Getting coordinated and effective care: It shouldn’t be this difficult!
Frustration
As I write this post I want to scream ‘it shouldn’t be this difficult!’ I realise this place I find myself in, is frequented all too often by parents of children with disability.
My story
My lovely dad has advanced cancer. He has had a challenging two years. Frequent hospital appointments, changing treatment regimes, emergency admissions and pain. In the last few weeks as I have been trying to get him the care he needs it has pushed me to my limits. Despite my NHS knowledge and experience it has felt impossible. Many of the things I have struggled with as a daughter are similar for parents of disabled children:
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No clarity on the which services are responsible (we live in a boundary area)
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Confusing referral criteria and guidelines. Some services insisting on doctor referral whilst others demand self referral
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Paper referrals and letters that take ages
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In ‘good patches’ services discharge, then you have to jump through hoops and wait for re-referral with urgent need
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Hospital and community pharmacy’s dispense tablets from differing manufacturers with different strengths (in my dad’s case this resulted in a significant self medication error)
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Many GPs are involved in your care
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Some GPs do not listen to the advice of specialist non medical staff
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Staff imply it’s your fault when you get confused
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Quality and effectiveness of care is not as good as it could or should be