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* Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Absolutely. I don't use healthcare in this country if I can avoid it and will only go private if I do. I would rather die in peace at home, safe, than deal with the horrors of the NHS. Going abroad means you'll be treated with respect and you can find specialists who know about ME and related illnesses. Going private in the UK at least gives you control to put doctors back in their place when they tell you it's all just chronic stress or to change your attitude. It is endlessly re-traumatising to deal with these ignorant prejudiced people in the UK. * Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? Absolutely. The delays, the utter administrative chaos at GPs and hospitals in the UK (even going private) - constant phone calls to chase up the letters or appointments that they said they'd sort out and then don't. Then they expect you physically present at appointments when telemedicine is all that's needed. It's exhausting and makes me sicker, especially when trying to hold down a part-time job to live and pay for all the private care. If my ME were severe I'd be screwed, left to rot, probably, or, with the NHS, sectioned for 'refusing to get better' as we have seen repeatedly in years past. Medicine in the UK expects us to trust it????! * What would make the biggest difference to you to make care more accessible? Firstly, Labour should try actually funding the NHS. Then we need a mass programme of training for all medical staff in the UK on what ME/LC are, that they are REAL, how to care for ME/LC patients and work around their needs, and introduction of IACCs onto all med school curriculums. Then we need to develop a distinct specialism for IACCs, which could be a subset of an existing specialism, and then that's the specialist you see who coordinates your care and connection to all other specialists you need (as per NICE guidelines). The largest difference would be from an attitude change by medicine, so we're not treated with such utter disrespect. * Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? In Germany and Spain, my doctors let me lie down when I'm waiting for appointments, turn down bright lights, and know that I'm brain addled and exhausted. Then, they actually do tests and treatment. In the UK, they're too ignorant/prejudiced/afraid to try anything. There's still a way to go in those countries too (administration support has often been poor), but the specialists who do work with us in these countries understand our needs. In the UK, no one bothers to work with us to ever find out - we're dismissed at the first hurdle.