The Burch Story – How things can go so badly wrong

Guest post by  – Angela Cavill-Burch        MBA / NEBOSH

Terence is C3-5 partial tetraplegic in inhumane pain, spasticity and spasm. His Spasticity is so bad that I have to regularly forcibly straighten his legs, causing myself injuries to my neck, shoulder and back. He does not sleep so I do not sleep, we are imprisoned in our home except for two weekly trips to private physio, NHS one being withdrawn on 26 June 2010.

19 May 09 first email to Stoke Mandeville asking for help.

05 June 09 Out patient assessment at SM

07 June 09 Report promising admission to fully assess condition.

07 July 09 another out patient assessment @ SM and then we think because of the report, we are on the waiting list so we wait and wait, and wait. Meanwhile writing lots of emails / letters / telephone calls etc begging for help.

Oct 2009 pass the Continuous Care Assessment for Fully funded Carers due to on going nursing need.

November 09 meeting with Cont Care mgr as not happy with expertise of agency sent. Agreed to get more appropriate one, and so again we wait and wait….. Have help on 2 nights a week only and no help at all over xmas for 5 weeks, also no help at all for last 2 months.

Dec 2009 complaint letter to Stoke Mandeville.

Jan 2010 SM another out patient meeting offered baclofen pump or nothing, not helpful or supportive.

17 Mar 2010 complaint letter to NHS P’Boro.

30 June NHS physio withdrawn. Private physio now costs £100 per week.

July 1-7 Hunger Strike – finished because promises were made.

06 Aug 2010 referral for knee surgery

29 Sep 09 Knee operation aborted due to too disabled for local hospital.

October –  New referral made to Stanmore and we are told we start from scratch even though GP stuffed up as referred to inappropriate hospital.

12 November 2010-  meet with new Orthopaedic Surgeon who says he may be disagrees with original diagnosis but TDB will have to wait until Feb to find out as he needs to be an in patient at spinal unit so that appropriate measures can be taken to carry out all the required scans.


Angela Cavill-Burch MBA / NEBOSH

2 Responses to “The Burch Story – How things can go so badly wrong”

  1. James Hood Says:

    What an appalling tale. But believable, because I am a full time carer for my wife who is a stroke victim and half paralysed. I suffer the slings and arrows of outrageous bureaucratic incompetence at the hands of Cornwall Council and PCT Sorry to say I understand pain and despair. Am trying to help with the local Carers Partnership Board. We live near Penzance – where are you?
    Please email me and maybe we could co-operate?
    James Hood

  2. Angela Says:

    Update 3rd Dec 2010

    Things pain wise for Terence are about the same as last week. Bad back
    spasms, excruciating bone on bone grinding and pain from his left knee, feet
    and ankles particularly bothersome. Very difficult to relieve constant
    pressure on both. Right ankle slightly swollen on outside of ankle area.
    Still getting pain and numbness in right arm and fingers, he thinks he has
    trapped a nerve in his neck.

    Urine sample put into local Doctors on Wednesday – no results available yet.
    Urine amounts seem to be okay and bowels evacuated on Wednesday without too
    much bother, although a little bit verging on the constipated side.

    Attended a hospital appointment yesterday at new Peterborough City Hospital
    to have a scope put down TDB’s neck as he has some minor difficulties in
    swallowing at times. We think it is scarring at site of tracheotomy ,
    consultant did not say whether he could see that or not. But said nothing
    major going on as far as he could see. Wants TDB to have an x-ray of him
    swallowing just to be on safe side. [ for
    further info if interested.]

    From a Carers perspective : I NEED HELP ESPECIALLY ON NIGHTS ..loud enough
    shout, anyone out there hear me?

    I awoke (bit of a joke since I haven’t slept more than two hours since the
    night of 16th September last) this morning feeling like someone had taken a
    baseball bat to my kidneys and lower back, my left shoulder feels like
    someone has hung me from it and my knees well lets not go there. We have I
    think concluded the interviews for our carer team and they should start the
    home based training from next week, not expecting to be able to fully relax
    with them until after xmas. This does not resolve the dangerous manoeuvres
    carried out on TDB’s legs at night, for which I have requested a trained
    Physio for, the carers we have recruited do not have the specialist medical
    training, or knowledge to carry out the forcible straightening of TDB’s legs
    in a safe manner, for them or for TDB. Physio types are the only occupation
    I can think of that have that knowledge.

    Basically we are still in dire straits here in the Burch household, just in
    case someone gives a ….[pick a rude word].

    Today is Carers Rights Day and International Disability Day by the way.


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