I can't not post it though.
I don't like negativity. Generally pointless, but sometimes you do have to stand up for yourself, that's what the last email was about. This one's very different.
I've had the story read back to me that's in today's Western Mail (that's assuming it's not re-written or left out altogether - I'd look like a right numpty then!) and it's not in any way finger pointing or blaming the specific health board, NHS in general or Steve's lead consultant, it's simply saying that there's a system problem that needs to be overridden here.
I want to say at this stage, and it is very important to us that I do so, that I have been very frustrated with SOME of the medical staff during this particular hospital stay, but essentially we are very happy with Steve's "treatment" in that the Nurses are 99% angels from heaven, and the Doctors are there. That doesn't sound very positive, but it's meant to be! Honest!
If the Neurologist has no clue, what's the ward Dr. supposed to do? Must be very frustrating for them, their stats, their bed managers, their targets. I can see it from their point of view - it's just not my problem.
I do not have any "beef" with individuals, I truly believe they are all there to help and do what they can. I'm not interested in getting anyone in trouble, getting compensation or a pay out, any other reason a cynical person could think of for my forcing my corner. That's why I wrote this email, and before I go any further, I apologise. It's a bit hard going at the bottom, but it's all true. Nothing is for effect.
Dear Dr. Joseph,
I was yesterday speaking to the journalist that is doing a piece on Steve for today's Western Mail. She passed on some information from you that she had been given and I feel that I need to address a few things with you directly.
Firstly, I am in no way complaining about the treatment/testing that Steve has received under your care. We have faith and respect for your professional opinion and treatment and have nothing even neutral to say. Everything is excellent. What we do have a problem with is that we have to lie or wait many months to get an appointment at your clinic, I'm not blaming you or your team for this.
We both appreciate that in your capacity there are massive demands placed upon your time, team and your clinic hours, but Steve's frequency of visit is the same as someone with a health condition that is diagnosed and/or managed. Steve doesn't have either of those "luxuries".
We saw you back on April 17th, on 23rd May you sent a letter to Dr. Pickersgill in U.H.W. asking for the second opinion. By that time Steve had begun to deteriorate quickly. A month later, I lied to the bookings centre to make an appointment to see you on 31st July. That took some ingenuity on my part! Worked though.
Steve simply does not have time to wait for these type of time scales. A year ago we discussed the fact that all the test were inconclusive and we really had nowhere else to go as far as testing goes. You would be very shocked and surprised if you saw Steve now.
Secondly, the journalist I spoke to said that I should contact Maria and arrange for you to have a meeting with the both of us. This simply isn't possible.
We tried to attend your clinic via Ambulance transport from Y.Y.F. to R.G.H. on 31st July. The ambulance made it less than half a mile before turning around and taking Steve back to his bed. His muscle spasms were so violent and painful that his body was thrashing around dangerously and he was in such pain that he was screaming and pleading. This is very normal - happens any time he's moved, any type of motion causes it. He has not yet recovered from that 20 minutes of agony and won't for some time.
It has now been decided that Steve can only travel by emergency ambulance, but the ambulance staff (excellent people) were concerned that even the emergency ambulance may not be able to manage it. So travelling to meet you is really out of the question, travelling at all is one of my major causes for concern at this time. Clearly Steve can't go for the rest of his life in one room in a hospital.
Also, Steve's mental capacity has altered dramatically. He simply would not be able to cope with a meeting. He often lacks the ability to remember what or if he has had lunch, let alone cope with a meeting. Even close family (including me) are restricted to short visits now as his cognition is such that he finds it too much, and he cannot cope with more than one person at a time. His hearing and eyesight have deteriorated also which makes things even more difficult. Along with our Social Worker we are looking at cognitive assessment for Steve, perhaps Montreal Cognitive Assessment.
I can't help question what the point of a meeting would be. I'm not interested in anything that has happened in the past, all I am able to focus on is the future and doing the very best for Steve no matter how many noses it puts out of joint, toes trodden on.
I have been focussing my attention on the Royal Neurological Hospital in London and have done some work on specific consultants that might be able to help Steve, but it has now been brought to my attention that there is another world class facility within the Brighton and Hove local health board/trust.
Given that a year ago it was decided that nothing more was to be or could be done locally, I can only beg and plead with you to not waste one day of my incredible husband's life. He's losing the will and the want to carry on each day and I am simply desperate and clutching at straws. I have approached the London Neurological hospital directly and they inform me that even a G.P. can refer a patient there, so it can be done.
Please give my husband the chance of life. He has so much left to give, and I have had such little time with him. Please refer him to a specialist neurological hospital where he has the best chance of some kind of treatment. If everything that can be done has been done and there is no hope then I can do no more but at this time I can clearly see that there are avenues left to explore. I am desperate. I am losing him and I know it.
Please override the system, bypass Dr. Pickersgill's opinion in the name of time saving and urgently refer my husband to a specialist unit. With him being ex military I have set wheels in motion to try to secure him air transport for at least some of the journey.
I cannot beg and plead any more so I will leave it up to your professional opinion, but I must advise you that I will continue to pressurise anyone and everyone into this as I believe it is his only chance. I could not sleep at night if I was not doing anything and everything possible for Steve.
With very kind regards,