#DisruptForSickleCell

Some of you may have seen this news article about how people living with #SickleCellDisease are being denied PIP. In my view, the issues are bigger than what was covered. It’s not simply just a case of Sickle Cell being invisible.

Over the past four years, I’ve hosted a PIP workshop, to at least introduce people to some of the pitfalls of the application process, starting with the application form itself, and what to expect from the face-to-face medical assessment.

The statues quo doesn’t, and is not likely to work for anyone living with Sickle Cell, especially when we factor in the fact that most of these assessments are done by Physiotherapists and Occupational Therapists. Yes, sometimes, nurses. Doctors??? I don’t know of an assessment that was done by a doctor.

What I think would start to make a difference is the skillset the assessors have. People living with Sickle Cell Disease should only be assessed by Doctors and Nurses with Haemoglobinopathies experience. Not OTs, and Physios.

#DisruptForSickleCell is my way of saying that the Sickle Community needs to think and approach PIP differently.

#DisruptForSickleCell PIP Workshop is coming up in September. Join us, as we attempt to clarify this messy situation with Sickle Cell and PIP. Date, time and place will be announced soon…

One thought on “#DisruptForSickleCell

  1. I totally agree with you and I believe that experience is the best teacher. It is the doctors and nurses who normally treat and care for sickle-cell patients.
    I would support that doctors and nurses should be part of the assessment team.

    Like

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