Sunday, 6 May 2012

MAY: Dark, Soggy and Wet a bit like life really.

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.

My Health:
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 , 

Dear Team,

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 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.


  1. 6th May 3pm just found out my Dad died 1/2 hour ago. Well i hope everyone at the PCt & Soc Services that didnt provide respite care for me to visit feels right proud of themselves.

  2. Very sorry for you about your loss - social services are useless. My dad (in sheltered accommodation) lay on the floor all night unable to reach his emergency cord. Afterwards we found he should have had a Bell Link on a cord around his neck too)He died 2 weeks later.

    When our son had his carotid artery tear (causing a stroke) 2 years ago - the GP who came out said he could have a virus! WE (not not GP) suddenly realised his left side had gone, so we had to drive him by car up to London ourselves.

    When he was discharged home (couldn't walk, no use of left arm and damaged sight ) we had to cope by ourselves for 3 months. We live in a london borough - paying rates to the borough we live in - our GP being in the next one. Finally got some physio which didn't last long although his condition has not improved much.

    I applaud your letter - but doubt that anything will change - and that is the most depressing thing of all...

    Unfortunately, I fear that things are going to get much, much worse. When people are fit and healthy it isn't an issue that many even think about. When you are ill and disabled just coping with each day makes it hard to fight the necessary battles.

    Once again, so sorry about your dad X