I seem to be having more luck with communication via social networking than with the team these days.
I am still waiting for a phone call from the Consultant Psychiatrist and the GP. I may have to ring again. The care home were meant to pass on my messages and the last I heard they were having a meeting. Well I have not yet received my invitation and that was some time ago now. Communication works both ways and I have always been open and honest with the team giving them information but this has not been reciprocated. This is why I am in favour of Open Dialogue because when you are excluded and not kept informed then not only is this not very nice but not beneficial to the patient.
Anyway I have phoned the care home twice to ask their permission out of politeness that Elizabeth comes home this weekend. I was not able to have her over the Bank Holiday. I am waiting to hear if that is acceptable even though Elizabeth is not on a Section any more I would never just not bother to inform anyone in the team as the drugs need to be made available – until her treatment is revised there is no way that anyone in the family would try and intervene in a change in treatment as when it comes to the drugs I am not an expert and this would need specialist help. However, I question the expertise of some of the immediate professionals when they just plod on and continue when I have presented them with facts from someone who is a top expert. There was barely any time to discuss anything with the GP as only 10 minutes was allocated and I had never come across such a ruling before. I have sent on to the GP some very important medical records that they did not appear to even have.
Now there is the mystery of where the oils and the supplements disappeared to. How can a big box of supplements disappear into thin air. If these are not found I shall be issuing a bill and am waiting for Cambian to ring. It is no good them saying that they were sent on – where are they then? I may be a long way from Wales but Head Office is on my doorstep. The care home say they have not received the supplements so this is now down to Cambian and if Cambian have not got them then the question is did they actually get sent on from the Bethlem however I do know that the oils did. Aromatherapy oils that according to Eliabeth worked better than any single drug and they have disappeared into thin air! I am quite prepared to drive to all three locations. The private psychiatrist prescribed zinc, fish oils, B12, Niacin and vitamin C. Well I have found plenty of the B12 which I must ask the consultant psychiatrist to include but now they have asked me to supply the fish oils and I am not happy as they have gone missing – why should I have to supply these after so many things have gone missing costing hundreds.
Anyway, enough of this I am extremely happy with some new connections I made through my website and I spoke to one of these last night and I have purchased her book “Wonderfully Strange” this is by Becky Shaw by the way and what a remarkable person she is. I felt honoured that someone had contacted me who could really identify with my daughter’s case and see things from my point of view through again experience of her own family. I felt inspired by listening to her account of recovery and I have no doubt so would Elizabeth. This is someone who I believe could really help my daughter – someone who has gone through so much and come out on top. I can only hope that will be Elizabeth one day. I hope to meet up with Becky Shaw soon if she comes to London. Also via Twitter – I was contacted by a group called “Heal the Regulators” – apparently they are going to the BBC -not sure yet if I can get time off for this but I know lots of people who would like to speak to the BBC besides myself.
Another contact I made via my website has told me of the shocking fact of her son being offer £40 for trials at the Bethlem. I am not against clinical trials taking place but they should not be on offer to the most vulnerable patients – ie my daughter did not even know she was on Metformine or Clozapine and it is all well and good the team saying she agreed – how can they explain this – she signed an Advanced Declaration before going in to that Research Hospital against going on Clozapine and so they are in breach of human rights as far as I am concerned. These clinical trials should be advertised and I am sure they would be paying more than just £40 if they did this properly.
Also they have been offering unlicensed drugs – the Metformin was given off label for weight loss for example.
The spray someone else I know was given is also off label – this is the spray below and details of it:
Researchers Launch Study with Oxytocin Nasal Spray
A large clinical trial will test the safety and effectiveness of oxytocin nasal spray to improve sociability and communication in children and teens with autism. The federally funded clinical trial follows the promising results of a pilot study funded by Autism Speaks. The researchers hope to recruit 300 participants, ages 3 to 17, at centers in Boston, New York, Seattle, Nashville and North Carolina.
A naturally occurring hormone, oxytocin plays a critical role in sociability and affiliation. In the Autism Speaks-funded pilot study, researchers administered oxytocin or saline nasal spray to 25 children and teens twice a day for 2 months. The children who received oxytocin showed greater improvement in social behaviors compared to those who received the inactive nasal spray. Based in part on these promising results, the National Institutes of Health (NIH) awarded $12.6 million to fund a national clinical trial.
The hormone oxytocin plays a crucial role in social bonding.
“The Autism Speaks-funded pilot study was critical in getting the larger grant to test this treatment,” says lead researcher Linmarie Sikich, M.D., of the University of North Carolina, Chapel Hill. “We want to extend our great appreciation to Autism Speaks, the families and children who participated in the pilot study and the National Institute of Child Health and Human Development, which is supporting the larger trial.”
The study is called SOARS-B, for the Study of Oxytocin in Autism to improve Reciprocal Social Behaviors. During the first six months of the study, half of the participants will receive the oxytocin spray. The other half will receive the saline spray, for comparison. Neither researchers nor participants will know who receives which. During a second six-month period, all participants will receive the oxytocin spray.
The researchers will measure improvements in social skills and communication. They will also use blood samples to conduct gene-based tests. In this way, they hope to track whether and how the treatment alters gene activity associated with sociability.
“This exemplifies translational science,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “Autism Speaks funding of basic science on oxytocin and a pilot clinical trial with children provided the leverage needed to fund a gold-standard national trial. We’re tremendously grateful to our donors for making this possible.”
The researchers expect to start enrolling subjects in early 2013. Participating centers include:
* The University of North Carolina ASPIRE program, in Chapel Hill and Durham
* The Lurie Center for Autism, Massachusetts General Hospital, Boston
* Seaver Autism Center, Mount Sinai School of Medicine, New York
* Seattle Children’s Research Institute
* The Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders, Nashville
For more information, visit the SOARS website. Please also see Autism Speak Participants Guide to Autism Drug Research.
Funding of the SOARS study is part of $100 million in federal grants awarded to nine Autism Centers of Excellence earlier this month. Many of these major research projects grew out of pilot studies funded by Autism Speaks. Please see our related news story here.
Autism Speaks is currently funding a number of studies on oxytocin. You can explore these and other donor-funded research projects using this website’s Grant Search.
Reported by Autism Speaks science writer Laurie Tarkan
These trials should not be given to patients who are extremely vulnerable as in the case of my daughter and others at the Bethlem. Neither should the drugs be enormous in order to challenge someone’s physical health to the extreme as in cases I know. What is going on when vulnerable patients are being used as human guinea pigs.
Anyway, Elizabeth will hopefully be down this weekend and may wish to write herself like last time. If the weather is good I will be taking her to the coast for the day – I have Friday off and then the weekend and will drive her back Sunday.
As I have discovered I receive more communication through social media that through all the teams put together but the biggest worry is when there is no communication between the psychiatrist and the GP – when medicine is overprescribed like the Metformin that I got taken off 500mg a day off label – this was given by the Bethlem and should not have been.
I am also hoping that the Professor who is the Country’s leading Expert in Cytochrome P450 Metabolism will soon come back to the UK as I would like Elizabeth to see him and be analysed as she is treatment resistant and if someone is treatment resistant what are they doing giving the drugs and why are the team dismissing PTSD and the report I have – there is a wall of silence about this and underneath all of this could well be underlying physical health problems not ever investigated by any team as they have been too busy coming up with new diagnoses and more and more different drugs to experiment with than think about the physical health of Elizabeth.