Re: Freedom of Information Request (Our reference FOI-05*****)
We are writing with regard to your Freedom of Information (FOI) request dated 30 May 2018.
Please accept our apologies for the delay in responding to your request. NHS England is not in a position to respond to your request at this time. We are still in the process of assessing your request and will provide you with a full response as soon as possible. We will write to provide a further update on or before 20 July 2018, if your response is not complete by this time.
We apologise for any inconvenience this may cause. Please be aware that you have the right to apply directly to the Information Commissioner for a decision.
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Not an impressive response after 7 weeks. Since this issue involves people’s lives - literally - David Innes did not hesitate to involve the Information Commissioner in extracting a substantive response and has now written to him.
In addition, David Innes is meeting with Professor Peter Clarke, Chair of the Chemotherapy Group for NHS England to discuss the Ibrutinib issue on Friday 13th July 2018.
Work is still going on to address this issue and CLLSA will not stop until the guidance is changed.
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Pleased to hear this is being pursued with vigour. 7 weeks is a long time. A bit like my MP who still hasn’t responded at all in the same length of time!
We must keep up the pressure. I believe Bloodwise and Leukaemia care will also be present at the meeting on Friday. More strength in numbers, and we won't give up!
On my way by train from the West Midlands to join meeting with Peter Clark to Support CLLSA and Leukaemia Care positions, New information the patients perspective and clinical review paper too. Just wish the trains were more reliable on bus now between lines due to works on track. We are all pressing this home together..
I couldn't go today as I've got theatre tickets but good luck. Apparently, Peter Clarke is a good clinician with the patient's interests at heart so hopefully it will go well. Please let us know.
I feel for all who are in countries where the drugs and care we need to improve health and save lives are not funded. Not a good case for socialized medicine.
With the current nonsense in the US, I often long to escape to Vancouver Island, one of my favorite places. It would be great to just be off the grid, maybe become a volunteer at Butchart Garden and wander amongst the beautiful flowers. Then I remember that I am chained to Dana Farber, a Medicare and insurance system that is working for me, at least for the moment, and to philanthropic organizations that help with the cost of these expensive drugs.
I hope your health care systems wake up and realize that their purpose is to provide care for those who need it. We shouldn't have to fight each step of the way.
Can’t be that difficult to copy the minutes of a meeting from one document to another on computer? Surely? Perhaps we can suggest NHSE get some IT lessons 😆😉
Has the CLLSA made Lord O S aware of this development? To me this further underlines that they are nervous about this. We must keep up the pressure and particularly for those who are in a crisis Now about this. Eg Mick. My gut feeling is they are planing a face saving back down based on “new information” they receive from everyone as part of this review. Honestly I think they should be served with a solicitors letter and or an injunction requiring them to follow the law immediately. Obviously I’m not legally trained. But that’s just my gut feeling.
I watched an interesting documentary about 3 weeks ago Monday eve. 9pm BBC 4,, as part of NHS 70 years celebration.
It was regarding the Truvada drug for preventing HIV, Despite this drug saving money its not being authorised.
This was following a small Charity taking NHS England to court, they lost and won on Appeal. (2016)
I was shocked at the way NHS England still are not authorising the drug and used very surprising tactics and arguemnets to support their decision.. .. lets hope they different bods in the office this time... fingers crossed xx
The issue with Truvada is that it is not a treatment, it's a pre exposure prophylaxis drug to prevent HIV infection costing about $24,000 a year. The argument I think is that the NHS feels that Public Health England should pay. Safe sex would be another form of prophylaxis.
I am afraid all public bodies take a long time to respond to such requests. And they find ways to limit and redact. CLLSA, David, must challenge if the final presentation of information. seems incomplete. Hope meeting Friday 13th went well
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