I am so pleased that you decided to go ahead and appeal the original decision Malcolm. Well done. Only you can decide about the latest care decision. Personally, I would appeal against this new decision.
When my husband was awarded middle care again I wrote a diary of a typical day and night of the care that he needed. You could do this and also send copies again of your Dr/Specialist letters and any other evidence regarding care in case they don't bother to look carefully at your file notes.
I would send an email to my MP stating clearly and precisely exactly what has happened before you got today's decision. Attach to this copies of your evidence.
Also tell the DM that you are enlisting the help of your MP.
Thank you so much limasierra for your support. I hope you win your appeal and soon. People who have never been through this have no idea the pressure you and your family are put under. Thanks again and take care.