Thanks so much for your email.
You're correct, the meeting with Sister Morgan, O.T., Physiotherapy, Social Services, Discharge Coordinator and briefly one of the ward doctors was very helpful in terms of the support and equipment needed for ongoing health care. It was great to have the meeting as the last one that had been arranged was only attended by myself, Steve's Social Worker and Julie the Discharge Coordinator. I'm confident that in due course all necessary avenues will be explored and procedures/equipment put in place to aid Steve's return home, which I am very much looking forward to.
My main area of concern, however, is Steve's ongoing treatment and his diagnosis. There isn't any and there isn't one.
Dr Fady Joseph is Steve's lead consultant and has been saying for over a year now that he has no idea what is wrong with Steve. They know there are pockets of inflammation in his brain, but they do not know how or why. I hear that locally, very test that can be done, has been done.
We asked at our last appointment with Dr Joseph for Steve to be referred to the Royal Neurological Hospital in London. Dr Joseph said that the procedure locally was to have a second opinion provided by a fellow consultant, then a referral after that, presuming that report is also inconclusive.
I have a copy of a letter Dr Joseph sent to a Neurological Consultant in Cardiff (Dr Trevor Pickersgill) on 23rd May 2012. We still do not have even an appointment booked to see this consultant and Steve's deterioration has once again been dramatic. He is now one month exactly into his current hospital stay.
I have approached the Royal Neurological Hospital myself directly and asked how I go about a referral. I was told that even a General Practitioner can refer a patient up to this hospital.
If this is the case, I would like to know why this has not been done before now and why Dr Joseph has insisted on delaying things even further by acquiring a second opinion. My Husband is suffering every minute of every day and receiving no treatment for his illness, just pain killers and muscle relaxants. To my mind this is palliative care, not treatment.
If there is nothing that can be done to help my wonderful Husband, then we are just going to have to deal with that. At this stage I do not feel that the Aneurin Bevan Health Board is doing anything at all to help diagnose or treat him, simply manage the symptoms he is experiencing as he nears his end.
to put you in the picture of how bad a condition this 43 year old is in, I lied to get an appointment today to see Dr Joseph. The last time we saw him was April 17th 2012 and many weeks ago I could clearly see that Steve was deteriorating, so despite not having a letter to tell me to book an appointment for his clinic, I called the booking office. I pretended that I had left my booking letter at home and was ringing from work, that was why I didn't have a reference number. The call handler was confused as there was no notification that I was to book in, but eventually agreed to allow me to do it. The appointment was for 2 months later.
That 2 months was up today and, as instructed by the ward staff I arrived at Ysbyty Ystrad Fawr at 09:00 to await the transport to the Royal Gwent for the appointment. The Ambulance made it as far as the Ystrad Mynach round about before heading back as Steve's muscle spasms were so violent and painful that they said it was unsafe to take him. He had taken Diazepam and Oramorph before embarking on the journey. I totally agreed with the Ambulance staff it is not safe for him to travel even with them, he is going to have to be sedated in order to travel at all. He now needs to travel in an emergency ambulance with qualified paramedics. Is this really a life for a 43 year old man?
I look forward to hearing from you,