by Jane Green MBE
Imagine being disabled, chronically ill and perhaps even a carer for similar in your family network yet often not believed . Then find it costs you £12000 more a year than the general population.
This article in the The Guardian and at IPPR (think tank) today 'estimated that the UK economy costs due to long term sickness is £43 billion'. Dame Sally Davies, DBE, states that 'good health is not only vital for people to live enjoyable lives but that it is also a "crucial determinant of our economic prospects, both at an individual and a national level"
The Think tank goes on to say that experiencing physical, health conditions , mental illness or a long-term physical illness of another household member were all associated with a drop in annual earning of at least £1,200. Then we know how the extra supports and care we need soon adds up.
I believe a crucial part missing is the voice of these misrepresented, and often neglected minorities who often are not even believed as the physical health issues seem incongruent, with little research or curiosity yet is heritable so often affect other family members and is such a huge population (neurodivergent). We tick nearly all the most vulnerable characteristics yet the inverse care law means 'perversely - people who most need health, care are least likely to receive it' - J Tudor.
At SEDSConnective we believe we as a community can now transform health, social care, education and employment outcomes. We have been disbelieved for so long. We have had to MASK pain, illness even injuries due to historical medical and social bias but at what cost to us, not only our physical health but the impact on our mental wellbeing and those we care for?
We lose out on education, employment, health obviously, social mobility and right to an 'enjoyable life' I believe we have a right to be believed but keenly supported in 360 holistic view of being a human in all areas. Not siloed off into a part of health or even intersectional neurodivergence. As a user led charity with wonderful members who often have lost nearly everything we are empowering each other to communicate this and help transformational change. We do not need more organisations allowing us to have representation with no power. We need to be leading this for the benefit of all of us.
Jane Green MBE Chair & Founder SEDSConnective, NonExec.