Forum

The power of the phone

 

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I've been busy all week, and the attatchment is what I sent to a reporter at The Liverpool Echo. I then told the Deputy of the PCT that if I and others got this service the hack would write a.glowing article......................or it would be a blood bath. I am very partial to a phone threat ( I had to give up the 'real deal' )
 
The result on monday 6 or tuesday 7 SHOULD be that I get the 'roids as a day case at the hospital.. The home visit will not happen 'cos the risk assessment team are worried, and the hospital has a REALLY  bad Med Neg record.I offered to sign a giant disclaimer, DNR, no heroic proceedures, blah blah The PCT will be appalled as I will be setting a precedent, and with more threats the door should be open for others.
 
So we will see....................Slight problem me is that if I am right, especially morally, and not particularly  busy, I just run the phone bill up. You will know when  we do.
 
Wb................................Below should be the letter to the journo
 
Dear Helen, further to our conversation of monday 30 jan.I was diagnosed with Relapsing remitting multiple sclerosis in sep 2001 and am now refered to as Secondary progressive. MS is the most individual of conditions and how an individual is affected depends on gender,age,physiology,medical history,ethnicity,family history,mental strength, blah blah
 
My condition has been gradually deterioating, over 11 years, decreasing mobility increase in pain,fatigue,cognitive abilities blah blah.However in the past three weeks,I have lost the ability to stand up without holding onto something,cannot walk more than 2-3 steps without assistance,donot sleep for more than three hours and have appalling neuropathic pain in the soles of my feet.,
 
I currently wear two 10mg slow release morphine patches,take two other prescription 'pain medications' smoke two cannabis grass joints everynight, and drink some wine.I have to do this to get the slightest relief,as I am denied SATIVEX by the PCT. They cite various reasons, a couple of which I can show to be very tennuous.It is purely because of the money involved.
 
To try and help myself I suggested to my GP a three infusion course of IV steroids. I last had any 2.5 years ago ,but to no great effect. The NHS have nothing they are willing to offer.To access IV steroids I/GP am supposed to contact Walton Neuro,wait perhaps two or three weeks, then do three 30 mile round trips to wait 3-4 hours for a 40 minute proceedure. I live one mile from  Arrow Park Hospital, and cannot be treated as a day patient there.
 
However, in the past five years I have received the steroids 3-4 times at APH as an inpatient.I access the GP out of hour service and get admitted.I hate doing this as I bed block but am given no option.Walton HATE it that I can do this as they demand obedience the party line is "Don't try and help yourself, we have neurologists who know much more than you" As a lady is present I won't go there
 
However, this time my physical condition is so poor an inpatient stay would cause me a lot of damage, and I wouldn't be allowed to smoke cannabis as part of my pain management .(Kingston General perhaps?) I suggested to the GP steroids at home. How sensible,cost conscious gentle on me blah blah................NO.......... The Wirral Admissions Preventions Service say I can't have steroids at home. The nurses involved are happy to do it, I have never had a bad side effect and it would be three 45 minute visits,but THEY won't allow it
 
I am contacting WAPS later today to explain that I have spoken and written to you and how ridiculous they are. I will get personal with them,threaten and really unload on them. I am not expecting a miracle from the 'roids, but there is nothing else, and at the present rate I will be paralysed from the hips down in 3-4 weeks.
 
I hope that we can do business, as I think I've demonstrated how badly things are going for me. BUT it isn't just about me...............How many people bow down and out because of the way WE are treated, and the lunacy of the NHS is allowed to continue
 
Regards,  Stephen Wilson

 

 

 

Hi Stephen

I know exactly where you are coming from.

Is the answer 42?

Cheers

Moira

The last couple of times I've had steroids, they came in pill form which I took at home - is this not an option for you?

Luisa x

Dear Luisa, my body used to react very well and quickly to the IV 'roids. The pill form has never dun much,but the GP has come across with a new 'mega oral steroid'. I won't be taking them at the same time as the IV gear.'cos I'm not as daft as I look.

Part of the PCT problem with the IV at home is a nasty and very expensive reaction as they are dripped in........................My solution if I felt stranger than I remember to the IV,is unplug me, sit me on the bog and I drink loads of water. The stuff would flush out quickly. Job done

Wb

WB  - keeping our fingers crossed that you succeed in your quest. 

Frances x

Outstanding letter wb. I really hope it helps.

Karen x