Wall to wall sunshine again today but I woke up at 2.30am and that was it. i just couldn’t get back to sleep. I was like this when I was first diagnosed and I would come on the computer at talk t my dear friend Peter. We would buy a cream cake and eat that being really naughty. He couldn’t sleep because he was in such terrible pain. He did die and I do miss him.
So I went onto the computer and chatted to friends in Canada and USA and Australia. Lou was on and we help any Mes warrior that was needing info like we do during the day.
Chatting with Sharon we realised we live near one another so we just have to meet up. She works around here so after Friday I will sort where we can meet up and have a good chat.
The day became morning and Ray got up, I was tired. My brain has been working overtime -its how I sort everything out and put my thoughts in a file to understand things and sort problems out. I think I have done it all and know where Im going –My new pathway.
I took photos of my Elephant Ears- Bergenia are more commonly known as Elephants ears duw to the size of their leaves. Large, broad, leathery leaves which make this an ideal ground cover perennial. Pink flowers …
I did have a quick nap after lunch and then took Louis out in the car to the park and a run around his field. The local Dog walkers were there in two vans with. They walk them 4 at a time so the walkers get a lot of exercise. They are all put in crates in the vans and Louis stands watching -what he must be thinking I don’t know. Does he see them as prisoners ? He has to go to the kennels for 3 nights when I go to Manchester to a large Medical conference as Im talking about all the treatment and hard its been to find treatment. I have also a lot of messages from Mesowarriors and Carers and the problems they had or have. I handed all my notes in and this is the out come I can now talk for them. and I will use all there writings as the bases of my talk.
Poor Louis has to go to the kennel. he has been there 3 years ago and he pined so they had him in the office and spoilt him.
On the way home we called in the Chemist. I had ordered tablets but they were not delivered. There they were on a shelf and Deliver was on the copy of the prescription. These are my important nerve blocker. I was run out how do you get through that you need them.
Janet Boyle phoned me, A journalist specialising in Health and science. She supports children with cancer and the Bill covers her interest. She met me through my blog and she asked me if the Saatchi Bill covered Scotland. I thought it did but on contacting Saatchi Bill apparently it only covers wales and England -i hope they do manage to get to to pass in Scotland in time.
It was time to cook dinner when I got home. A day has finished and I hope I sleep tonight.
Lord Saatchi answered the Times today as they had said we dont need the Innovation Bill After this maybe they will understand. I wonder if they lived in our shoes — they wouldn’t argue with it then. Now we are waiting for the Bill to be rewritten with the added ponts that have been raised.
The evidence for the need for the Medical Innovation Bill is compelling. Around 18,000 doctors and patients replied to the Department of Health consultation supporting the Bill, many confirming that they have experienced the deterrent effect that an increasingly risk-averse culture is having on responsible medical innovation.
The objections in Mr Poole’s letter (Apr 24) relate to details of the Bill that were not in Lord Saatchi’s original text and will not be in the text that he intends to introduce early in the new session. The Bill team will soon publish a new draft which meets concerns expressed by legal and medical professionals.
Doctors must be given the freedom to innovate responsibly, with the confidence that the law will protect them if their decision is made with the support of a responsible body of medical opinion.
They must not be forced to wait until their decision is tested in expensive and traumatic litigation or disciplinary proceedings. Nobody wants that, except perhaps a small group of lawyers who make their living from the existing litigation-focused system.
The Bill will be an opportunity for all those who are concerned that the legal system is not properly serving patients with rare diseases, whose hope rests entirely on innovation.
Patients want to know that every responsible avenue is being explored in order to help them, and that doing nothing is no longer the easy and safe answer.
Good doctors must be given the protection and encouragement of the law to innovate; and bad doctors must be deterred from innovating without support of their colleagues.
The Bill achieves both aims, and is to be welcomed by lawyers, doctors and patients.
Parliamentary Counsel to the Medical Innovation Bill team