live with’ Covid. Several I know are still shielding with their loved ones as they can’t face the perceived risk outside their doors. That’s not living with anything worth having, is it?

Karen is Mum to an autistic teenager and campaigns for the rights of unpaid carers to be supported in their caring role and involved in the decisions that affect their lives and the lives of the people they care for. You can find her on twitter @Karen4Carers.


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