This morning we started to pull together all our research and the advice, comments and help that Adams’s friends had sent to us. Many many thanks to everyone for all your help, it was invaluable,
We had a meeting scheduled for between 1:30 to 2:00 with the people from Stocksbridge(Stocks from now on) who were coming to assess Adam.
We arrived at the hospital at 1:15. By 2:00 pm nobody had arrived. At 2:30 still nobody from Stocks. At 3:00 pm the staff decided to make some enquiries. Eventually they had to ring Stocks, to be informed that the “suit” had cancelled the appointment earlier that morning!.
Lots of things have happened during the day. Phil has posted about our MP wanting to raise this at PM question time on Wednesday. Lots of emails have been flying about. Lots of misinformation but also some real progress.
We have a meeting at 2:00 tomorrow with the “suit”. Maybe things will be resolved, we will let you all know the outcome as soon as possible, certainly by tomorrow evening.
Although the concept is a mystery to me, the twitter campaign is working. Please keep up the pressure. Adele and I send you all our love and thanks, we do not know how we would get through this without your support.. Adam sleeps, but smiles a lot as we tell him what is happening.
OK this is what needs to be done.
Could everyone please support Adam by joining Twitter (if you are not already on there). We are informed that for this campaign, twitter will be the most effective.
It is easy to set up an account at www.Twitter.com and costs nothing. Please follow @SendAdam2Putney as well as following all your friends (who will then follow you). Whenever you see a post from @SendAdam2Putney please retweet it
Please also tweet to @nhsLeeds and Adam's MP @AlecShelbrooke and Health Minister @NormanLamb.
Please put this message on your own facebook pages to contact those who are not receiving updates from Adam’s pages. By Monday morning we want a few thousand tweets.
If you need help ask phil@philgott.co.uk.
Here is a bit of background: The specialists have advised that the RHN is the best place. This will maximise Adams chance of recovery. However the suits disagree. They claim it is not about the money which amounts to £142 per day, but they want to keep Adam near his family, so they are proposing sending him to Sheffield where he has no family and I suspect very few friends . He would finish up isolated and not receive the care he deserves. LGI tell us that this centre has someone trained in “Smart Testing”, trained, but not qualified, and just one person. Fills you with confidence?
There is a hidden agenda here.
If you need help ask phil@philgott.co.uk.
Lets get moving
Also tweet celebs on twitter and ask them to retweet the info that way getting a much wider audience and hopefully making more of an impact. I plan to ask all the celebs I follow to retweet Adam's case.
At the time of writing, Adams twitter account has 66 followers. There are 6000+ of us in this group. Well done everyone who has followed so far. Get busy everyone else!
I have set up a Twitter account for Adam. See @SendAdam2Putney
Could everyone on this Facebook Group who has a Twitter account please follow and retweet as much as you can.
Please also tweet to @nhsLeeds and Adam's MP @AlecShelbrooke and Health Minister @NormanLamb.
If you don't have a Twitter account, please start one. Then do all of the above. We need to get as much exposure for this as possible.
ThanksWe are having real problems with the NHS. I know it is the Christmas holidays, but can I ask you all to keep checking this page. We may need you all very soon. Andrew and Adele
Just sent this to UK Health Radio:
Adam Pickles is being denied the healthcare his specialist medical team have recommended because NHS Leeds want a cheaper alternative which the clinicians say will not serve his needs. Is this postcode lottery?
Adam suffered an unprovoked attack in Thailand which has left him in a coma for 7 months. He is in Leeds General Infirmary. Following weeks of testing they say the best place for him ishttp://www.rhn.org.uk/, who agree.
But the bureaucrats say 'no'. They want a (slightly) cheaper option of a care facility which does not even employ an occupational therapist.
For more information see: @SendAdam2Putney orhttp://www.facebook.com/groups/adampickles Hi everyone. Here is the situation. After months of work, testing and assessing Adam, preparing reports sending them to Putney, getting registrar’s reports and consultant’s reports and final getting acceptance from the RHN, the administration in Leeds in a space of a few days has come up with the solution of sending him to Stocksbridge Neuro Rehabilitation in Sheffield, which by coincidence is cheaper. Not only that, amazingly they can come to the hospital on MONDAY to do the assessment, in one afternoon. Because thy’re outside the NHS and an independent company, obviously they will come to the conclusion that Adam is suitable for their care.
I have looked into this. This is a nursing home. It does not have the resources and capabilities that our Adam needs and deserves, and I will not let this happen. All it does is save cost and ignores the patient’s needs. It puts the recovery that we have fought so hard for at risk.
I want to stop this before it even gets started. I am doing my own background research and comparison research to find out who they are, what level of expertise they have, who the directors are, what successes have they had….in fact anything. What does Putney offer over and above this, what facilities do Putney have that Sheffield doesn’t? What additional support from friends and colleagues can he expect in London rather than Sheffield. What do we know that Putney can offer that we need to challenge these people with.
Time is short. I will be at the Hospital on Monday and have planned certain actions. I need to be fully armed. I don’t think we are at the stage of bombarding people with emails, not yet, it is more who do we know and what do we know. I need to gather as much insight into this as possible.
Can you help?
Can someone co-ordinate this to help?
Who do we know with influence that can assist. We are looking into legal pressure, all other help is really appreciated. We cannot let them do this to Adam.At last some good news. The occupational therapists have completed the smart testing process (many many thanks to Kerry) and has proposed that Adam is transferred for rehab to the Royal Hospital for Neuro Disability in Putney, South London. (www.rhn.org.uk) . The consultants reports and registrar’s reports have been compiled and sent off. The RHN have assessed all of this and have agreed to accept Adam as a patient.
The RHN is outside the Leeds General Infirmary area and is an independent hospital. They are writing to Leeds saying they will accept Adam (in fact this may well have already taken place). The next step is for the Leeds trust to agree to the funding, and we are awaiting information regarding the Board’s next meeting, and hope that this will be before the end of the year.
Time scales are not known yet, but we hope that this can take place quickly. LGI is unable to provide the specialist level of care needed and for Adam’s sake we cannot afford to wait any longer. We will keep the pressure on to ensure that the treatment he does receive is at least adequate for his condition.
Adele and I are obviously sad that he will be so far away, but we believe, and so do the occupational therapists, that this gives Adam the best chance of recovery and regaining quality of life. We will make it work knowing that it is for the best, secure in the knowledge that his needs and recovery will be properly taken care of at a specialist centre. We will still visit regularly, but will not be able to spend as much time with him as we are doing at present,
If you want to know more about RHN check out the web site and the recent Panorama programme.
Thanks to all for the messages of support and offers of help. For now we are monitoring the situation closely. If there are any delays, or if for some reason the funding is turned down we will let you all know immediately so that we can take action. Hopefully, this will not be necessary.
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