We are still here ! You uncaring *******

Dear NHS Addenbrookes,

I write to you to express my extreme anger at the way my Tetraplegic husband case has been treated, or actually not treated as that is the case in point. This has culminated in his vital life changing operation due tomorrow being cancelled. Your staff have, so far, failed to seize an opportunity to end the 2 year suffering and fight with the UK NHS system that my husband and I have had to endure.

Hubby had a test dose of Intrathecal Baclofen at the specialist spinal unit in Stanmore in January of this year, after exhausting all the possible oral medications that you could think of. He had developed what he thought was a good patient / doctor relationship with Dr XXXX1 locally he having helped him secure a regular supply of Sativex, which helped his severe spasticity / spasms to a certain point. Having found a doctor that he felt he could trust and knowing how difficult the long journey to Stanmore was going to be for him, he asked the good doctor for a referral ( March 28^th) to have a Baclofen pump fitted at Addenbrookes. Thinking that since this Doctor seemed to understand the seriousness of the predicament he was in would write a referral that would expedite his treatment.  Hubby’s own muscles are basically crushing his insides.

So we wait. I then have a conversation with the booking people and find out that Hubby has not been given any sort of priority and has been deemed a non priority case.

Hubby finally gets an appointment with Mr XXXX 27 June. Sees Dr XXXX1 on July 1^st following, where it should have been more than evident to the good doctor that Hubby was getting into medical difficulties as sitting talking to him he was having difficulties talking to him and breathing at the same time. At this time I am begging anyone who will accept my emails that Hubby is getting into even more difficulties. On top of everything he has a Klebsiella UTI , which having contacted Mr XXXX we were led to believe would be treated immediately prior to surgery, the micro biologist not wanting to give Hubby another IV antibiotic course before then.

So Hubby and I hang on, and hang on, every day making the decision as to whether we should really be going to the local A&E , as his pain levels rise every day, as when he sits upright for any length of time his diaphragm locks up. Letter sent to Mr XXXX regarding. Every time we have asked for help we have been directed to our local A&E department which is this case is wholly inappropriate. Hubby can not use an emergency ambulance because he can not without special measures be placed on a trolley, then when you go through the self admission reception process at an A&E no cognition is taken of pre existing conditions, we know having endured several 6 hour processes where I have had to remind everyone that Autonomic Dysreflexia is no joke. We know what he needs it is this operation and urgently, all of which our local hospital can not sort.

09 September – not able to see Dr XXXX1 at Peterborough to pick up re supply of Sativex as caring solo for Husband and he not well enough to make trip in our car.  

12 September – not able to make pre operation assessment email and telephone call to explain.

16 September – phone call from Ward Nurse Practitioner saying that special arrangements for Ambulance transfer for this week would be forthcoming on Monday.

19 September – phone call from xxxxx to state operation had been cancelled.

Failure #1-           To have a priority waiting system in place that recognises the effects of not only the illness of the patient but the effect to those family carers.

Failure #2-           for all medical staff involved to act upon the letters from GP,+ the emails from me as solo carer to get this operation scheduled earlier or at least examine +  reassess patient.

Failure #3-           Lack of meaningful Communication between all concerned.

Failure #4-           Lack of action to save the situation when it first became apparent that Hubby was having travel difficulties. Ie 12^th September.

Failure #5-           Lack of appreciation of particular difficulties experienced by the severely mobility impaired disabled, bordering on discrimination.  

Failure #6-           Lack of recognition that this operation is one piece of a jigsaw for Hubby’s on going care, ie has already had a total knee replacement operation cancelled, waiting to have scans on his one remaining kidney, waiting to put in place a care team.

All of this means that I as solo 24hr carer, as caring for Hubby is a 24 hr job have been left to yet again pick up the pieces of a system that does seem to really care about its patients. Leaving me utterly disgusted with all of you.