Took Hubby to RNOH Stanmore on Friday. Private high needs ambulance crew were great, took the time to politely listen to my pre briefing and this then meant things went pretty smoothly. He had an MRI scan on his back and then a consultation with his consultant. Bloods were taken to try and determine why he is getting fever like shivers and increases in spasm activity. Find out results next week some time.
Got word today that Dad, is very poorly and not expected to with us for very much longer, 1-2 weeks estimated. Still no ad hoc carers provided so that I can visit, that the health care system in the UK today, no one gives a shit.
I am bit concerned about my own health as for the last 4 days my lower back has been killing me. Going to try and get the GP to send me for an x-ray to rule out anything serious. Very painful for me moving Hubby about.
Dept. of Health asking for feedback again:
There is a group at the DoH that is looking at the future (2014+) of giving people who qualify for continuing NHS provided health care a personal budget. Obviously pros and cons to this. I can only say what we have at present, is not working for us, this is what I put to them ,
While I am not in your target audience to read this discussion paper on the possible future of personal health budgets to those who qualify for continuing health care provision. I am the wife and main carer for a spinally injured man who qualified for continuing health care in Oct 2009 to be provided in his own home. Our story can be read at http://onmybiketoo.blogspot.co.uk summary in Oct ’11 entry.
The system as it stands is not working for us.
1. My first problem with the system is that all the patients go through a rigorous screening program to ensure that their need is on-going nursing / medical care, but then the system, provides them with minimally trained carers on or near the minimum wage.
2. That the person at the PCT in charge of ensuring that the care is provided has no incentive to ensure that the care provided is appropriate, adequate, or timely. Instead the incentive for career progression is getting the cheapest option that they can get away with.
3. Since qualifying for NHS provided care my husband has received sporadic care provision from care agencies more concerned about their profits rather than providing appropriately qualified staff.
4. Our most recent gap in coverage , no carers provided since July 2011, new agency named in November 2011, by Feb had come up with only 2 possible male candidates, one lived over 50 miles away the other got another job by the time they moved to secure tenure. Meanwhile I have been left with absolutely no support to care for my husband and now since November I have been begging for some respite care so that I can visit my dying father (1-2 weeks left to live now).
5. I have been unable to work since 2009 because of the failure of the current system, I have lost over £150k in lost earnings, not to mention lost opportunities to enhance my career.
So I write this to you , to remind all that there are real people out there needing some real positive changes to the system as it is not working at the present.