My mother-in-law died about 2¼ years ago, while we were just starting a claim for refund of care costs. This was after and EU ruling which directed the UK govt. to look again at certain situations. We (my wife) and I reckoned that my Mother-in-law's case fell into the correct category, so we put in a claim. That was in late 2012, before she died in September 2013.
Despite visits, phone calls and emails we have, basically, heard nothing. The team have moved offices, changed phone numbers etc.
How long have others waited?
We also sent in our claim for retrospective restitution in September 2012. My mother was admitted to a care home in March 2004 following a hospital stay after falling at home and breaking her hip. She passed away in February 2011. She was in the care home for that whole time at a cost is £142,000.
I wrote dozens of e-mails to the various departments in the NHS and to my MP. I made formal complaints about the lack of responce from the NHS. At no time would they commit to a timetable for completion of our claim.
In March 2014 they carried out the Checklist Process which found in 2007 she was entitled to a full review for NHS CHC. This was notified to us in October of 2014.
Yesterday (20 February 2016),
ironically 5 years to the day of my mothers death, we received the Needs Portrayal document which is the step before the case goes in front of a Multi Disciplinary Team to decide if she is entitled to CHC. This meeting is scheduled for 21 March. The document is 57 pages long and full of medical terminology.
It has taken literally hours and hours of research on the Internet to follow advice from various sources to try and advance our claim. Whether this has made any difference I really don't know, and I am certainly not confident of success when reading the problems others have experienced.
However, the delays and lack of information that the NHS have responded with has made me more determined to see this through to a successful conclusion.
Not sure if this helps, but is our experience of how long it takes.